Tuesday, September 02, 2014

Saturday, November 15, 2008 WendyO., Community Member, asks

Q: Chronic Osteomyelitis Of The Mandible (Jaw Bone)

Hi all, I'm new here, I suffer from osteomyelitis and was wondering if anyone else on this site is in the same boat, I know one named Anne is but I'm looking for more people, hopefully I wont find anyone because the thought of more people dealing with this makes me sad, yet if there is I'd like to start a support group of sorts for fellow sufferers to vent and talk about their condition, actually anyone who has osteo for that matter and lives with the chronic pain, well I guess everyone on here is in that very place unfortunataly, anyways thanks for reading and have a great day.

 

Wendy

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Answers (56)
Cort, Health Guide
11/15/08 8:37pm

I think you should create a support group for osteomyelitis patients! Most diseases have support groups or foundations that provide information and help to patients but I was unable to find one for osteomyelits.  There are a couple of Wordpress blogs on osteomyelitis (http://wordpress.com/tag/osteomyelitis/) and I found a small online group 

(http://www.experienceproject.com/groups/Have-Osteomyelitis/92900.) but it sounds like a support groups is something that's wanted and needed in this disease. 

 

Heres some more information on osteomyelitis on Health Central. 

 

http://www.healthcentral.com/encyclopedia/408/239.html

 

Good luck! 

 

 

Reply
bfu, Community Member
10/23/09 4:31pm

COuld someone out there please help me i have been suffering from chrinic pain of my lower right jaw with severe facial swelling and this red patch on my face for almost a year now they kept on telling me it was an abcess tooth so they pullede the tooth when treament did no twork then it got even more painful so they then treated the tooth next to the first one and when the root canal did not help they pulled that tooth i have been trying to get someone to understand what i am going through everyday just this past week i have had severe swelling and pain in the face and now all of a sudden these headaches with it does anyone know what is going on!!!??? And also the severe pressure felling in my jaw bone going into my ear just started???

Reply
Lisa Jean, Community Member
10/29/09 10:46am

Hi,

 

My daughter suffers from Osteomyelitis of the mandible (lower jaw)  You need to insist on a CT Scan to determine if in fact it is your bone that is infected and not just the soft tissue due to teeth.   Be persistant....most Dr.s would rather give you a quick fix versus getting to the bottom of the problem.  Be your own advocate!!

 

Best of luck

 

Lisa

Reply
OreoDancer, Community Member
11/18/09 1:53am

Lisa, I am interested in the comment about determining if it is the bone that is infected vs just the soft tissue due to teeth. What do you mean by that? How would they know from a scan whether it is the soft tissue? I know there would be bone changes if in the bone, but if it is in the soft tissue? Very interesting thoughts.

 

Susan

PS. How did your daughter get her infection? How long has she had it? Treatment? ETC? Feel free to e mail me at Max10131997@hotmail.com. I don't come on this site too often.

Reply
Lisa Jean, Community Member
11/19/09 11:23am

Hi Susan,

 

I belive in the CT Scan you can only see the changes in the bone not the tissue, so if there is something going on in the bone they will see it.  However,  we just got back from seeing a team of Dr's. out of state and our daughter was Diagnosed with CRMO (Chronic Recurrent Multifocal Osteomyelitis) which is not an infectious disease.  It is a disorder of her immune system that  attacks the bone causing the bone damage that looks much like an infection.  This is why the anitbiotics have not worked.  She was on a PICC line for 4 weeks and oral in conjunction with little to no improvement.   We were told that the best way to determine active destruction of bone was a bone scan not a CT.  A CT shows older activity while a bone scan can show current activity...Very confusing and scary. 

Our daughter has been suffering from this for three years, has had three surgeries, 14 CT Scans, HBO therapy a Hickman Cath and a PICC line. 

 

Blessings

Lisa

Reply
OreoDancer, Community Member
11/23/09 8:50am

Lisa,

 

How old is your daughter? Does she have a lot of pain? It must be very scary as the mom to deal with this and watch your daughter deal with it. I am so sorry.

 

Susan

Reply
CED, Community Member
6/18/11 12:52pm

Hi,

 

I'm not sure if there is anyone still there but if so maybe someone can help me. I have been suffering for a long time with facial problems. The doctors are now trying to determine if I have osteomeyelitis. Could you tell me if it was CRMO whether this could be determined from my CT scan??

 

I am a 28 year old female and the problems are ruining everyday life for me.

 

Thanks so much,

 

Camilla

Reply
Suzanne, Community Member
3/ 3/12 12:54am

Hi Camilla my name is Suzanne and I have had  sever pain started in  Nov of 07 and I am finally getting my health back if you still need help please  email me at waggonersuzanne@yahoo.com  I am sure I can help I have had dead bone lesions in my upper jaw and I know what doctors can accuratly diagnose jaw problems of all kinds please let me know one way or the other as I will be thinking of you bye from Suzanne

Reply
km979, Community Member
3/16/12 11:46am

Hi Suzanne,

  I don't know if you still check this site, but I think I may have osteomyelitis in my lower jaw.  I had a root canal fail and a tooth extracted in Dec.  The area healed up well, but two months later, when my dentist put a temp bridge on, my jaw swelled up again and I had pain radiating along my temple and cheekbone as well as on the mandible, itself.  An x-ray showed that the surgeon had missed a root tip.  After the root tip was extracted the placed the temp bridge back on and it seemed to heal well for a week.  Then I had a burning sensation, they found food on the bridge covering the extraction site, and it flared up again.  It has been 5 days since the flare up began.  Its my third day of amoxicilin and it is only beginning to take effect.  I took clindamycin for the first two infections, but wanted to give my GI track a break.  I'm going to a new oral surgeon on Monday and wonder if I should ask for a CT scan instead of the millionth x-ray.  What did the doctors do for you?  Should I go to an ortho surgeon instead of an oral surgeon? Thanks!

 

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suzanne, Community Member
3/27/12 11:27pm

Hi I am so sorry for your pain and I need to check this site more often I have had severe long lasting problems and I think I can help you with what I have experienced but it would be hard on line you can call me I live in Illinois and later in the day is best for me I think you need a cavitat scan because of the root tip being left in there the body dosnt get the right signal and there is incomplete healing and possibly bone death you have already been through alot and need an accurate diagnosis dont let anybody treat you until they know where the pain is originating by using a local anasthetic I would like to talk call me at 8159881699 bye for now suzanne

Reply
Yvetta, Community Member
6/ 9/12 8:13pm

Dear Suzanne,

 

I read you answer to the osteomylitis. I am in very bad situation myself and looking for doctors (oral surgeons to properly diagnose and treat the bone). Please email me at yvettausa@gmail.com

 

I would love to hear from you.

Yvetta

Reply
sam, Community Member
9/19/12 7:27pm

hi suzanne and camilla i have had a lot of problems with facial pain. i have dead bone removed by a dentist but i don,t think he know what he is doing so i have lost confidence in him. i would be very interested in what doctors/dentist you could recomend and how you have got your health back. sam x

 

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Mary-Kay, Community Member
12/30/12 2:14pm
There is some excellent info on these interviews - sorry I just found this site - hope someone gets this info on time!!
ON DECEMBER 31st, this link will no longer be available, so please feel free to download the calls and invite your friends to check out these interviews while you can!
Also google Dr. Hal Huggins - holistic dentist.
look into Liposomal Vitamin C on YouTube.
Mary-Kay
Reply
Ms. Anita, Community Member
1/ 8/13 5:53pm

Dear Mary-Kay:

I am so glad I just found thi site. I have been looking for support and information on osteomyelitis for I have Chronic osteo/w an oral antral fistula that has been untreated for the last three years.

I have been to over 25 different doctors, dentists, ENT's and so on.

I would love to make contact with you and find out more information. I am in San Diego, CA

Reply
susan, Community Member
8/24/13 4:17am

Hi. I have almost identical  story to you. I too live in san diego county and have been to probably 15 or 20 doctors, dentists, oral surgeons, ENT, emergency rooms, and spent 8 days in the hospital. Please write me so we can compare symptoms and help each other out. My email is sealbach@gmail.com

Susan

Reply
Suzanne, Community Member
1/ 8/13 1:33am

sam this is suzanne and i am sorry i did not see your letter I went to Dr.Wesley Shankland in Westerville Ohio I am still having problems though besides the dead bone I had two fistula tracts and they are hard to get rid of but Dr.Shankland is very good at jaw bone cavitations he has had alot of controversy over it because he started doing these surgeries 20 years ago and alot of dentist just dont believe they even exist .I would definately recommend him .Let me know how you are doing now what state are you in ? I am in Illinois so we had to drive 8 hrs. to Ohio but that isnt too bad . Good Luck I know the pain is intolerable. Suzanne 

Reply
Tammy13, Community Member
8/ 8/11 12:31pm

Lisa!

 

What team of doctors did your daughter see and where????  I have suffered with "so-called" Osteomyelitis of my lower left jaw for over 12 YEARS.  I have had 6 surgerys, 2 PICC lines, CONSTANT oral anitbotics, lost all my teeth on that side, and I STILL have this horrible disease.  I don't think this is an infection at all and have said so more than once to my doctors.  They all seem to want to give me pain meds and anibotics and then drop the ball on me when it doesn't solve the problem.  I have had countless doctors and now I have one at the U of M that is trying to tell me that I will be on antibotics for the rest of my life!  WHAT?  That just doesn't sound right to me!  HELP!

 

Reply
CFO, Community Member
5/31/12 9:27am

Tammy you need to contact a Dr in Indianapolis That treats CFO - he has been treating it for 20 years and all of your symptoms are right on with the disease antibiotics and pulling all of your teeth are not going to get rid of the problem contact me at CFOjawhelp@yahoo.com

Reply
Oli, Community Member
7/30/12 1:26pm

Hi,

I know it's been a while since you were on this forum, but have you considered checking your condition with a neurologist? It could possibly be atypical trigeminal neuralgia....

Oli

Reply
Judy Larson, Community Member
9/ 2/12 6:59am

All of these stories sound so familiar, I have been going through my nightmare for most of my life & I am 51, & for the last 2 years, have had horrible pain, intermitantly. I have been researching this for 2 years as well. From the research I have done, I would think most of these cases are Cavitational Osteonecrosis. If you Google this, you will find alot of information, but the most informative I have found, AND the most recent is this link,  http://en.wikipedia.org/wiki/Osteonecrosis_of_the_jaw   Also, there is alot of info on Youtube. If I were to write my story, it would take 3 full pages, but mine is the same as most on here, bits & pieces, here & there, of everyones. I live in Canada, & we are so far behind with CO it is unbelievable. I had Cavitational Surgery last Monday, i had to drive to Calgary, 4 hours away, to see Dr. Thomas Evans at The Evans Health & Wellness Centre. I am lucky that he knows Dr. Wes Shankland, Dr. Steven Evans, & others who are knowledgeble about CO &, he has worked with them. I am still healing & will see what the outcome will be. I am presently gargling w/ salt water, & using hydrogen peroxide & oil of oregano. Hydrogen Peroxide should help to put oxygen back into the jawbone to restructure & regrow the bone. The oil of oregano acts as a natural antibiotic & fights bacteria. I am also taking vitamin B6, B12 & Folic Acid, (one pill), 2500 mg vit C (I opted out of the intravenous vitamon C therapy), vit E, vit B 50, Milk Thistle, Probiotics & eating a healthy diet. I have many, many probelms, including systemic conditons, that I am praying will be solved by this surgery. I still have at least one more surgery to go through, but I hope this will solve some of my many problems! We must educate ourselves, & doctors, I have told the many doctors I have seen in the last 2 years, including reputable doctors in the country, this CO subject is going to be "blown out of the water" within the next 5 years, as many people seem to suffer from this & nobody seems to know that the heck it is! Good luck to all, & God Bless!

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empathetic mom, Community Member
11/23/11 6:45pm

I hope all of you will get tested for stealth viruses;  HHV6, CMV, EBV. Before she knew she had high viral titres, my daughter developed a severe infection into the bone after a complex tooth  pull.     She was subsequently diagnosed and treated with antivirals and now heals quickly with no problem.  Many doctors don't believe these viruses can cause problems  in some people  since we all carry them but if the immune system is not strong they create havoc with healing.

 

Reply
Jeanine, Community Member
11/ 2/09 8:47am

Hi,

 

I was diagnosed with sclerosing osteomyelitis of mandible.  My jaw pain started in 2004 after having dental work done. I had a tooth pulled in order to have a bridge put in.  Ever since it has been pain and swelling on and off.  I have been to 4 oral surgeons, 2 infectious disease dr's and lastly a ENT (who is also a dentist and plastic surgeon) who performed a biopsy in 9/09.  I have been on tons of antibiotics and had a PIC line for 5 weeks in 2008.  It has been hell but finally I have a definite diagnosis and this doctor recomends steroids to treat this disease.  It is very rare so not many cases to go on.  You need to find a smart doctor and most importantly be your #1 advocate.  Educate yourself as much as you can on this disease so you can help them help you.  I was told this condition will eventually wear itself out.  Not very encouraging considering the pain associated with it.  Good luck and feel free to contact me if you want.

 

Jeanine

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bfu, Community Member
11/ 2/09 9:04am

Thank you so much i have also been to so many oral surgeons and ent i just feel like i am going crazy they refuse to putme on more antibiotics because i had been on them almost a year whioch they didnt work so i guess whatever but this past week the pain started to get really bad i have a high fever for 4 days my voice is gone and just the pain is so bad the docotr told me it was nothing can you believe that i am trying to find a new doctor i was ready to give up until i read your message it sounds like our cases our so similar!!!! Thank you very much

 

Becky

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Jeanine, Community Member
11/ 3/09 10:59pm

Becky - I have never had a fever throughout this. At least not one that I knew of.  When were you diagnosed?  How long are you suffering from symptoms?  Does Motrin or Advil help at all with the pain?   It was the only thing that helped me. Not even viocodin or percocet helped me but they helped me sleep when the pain was at its worst at night sometimes.  Has your doctor suggested steroids?  Where do you live?  Hang in there...there are plenty of people out there going through the same thing we are.  Thank God for these message boards...

Jeanine

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alleycat, Community Member
11/16/09 6:48pm

Becky

 

If you have not found a Doctor to help you, I highly recommend Dr. Eugene Keller at the Mayo Clinic in Rochester MN.  I too was on antibiotics for two years before seeing Dr. Keller.  He confirmed that the antibiotics were not working because we become emmune to them after prolonged use.  It took 3 yrs for him to get rid of the infection and for the last 30 yrs I have suffered much pain due to TMJ.  I am happy to say that for the last five of the 30 yrs I have been pretty much pain free. 

Cindy

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marlo, Community Member
10/ 9/10 10:40pm

 

did dr keller do any surgery on your jaw bone and if so was it mutilating to your face.  how did he get rid of the infection.  

thanks

marlo

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alleycat, Community Member
10/10/10 8:49am

Marlo

 

No, the only thing it effected was t6he fact that I have no lower teeth.  Most people cannot tell.  Prior to the surgery the swelling of the bone and tissue was very noticable.

 

Cindy

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alleycat, Community Member
11/16/09 6:49pm

Becky

 

If you have not found a Doctor to help you, I highly recommend Dr. Eugene Keller at the Mayo Clinic in Rochester MN.  I too was on antibiotics for two years before seeing Dr. Keller.  He confirmed that the antibiotics were not working because we become emmune to them after prolonged use.  It took 3 yrs for him to get rid of the infection and for the last 30 yrs I have suffered much pain due to TMJ.  I am happy to say that for the last five of the 30 yrs I have been pretty much pain free. 

Cindy

Reply
Dental, Community Member
8/ 8/11 8:38am

Dear Cindy, I am a Soldier with numerous surgeries, before joining the military I had 4 wisdom teeth removed at the recommendation of Feds Heal when they did my Panorex, there was a huge amount of sequestrum formed and nearly a year of healing in this process.  During my last deployment for 9-11 a root canal was done and it was overfilled with a cracked root tip.  For Some reason they decided to take of the large mandibular outer exostosis (sequestrum) from the wisdom teeth surgeries and spread it into the maxillary sinus, this then took over a month to turn into a full blown infection and I ended up almost dying from the Caldwell Luc  procedure, an emergency surgery from the roof of the mouth. Several ccs nearly an oz of fluid was removed from the maxillary sinus, and within a year the two adjacent teeth were forced out by a cyst filled dry abscess. Sorry for the diatribe but I really would like to speak to Dr. Eugen Keller since he is mainstream medical and at the Mayo Clinic. If you know this doc very well you can post this mail and see if I may schedule an appt.

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alleycat, Community Member
11/16/09 6:51pm

Becky

 

I forgot to mention that I never had a fever either.  When I had severe TMJ episodes my face, the side that was bothering me at the time was red and hot.  But never did I have a fever.

 

Cindy

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OreoDancer, Community Member
11/18/09 1:59am

It makes me wonder whether or not you possibly had infection that went into the TMJ. Any idea why you had TMJ? Was it due to the infection and all the issues that go along with the infection and treatment? What did the doctor due over the course of 3 years to make you better? I am desperate for a new treatment approach. I am at a standstill here. Come back in 3 months... I could be dead by then.

 

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Marie, Community Member
11/18/09 7:41am

I have to wonder what is wrong with doctors these days. Why do patients think more logically then they do??? You sked the exact question that has been going through my own noggin for a couple of years now, but my own surgeon will look at me as if I am nuts should i suggest it. I believe my TMJ condylar head erosion is due to the CSO in my jaw, due to the septic tank that has been created in that lower mandible. The other TMJ is suffering like mad as it compensates for this one. However, the right side is also affected by the CSO sitting on my frontal bone above it, so when my right TMJ starts acting up, my frontal bone aches and my temporalis aslo goes into spasm. My left TMJ is out of order when the lower mandible flares up. A no win situation....like you, the way things are going, I also feel I could be dead by the time a solution is found. I feel that doctors have a "thing" about a patient "being right" about their problem. But guys...get over it, it is your job to HELP people!! Some of us just happen to know our bodies better than others and are educated enough to actually be able to pinpoint the problem. I have been accused of being a smartass patient as well. Geeze...I can't imagine how a doctor can get treated by another doctor then.

Chins up everyone....take good care,

"Smartass" Marie;)

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Marie, Community Member
11/18/09 7:41am

I have to wonder what is wrong with doctors these days. Why do patients think more logically then they do??? You sked the exact question that has been going through my own noggin for a couple of years now, but my own surgeon will look at me as if I am nuts should i suggest it. I believe my TMJ condylar head erosion is due to the CSO in my jaw, due to the septic tank that has been created in that lower mandible. The other TMJ is suffering like mad as it compensates for this one. However, the right side is also affected by the CSO sitting on my frontal bone above it, so when my right TMJ starts acting up, my frontal bone aches and my temporalis aslo goes into spasm. My left TMJ is out of order when the lower mandible flares up. A no win situation....like you, the way things are going, I also feel I could be dead by the time a solution is found. I feel that doctors have a "thing" about a patient "being right" about their problem. But guys...get over it, it is your job to HELP people!! Some of us just happen to know our bodies better than others and are educated enough to actually be able to pinpoint the problem. I have been accused of being a smartass patient as well. Geeze...I can't imagine how a doctor can get treated by another doctor then.

Chins up everyone....take good care,

"Smartass" Marie;)

Reply
alleycat, Community Member
11/18/09 9:55am

The TMJ, arthritis and my sinus problems are a direct result from the CSO  According to my Dr..  When he went in and scraped the infected tissue, marrow and bone, he could not get to the joints.  So the infection did linger in the joints.  I cannot tell you how bad the pain was from the TMJ.  My face was so deformed at times it was unreal!  The side of my face was swollen, hot and you could not touch it because the pain was so bad.  I could feel all the way down the side of my body.  I couldn't carry a purse if it had a shoulder strap!

I am not big on pain killers, I used iboprophen 800's, and the moist heat.  I slept in a recliner. And I bounced my foot alot.  I would try and concentrate on that rather than the pain.  Hey don't laugh..sometimes it worked.

You all have to have a positive attitude..I did..I was not going to let the pain get the best of me.  I survived and all of you will too.  Its going to take time!

 

Cindy

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nekoson, Community Member
11/27/09 8:20am

The best thing I have tried thus far for the athritis has been this Noni Nitro lotion that I found ont the website noninitro.net.  It is not oily and soakes in well.  It helps relieve the pain in my jaw bones and it is the best healing wounds & blemishes.  BBB

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Barbie, Community Member
1/14/10 10:14am

I am curious what doctor you have finally found that seems to be of help to you.  Also, what treatment has proven to work.  I would love to contact you directly if you would be willing to give your e-mail address.

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alleycat, Community Member
1/14/10 3:37pm

Hi Barbie

 

My Doc's name is Eugene Keller from the Mayo Clinic in Rochester Mi.  My email is cindytreml@yahoo.com.

 

Cindy

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OreoDancer, Community Member
11/18/09 1:57am

Becky, 

 

What docs have you seen? Why do you believe you have osteo of the jaw? I know what it is like to be doubted when you know what you have. Afterall, it is your body. You know what is going on and how you are feeling. I was told it isn't an infection even after we had proof from CT scans and cultures!

 

Susan

Reply
SDR, Community Member
9/ 1/10 2:02am
New to site. My ordeal started in march 2003 with double ear infection. Had fevers and fatigue everyday since. Will write more later. DENISE Reply
bfu, Community Member
11/ 2/09 9:04am

Thank you so much i have also been to so many oral surgeons and ent i just feel like i am going crazy they refuse to putme on more antibiotics because i had been on them almost a year whioch they didnt work so i guess whatever but this past week the pain started to get really bad i have a high fever for 4 days my voice is gone and just the pain is so bad the docotr told me it was nothing can you believe that i am trying to find a new doctor i was ready to give up until i read your message it sounds like our cases our so similar!!!! Thank you very much

 

Becky

Reply
OreoDancer, Community Member
11/23/09 8:55am

Becky,

 

How have you been since your last post at the beginning of November? It sounded like things were pretty bad. I was wondering if you found a doctor or not.

 

Susan

Reply
bfu, Community Member
11/23/09 9:15am

thank you so much everyone for the posts things have not changed i had one docotr tell me maybe i was depressed and it was causing the pain which is bull ive been through a lot in my life and know the difference they continue to give pain meds which yeah it helps but i want to know what the problem is i dont want to be numb forever i want to know whats going on and fix it!!!! somedays are harder than others but i continue to fight and get to the bottom of it they refuse to look any further into so i am now on the hunt for a doctor that will listen its not easy these days!!!

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Smiley, Community Member
11/ 3/10 2:46pm

I haven't been on this site for awhile but I read your blog and thought I would answere.  I don't know where you live but I live in VA and drive to Westerville, Ohio to see Dr. Wesley Shankland.  I have been to many doctors before I saw him and had cavitation surgery and lots of antibiotics.  I was in very bad shape by the time I saw Dr. Shankland.  The surgeons who had done my surgery before him totally messed up my jaw to the point I thought no one could fix it.  Dr. Shankland is so skilled, he had to figure out a way to fix a place in my jaw where there was no longer tissue.  I can tell you that this wonderful man is an exceptional doctor.  I feel safe now and have made a lot of progress over the last 1 1/2 year.  God bless this man.  I think he can help you. 

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Gale, Community Member
2/16/12 12:36pm

Dr Shankland did a surgery on me to remove implants in Dec., 2008.  When I asked if he got all the infected bone out....he said "We'll see."  He failed to tell me, purposely, that I was inoperable!  He let me figure it out by myself...I nearly died 6 weeks later.  I had sepsis, full blown, lost hair, nearly lost my toes and fingers....all fast growing cells ie. skin and nails quit growing.  I aged over night!!!  Since all this took place I have met two other women who also had implants in the mandible and had the exact same course of illness....same patterns of illness, so ill that they could not take care of themselves.  I called Dr. Shankland...6 weeks after my surgery and he would not take my call or call me back!!!! This is criminal.  I have been using other healing methods. Jack Garvey, Acupuncturist, in St. Augustine, FL has a way of killing the staph which is amazing.

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Smiley, Community Member
2/16/12 12:56pm

Gale,

I think we know each other.  I have a horror story about Shankland too.  Life took a turn for the worse with him

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Suzanne, Community Member
6/20/12 12:42am

Smiley I am under Dr. Shanklands care right now and I want to know what happened to you while he was your dr. My name is Suzanne could you call me at 8159881699 or email me at WAGGONERSUZANNE@yahoo.com  Your comments worried me and I am afraid to proceed. Thanks Suzanne

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Smiley, Community Member
2/16/12 1:03pm

I forgot how to email you personally.  How do you do that?  I would love to talk. I lost your number.

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Smiley, Community Member
12/17/12 11:05pm

forget what I said. I am sorry I went to Shankland.  He is not who he appears to be.

 

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alleycat, Community Member
11/16/09 6:42pm

Hi Jeanine

 

My name s Cindy and I just read your post.  I had the same condition as you way back in 1979.  I am truely concerned with what your doctor has told you.  I went to the Mayo Clinic and my Doctor, Dr. Eugene Keller, took care of me.  He did get rid of the infection but it was done with drastic surgery.  It took three years to get rid of it.  I suffered with alot of pain for the past 30yrs but that was due to TMJ.  Please stay on top of things.  Do not let this go one for too long.  My Doctor said the only way to get rid of it is surgery.  Before it was diagnosed the Oral surgeons I was seeing had me on one antibiotic after another.  Ater two years I became immune to the antifiotics!!  I am happy to say that I have my TMJ under control.  I have a bout with it ever now and then when I am under alot of stress.

 

Please keep me posted on how you are doing.  I feel for anyone who has gone through what I have.

 

Take care

Cindy

Reply
Marie, Community Member
11/17/09 5:08pm

Dear Cindy,

I hope you don't mind if I bud in. You were diagnosed with chrnoic sclerosing osteomyelitis? I am preparing myself to have a "face-off" with my surgeon before I head off for xmas and following the arthroscopy. I really want to make sure I choose the "right"way. I have read a great deal on how they treat CSO....steroids is one way but it does nothing in terms of the bacterial aspect. My surgeon has thus far stood firmly against using antibios due to my frailty and I have tested "sensitive" to a whole set of them. However, 6 forms of bacteria have come up in the biopsy results, plus severe bone marrow atrophy and regressive bone. My CT scan shows the nice glassy/opaque look in just one fragment of my lower left jaw, the rest looks pretty dead and has been blamed on "poor quality CT and x-ray"...baloney. I believe my TMJ problems are due to the "septic" state of my mandible. My condylar head is eroding and I am hypermobile to top it off. Every intrusive surgery (biopsy) has just spurred things on in terms of TMJ a lot faster. It is often hard ot distinguish between the constant throb coming from the mandible and the pain coming from my TMJs. SO, my concern is to finally get the whole thing right. I do not want to waste more time with biopsy number 5. This nasty CSO is sitting on my frontal bone as well, so for the past two years that I have known my surgeon, I have been trying to urge him to do something before I end up pushing daisies. My body can't handle it at times, I feel septic and absolutely useless when the flare up gets bad. Nobody listens to me though, they all think I am nuts when I say that it all starts in my mouth and then the rest of my body follows in a fit of feeling absolutely ill. There is such a sad lack of knowledge among doctors regarding osteomyelitis. I have suffered for longer than necessary and I am afraid it will take another several months, perhaps next spring, to get to the bottom of this. Sorry for rambling...basically, I have come to terms with the possibility that I may have to lose half of my mandible to win this battle. I am not willing to undergo some sort of compromise and do things halfway. I do not wish to live with flare-ups lurking in the backdrop until I die. I want to get rid of this problem for good. So if you have/had CSO and have remained well since the drastic surgery, it is encouraging and inspirational. Thank you for sharing your story.

Take care,

Marie

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alleycat, Community Member
11/17/09 8:41pm

Hi Marie,

 

Thank you for responding!  I really never thought anyone else was going through what I did.

It took several years to find out what was causing all my pain.  When it first started I too said this is all coming from my jaw but no one could find anything.  My dentist sent me to an eye/ear and nose specialist and his first comment to me was "I hope you don't expect major surgery, kids your age just want attention".  Of course he found nothing.  A year later I found a small bb size lump on my lower mandible.  The dentist had a hard time xraying it, but he finally found something.  He sent me to the Oral surgeons.  They had no idea what they were treating.  All they kept doing was putting me on antibiotics.  I was in so much pain.  There where times when if it was my left side bothering me it went from my head down to my leg.  My shoulders would feel like they were numb.  I cried all the time.  Finally the Doctor at the Marshfield Clinic diagnosed the CSO.  He sent me to the Mayo Clinic in Rochester Minnesota.  Dr. Keller removed all my lower back teeth.  He scrapped away the tissue and bone and removed the bone marrow.  Yards and Yards of packing was put in so that the marrow and what ever would heal from the inside out.  Every week the packing was replaced.  Oh how painful.  I was in the hospital for 45 days on inter. antibiotics.  By the way my body was immuned to the antibiotics by the time I got to the clinic.

Almost exactly a year later I returned with the infection still there.  This time he removed the remaining front teeth..He was hoping to save them but sadly no go.  The same procedure was repeated, tissue, marrow and bone scraped away.  It was another 45 day stay.

The following year the swelling on my face was still occuring.. But this felt different.  The Oral surgeon that I was seeing in Green Bay sent me to Milwaukee for hyperbaric treatments.  45 days as an outpatient.

I suffered for years after that.  The doctors in town did not have a clue.  I could not afford to continue to see Dr. Keller and he was 5 hours away.  My face would hurt so bad, swelling, hot to the touch.  One Doctor actually thought I had clogged saliva glands!! LOL.  Finally I was told I had TMJ.  I worked the midnight shift and I know I was under major stress.  I had a 3, 2 and 1 year old at home.  Sleep was hard to come by.  I had therapy for the TMJ.  It helped but the pain was really horible.

I finally got the day shift and it was like magic!  It took several years but the TMJ is under control

Since I found this site..Which was on sunday.. I have been thinking about how long it has been since I have had the pain.  You know it was so gradual that I think its been like five years!!  I am in tears typing this to you because I know what your going through. 

Dr. Keller did a study on the subject.  I am one of his test cases.  If you google him I think you will find it.

The sad thing is that the pain for me was a good 23 years worth.  It took awhile.  But I have a great family and friends for support.

Have your teeth been removed?  Did your doctor remove the bone marrow? 

Like I said I just saw Doctor Keller on Friday, my goal is to have bottom teeth again.  I'm a little worried but he thinks I should go for it.  He said it should actually help with the TMJ.  That is where most of my pain was from.

If you want to email me you can at cindytreml@yahoo.com..

It is so nice to talk to someone that knows what I went through.  I know Dr. Keller said he has only treated 6 patients with the same problem.  All but one are doing good.  The one still has pain.. but that might be the after effects TMJ.

 

Where do you live?

 

Cindy

Reply
bruce, Community Member
11/17/09 10:43pm

my wife has acuteosteomyyelitis of the jaw. she has been in the hosptial for a week and is in sever pai most of the time. her doc doesnt want to give her a strong pain killer for fear of addiction.my wie has lost 20 lbs and know has a fracterjaw and has her jaw wired shut. need to know what she should be on for pain med.please help

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bruce, Community Member
11/17/09 10:52pm

if anyone has any info that can help my wife you can email me at brucegauthie@ymail.comthank you

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OreoDancer, Community Member
11/18/09 1:49am

Your wife should demand pain medications. The heck with addiction. When a person is in pain, they have a right to appropriate pain management. Addiction doesn't happen when these meds are used for pain management. Yes, a dependence can occur, but I think your wife has much more pressing issues to deal with and IMO, her doctor doesn't sound very good. Sorry. What state are you in? Any idea how this happened to her, etc? You can feel free to e mail me personally at Max10131997@hotmail.com. I have chronic OM of the jaw and have been battling it since 2002-2003.

 

Susan

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lee, Community Member
5/ 6/10 10:05pm

How did you know that you have osteomyelitis of the jaw? I have been suffering from jaw pain after a tooth extraction about 3yrs ago. I went back to the denist & told them that I was still experiencing pain, so they took an Xray and didn't see anything and suggested that sometimes it is sinuses. So I went to my doctor who began to diagnose me with numerous sinuse infections, which never healed. Then I had a ct of the sinuses, then an MRI which suggest osteomyelitis. Was referred to oral surgery, who said it wasnt!! Now, I have pain on the whole left side of my body from my jaw all the way down, a rash and I'm always fatigue! Swelling on lower left side and a bump on the upper left side. I have been to a neurologist, have had an MRI of my neck, a test for strep throat bc my throat is bothering me. I'm so frustrated

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cindy, Community Member
8/11/11 12:15am

I have the been diagnosed with the same thing. Started with a simple procedure that ended up breaking the jaw bone, and then got infected from the wires. Everything had to be removed and custom plates put in. Now undergoing Hyper Baric treatments which are terrifying. I have been on Hydrocodone 7.5/325 and tylenol. It has help. Please tell me whats going on with your wife. Looking for some help.

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OreoDancer, Community Member
11/18/09 2:03am

Marie,

 

Your case sounds a lot like mine. My osteo is the upper jaw, but I believe it is now in the lower jaw as well. I have had a couple of debridements in one area, but I am still not well. I can actually feel when the flare up is there and then when it is gone I feel good. Very strange. I am always on antibiotics. I know the strange looks and the comments about placebo effect, etc. This is a living hell. I would love to talk more with you, if you are interested, please e mail me at max10131997@hotmail.com.

 

Thanks, Susan

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OreoDancer, Community Member
11/18/09 1:46am

Cindy, I would love to hear a little bit more about what you had done, how many teeth pulled, how you replaced the teeth, etc. Can you e mail me at max10131997@hotmail.com, or even just post on this site? I find it easier with a one on one communication as this site confuses me. I have been dealing with chronic OM since around 2002 to 2003. I am not getting better, I am getting worse. I am interested in the surgery you had where they had you heal from the inside out. It makes sense to me to do it that way, but what did they do? It seems Mayo doesn't treat this illness as well as it once did. I wonder if your doctor is even around anymore, I mean it has been 30 years. 

 

Susan

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OreoDancer, Community Member
11/18/09 1:55am

I am interested in the steroidal treatment. Why would they recommend steroids when steroids actually decrease immune function? Are you receiving this treatment? Are you better? I don't know about it wearing itself out. I don't see how it can wear itself out until after the bone is completely eaten away by bacteria, etc. Yes, very painful illness and that is why I am a very big advocate for pain management in dealing with it. It took me a while to do pain management, but it is what has helped me get to today. 

 

Susan

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Marie, Community Member
11/18/09 7:31am

Thanks to everyone for your responses. It is a tremendous support and I don't think ANYONE can imagine what people with OM are going through. Even my own family accused me of being a wimp, a big baby until my own mother (God bless....but she needed to learn the hard way in order to appreciate my own problem) got sciatic nerve inflammation and crippling pain. Another friend also thought I was just asking for attention (I am NOT an attention seeker, I am not much of a social person) then boom...also sciatic nerve compression. Seems I have a curse that anyone who dares doubt my pain gets sciatic nerve problems LOL.

Anyway...I would be curious to read what bacteria was discovered in peoples biopsies, please specifiy if you have chronic sclerosing or classic osteomyelelitis. Both vary dramatically in imaging results and structure. CSO mimics fibrous dysplasia but is of bacterial origin, but manages to create the same complex weblike/glass structure of FD. I seem to have a mixed structure. The sight around last years 2.5 cm formation of sequestrum was CSO - around my 1st/2nd lower left molar. The rest towards the back, up past the ramus is black looking and towards the front as well. I can literally feel how this thing is spreading gradually tooth by tooth each year. Last year it was still hovering around my 4th lower tooth, now it is affecting the 3rd one as well. My bacterial findings are typical strep and staph, plus four other weird ones - propionibacterium, Eubacterium, Rothia mucilaginosa (massive), corynebacterium. My bone doctor is pissing me off saying that we all have this in our bodies...yeah yeah yeah...I am sure we all have it in our bones. This cocktail/toxic dump is what I suspect has caused my TMJ condyle to be "eaten" up over the past 4-5 years, since this whole thing started. I am angry that my surgeon is so passive....he should be glad I am alive. I often have spells, where i feel my head is swelling, I can't bend my head forward and I am sick as a dog. My bones and joints ache and I have severe brain fog and a sudden problem with my kidneys which are normally otherwise symptom free. As if I am enduring a minor septic shock. I have always been a strong person in terms of health until EBV. When I last suggested to an internist that this all starts in my lower jaw (my jaw starts aching and then I literally feel the stuff ooze into my mouth and boom) and then I begin feeling physically ill, they told me I am a hypochondriac and seeking attention because I live alone. I said that I chose to live alone until my health issues are solved and am satisfied like this and walked off. Then I was accused of alcoholism - mind you all, I am a total abstinent. SO I gave up last year and let things ride for 6 months until the sequestrum was so bad I hardly had a day I didn't feel sick. These flare ups are nasty and I want to put an end to it. But until recently, my surgeon kept thinking I have a metabolic disorder or fibrous dysplasia and didn't want to admit that I could have osteomyelitis. And why the heck not??? I had all my wisdoms removed during severe EBV and other dodgy dental work done during EBV. It has been my number one suspect on my list...but now my surgeon has to slowly accept that it IS CSO and start treating it. He is lucky...I am off for 5 weeks after my arthroscopy to see my family for xmas, so I hope it gives him time to sort things out in his head and put a plan together. I am prepared to do anything to get out of this with the rest of my health intact. However, I am very concerned about my heart, the palpitations I have and the severe thumping and pumping I have during a flare up. I want to be guaranteed that my heart has NOT been affected and that my lungs are also intact without any of the above bacteria having a party on them. I have been living with this completely UNTREATED for 4 years now. The occasional antibiotics after biopsies until it was confirmed that I am sensitive to a whole scale of them, so I have not had any for almost a year and a half now. I am MAD about everything. I asked my surgeon how he would feel if he had what is living in his jaw living on his frontal bone???He was quiet. I don't trust dentists and root canals anymore...the CSO on my frontal bone is from an overstuffed upper left molar that caused chronic sinus inflammation and massive headaches.

What a mess....i don't like pointing fingers. We are all responsible for our own lives, but there are just some things in life where others play a huge role....that's health. You know your own body, you can feed it right, be active blah blah blah but doctors don't listen and like in some of our cases here, they have only contributed to making things worse. How the heck could CSO travel to my frontal bone and nobody take notice of it??? No excuse for that. I knocked on a lot of doors 3 years ago when the CSO first appeared on my frontal bone and i was told to go to the shrink. Now I am still waiting and waiting anxiously for my surgeon to take some action and get moving...The arthroscopy planned for Monday may provide some relief in terms of certain pain, but mainly, it will allow him to take a closer look at the condylar head destruction. He is not dumb, he is just not honest and open about his plans. In Europe, doctors treat patients differently. They keep you in the dark.

ONe more thing....steroids for CSO seems to be one option, but CSO is quite controversial in terms of its cause. Some say it is caused by bacteria, others blame a buggered up immune system that starts overproducing, hyper-osteoblast formation. Who to believe? If it is similar in form to fibrous dysplasia, then I see no other way than removing the affected bone as the right answer to the problem. Keeping it there and trying to suppress it with steroids is just temp. relief. Re. FD, once the affected bone is removed, FD is gone. The question with CSO is the bacterial side of it. Once again, another reason why it is simply better to be rid of the affected area than to continue cultivating it in your mouth. I believe that is the key to your success Susan....you had it removed drastically but properly. You were not forced to "keep" it in your mouth and hope that antibiotics do the surgeon's job. Then again, it all depends on how extensive the damage is, so please folks, don't take my opinion to heart or think i am a barbarian for wanting to saw half of my jaw out.

Anyway...take care all.

Marie

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alleycat, Community Member
11/18/09 9:29am

There is alot of things said that I don't understand.  All the tests and treatments.  I do not know what bacteria was found all I know is it was CSO.  I do know that just this last friday my Doctor told me that the teeth are a factor and they found they have to be removed in order to clear this up.  Its my opinion..enough tests, enough drugs, pull the damn teeth, clean up the tissue, bone marrow, and bone.  Teeth are over rated anyway!  My favorite meal is a big juicy ribeye.  LOL.

But seriously.  If they know what the problem is I don't understand why they don't just remove it?  When I first got to the Mayo Clinic my mandible xray looked like swiss cheese.  Black spots all over it.  It is now nice clear color.  Find a different Doctor!

Cindy

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L reeves, Community Member
10/21/10 10:28pm

I am suffering as you are!  I would love to talk with you on the phone or e'mail me at lmariereeves@att.net

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yetti, Community Member
12/ 8/10 5:22pm

holy crap you guys! Don't know if you are still out there but it seems like you all need to research jawbone cavitations!

Sounds like you all have good insurance and are being run thru the mill.

It is a hole in the bone (I got mine from an infected root canal) the bone and gum heal over the hole and it won't show up on an x-ray.  There is a machine called a cavitat that can detect it.  The bacteria trapped inside the bone is toxic which can then spread through your body and yeah make you very sick and no one believes you. (We can't find anything wrong with you. How about a nice antidepressant?)

There are very few treatment options available and very few dentist willing to acknowledge the problem.  Probably worried about being sued.  Start with oregeno oil and/or collodial silver in the mouth to kill off bacteria while you are searching for treatment options.  Also try "hippie mouth wash"  mix equal parts cayenne pepper, myrhh, and goldenseal as a rinse, gargle, or applied directly to the gums.  These are the things I am using.  No cure yet but it at least keeps it from getting worse.  God Bless us all.

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JOY, Community Member
4/ 9/12 7:26pm

I HAVE OSTEO NECROSIS OF THE SKULL . IT DID NOT START IN MY JAW . MY WHOLE SKULL POPS AND CRACKS . I GET INTO SO MUCH PAIN AND I GET SO CONJUSED THAT I FELL LIKE I AM CRAZY . I CANNOT DO ALOT OF THINGS ON MY ON. I CANNOT DRIVE WELL. THE DRS HAVE NEVER SEEN IT AND THEY WONT FULLY DIONGNOS IT  DRS NEED TO WAKE UP TO RARE DIEASES.  THIS WILL KILL ME I AM GOING DOWN HILL. I KNOW OTHER PEOPLE WHO HAVE HAD IT . BUT THE DRS WANT TO ACT DOMB ABOUT IT. I NOW HAVE HAD SEASURES AND BRAIN DAMMAGE. IT JUST GOES ON AND ON . I AM GOING TO A SPECIALTY HOSPITAL BUT I MAY DIE WITHOUT BEING FULLY DIOGNOSED. I JUST FINALLY GOT SEASURE MEDICATION AND PAIN MEDICATION.  IT IS HORRIBLE. IT IS NOT INFECTED BUT GET EAR INFECTIONS OFTEN. AND NOW ITIS IN MY JAW. JUST WANTED TO TELL ABOUT IT AND READ . THANDKS JOY.

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Barbie, Community Member
12/14/09 7:28pm

Jeanine - I have spent the last four years seeing multiple doctors, three debridements of the lower mandible where a tooth was extracted, high doses antibiotics for much of that time, and six weeks of a picc line.  I have had several MRI's which show SLOW improvement of the area.  I am still experiencing a great deal of pain and am at my wit's end.  I would love to know the name of the doctor that you feel has finally helped with you with your issues.

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daniellep16, Community Member
6/ 9/11 1:23am

hi, my 4 year old daughter was diagnosed with same exact thing last year, but not from anything dental related. she was in the hospital for over a month, doctors could'nt diagnose her. Finally after 1 month of MRI's, CT scans, bone scans, x rays and a biopsy, they diagnosed her with garres sclerosing oseteomylitis of the mandible jaw bone. She was treated at home after that with a PICC line for 4 weeks and has been on oral anti biotics ever since. Such a hard thing to watch your child go through at such a young age.

 

Danielle

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Bbanna72, Community Member
7/29/11 3:02am

Hi can u e mail me at [removed] ad tell me what dr You going to cause I have same problem you have so much pain Thank you love

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TRESCA JENKINS, Community Member
11/14/11 9:05am

Jeanine,

 My daughter has been going through the same thing after a wisdom tooth removel for 1 year and 6 days now .She would love to hear from you. her email is bobbysbaby_07@hotmail.com her name is natalie she is 28, my name is tresca my email is jttknk@yahoo.com....thank you Tresca

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TRESCA JENKINS, Community Member
11/14/11 9:05am

Jeanine,

 My daughter has been going through the same thing after a wisdom tooth removel for 1 year and 6 days now .She would love to hear from you. her email is bobbysbaby_07@hotmail.com her name is natalie she is 28, my name is tresca my email is jttknk@yahoo.com....thank you Tresca

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Iryna, Community Member
2/11/14 3:18pm

Hi Jenine, 

I have the same diagnosis and my doctor wants to do a surgery. Can you please give me the name of those steroids that you were talking about. I would also like to get in touch with you for more questions. I am very desperate because the surgery is extremely expensive and risky. I would appreciate to talk to someone who has been throgh something like me. Maybe I copuld reach you at your email or phone.

Thanks and take care.

Iryna

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Feemuir, Community Member
1/ 7/10 4:41pm

Hi there.

My name is Fiona and I'm 14, and I suffer from Chronis Osteomyelitis of the jaw.

I suffer from swelling and headaches coming from the pain from my jaw, and it sounds very like what you've been going through. I also had to suffer for ages because they didn't understand what was wrong, and it was about over a year before they finally diagnosed it. I was also wondering if when it swells up, do you find it hard to open your mouth wide?

I've been treated twice for Chronic Osteomyelitis, but the pain still keeps coming back, though sadly I'm kind of getting used to it. The first time I got it treated, they opened the inside of my gum and scraped away the excess bone, but the second time they actually removed a part of the infectious bone. I've been told that it could stop occuring when I reach 16 and my body stops growing, or it could just stay forever.

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alleycat, Community Member
1/29/10 8:20pm

Hi Fiona

 

Yes Yes Yes  When I had a flare up I could not open my mouth to get food in.  I have no lower teeth at all and there is not enough bone to support dentures.  I started with osteo when I was 17.  I am now 50!  This is what I recommend.   Have your doctor's xray your lower jaw to see if there is a change in it.  I had the same procedure you decribed.  All my lower teeth except the four in front were removed.  The bone marrow removed and the bone scraped.  I was in the hospital 45 days.  The next year they found that the infection was still there and they repeated the process and removed the four remaining teeth.  The years that followed I went to a my local oral surgeon and he said the bone continued to look the same   BUT I WAS IN SUCH PAIN!!!  My face would swell right in front of my ear.  It was hot to the touch, I could not open my mouth.  The whole side of my body just ached.  I cried every night when I had the flare ups.  I diagnosed myself with a severe case of TMJ (none of the doctors knew where the pain was coming from).  I figured if it was my muscle, which it was..otherwise why could I not open my mouth??? Right.  I lived with this pain for years!

I just saw my Doctor at the Mayo Clinic to check on dental implants.  He said all the symtoms I described is what they found people with Cronic Osteo have been experiencing.  I know its hard but you have to find your own way to cope with the pain.  I did.  I feel very bad for you cuz I know what you are going through.  All I can say is hang in there, have a positive attitude!

 

Just a note to everyone else.  I have decided not to get the implants.  After reading all the entries and remembering the pain I did suffer from (not all that long ago) I decided having teeth is not worth it.  I've lived without them for 30 some years.  I guess I would feel better about my looks but hey looks don't last anyway!  LOL

 

Fiona my email  cindytreml@yahoo.com  would be happy to hear from you.

 

Cindy

 

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Theresa, Community Member
2/26/10 2:37am

I have the exact same symptoms, and I finally decided to go t the doctor, and I was diagnosed with TMJ, I thought I was having trouble with my ears but, it is so close to the jaw bone, that is why the pressure in the ears. Also the head aches are related to the TMJ also. look up on the internet about TMJ and the symptoms of it, you will see you have all the symptoms. Just trying to help.

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kristina, Community Member
4/ 9/10 10:01pm

Hey, I had the same exact thing for 2 years. I had every dental surgery and scan anyone could ever imagine. I even had IV treatment for months. However, it turned out to be a tight jaw muscle on the right that did not resolve until I wore a hard splint for several months. I had the exact same feeling of pressure by my ear that you describe. I had every tooth in my mouth root canaled because I thought it was infection. I even pulled a tooth. Thwe whole time it was a tight jaw muscle that created the swelling an d feeling of pressure.

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bfu, Community Member
4/10/10 8:40am

Thnak you so much to everyone who responded i recently went ot yet another specialist and they found that it was indeed TMJ but because i had gone so long and the added stress of not feeling well cause me to clench and grind my teeth harder and harder without knowing it my muscels are detorated in the lower right side of my jaw and they are spasming so fast i have done some physical therapy and the splint i have been wearing for months i have had some relief but the next thing which my doctor says im a very rare case where botox injections into the muscle might help nut if that does not work i will deal with the pain forever but the botox only lasts 3 months its hard but im glad to know what is going on

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carole, Community Member
4/26/10 2:13am

I have suffered from what you are describing.  My oral surgeon missed it for months, but when the symptoms went away with oral antibiotics and then started coming back again I went back to the doctor.  He then told me I had to start IV antibiotics and sent me to a communicative disease doctor.  I got so bad that I was sent to the ER when the Osteomeylitis was diagnosed by CT scan.   I am now on IV that I do at home for 6 wks.  After several days on the IV the symptoms started going away.   I will then insist on a repeat CT scan after the 6 weeks are up to make sure the infection is gone this time.  I sincerely hope you find proper help soon.  See a new oral surgeon.

 

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Smiley, Community Member
4/28/10 10:35am

I have osteomyelitis of the mandible and maxilla.  You should see Dr. Wesley Shankland in westerfille Ohio.  I think he is the best doctor in the US and as been treating osteomyelitis and cavitation of the Jaw since 1986. I have had to have numerous surgeries on my jaw. Laughing I am still seeing him and he is saving my life. 

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Marie, Community Member
4/30/10 3:36am

Dear Smiley,

You are very fortunate to be in the hands of Dr. Shankland. He is one of the few but many who acknowledge NICO, while others laugh at the though of it and brush patients away who dare to mention it. I believe that NICO is a far more common occurence and cause of more facial pain than experts want to let on. So many people smoke, drink alcohol beyond excess, have blood clotting problems, poor dietary habits etc...all of which predisposes patients to the risk of developing NICO, or perhaps osteomyelitis. My oral surgeon runs a TMJ clinic, where people turn up with various forms of orofacial pain, thinking it must be TMJ, or an ENT related issue, or a bad tooth. He told me he is horrified by the number of poorly diagnosed patients who actually have osteo (he does not believe in NICO, but I firmly believe that most chronic osteo patients, perhaps all in fact have NICO as well) which is causing various referred pain.

Anyway, I feel for everyone who happens to get tangled up in this mess....the pain is excruciating. I am battling with constant flare-ups at the moment from the sudden switch from spring to summery weather. I literally feel how my jaw is rotting and it is these exact feelings of extreme pain and rotting, neverending throbbing, nerve numbness, eye pain, nose pain, etc. that led me to believe that I either have NICO or osteo about 4 years ago after about one-year from the beginning of the nightmare. I have read a great deal of Shankland's work and even went to the extremes of comparing my biopsy results with those of patients he biopsied with NICO and found far too many similarities. Anyway....I finally won the 5 year battle and received a diagnosis recently, however, I am still waiting for the treatment plan. I do not believe that simply administering ATB will save my case. It has been too long and the damage visible on the CT dierctly affects the mandibular nerve, which explains the excruciating pain. I am praying for my oral surgeon to come up with a proper solution that will rid me of the source of the pain.....working on getting rid of the fixed mental pain will be another battle, but the source needs to go...

I would be curious to hear how others believe the developed CSO, CDSO, what their predispositions are. I don't believe in it simply being a faulty root canal, otherwise 90% of the population would have osteo. There is always an underlying health issue. Mine are the EBV I was battling with and didn't know was at its peak during wisdom tooth extraction, plus blood clotting problems.

Take care everyone...

Let us know how you are all doing. Some have not posted for a while. I hope all is well with everyone.

Marie

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Smiley, Community Member
4/30/10 8:32am

Dr. Shankland does cavitation surgery and I have had to have numerous surgeries.  Why don't you see him?  He is the best.  I went to two other doctors who messed up my jaw and Dr. Shankland is so skilled he was able to fix the problems they created.  Dr. Shankland is who you should see.

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Lisa D., Community Member
12/18/11 12:03pm

I don't really feel like going through my own dental incident right now on here...but here is information everybody should be thinking through....

Trauma to the trigeminal nerve and trigeminal neuralgia are referred to by doctors as the "suicide disease" and many of you understand what this feels like. Look it up. These sufferers end up killing themselves or bed-ridden on morphine and anti-depressants. Osteomyelitis of the jaw, paraformaldehyde or N2 paste or Sergenti paste or sergenti method root canal filler, MS, trigeminal nerve damage, Lou Gerig's disease, fossi jaw after a tooth extraction, Toxic Shock Syndrome, burned or necrotic tissue, lip/face parathesia, "burning mouth syndrome", cavatations in the jaw, NICO, IBS, fibromyalgia, Srojen's disease, EBV, Lupus, xerostomia, chemical poisoning (bisphosphates, dental "chlorox", phosphorus, mercury, etc.), Bell's palsy, and jaw trauma. What did I forget to include? We all have one thing in common. We were generally in good health, WE WENT TO A DENTIST, and the nightmare began. We go back and forth between dentists and doctors and no one seems to want to get involved and wants to put us on anti-depressants and antibiotics. The sufferers with the best outcomes are avoiding pain medications and are taking on special diets, focusing on getting cone beam scans of their mouths/jaws, many talk about oxygen therapy w/wo antibiotics and anti-virals, getting as much of the material as possible out of their mouths, and heading to San Francisco, Mayo clinic, California, some to Ohio...We do need a support group, to organize doctors/dentists, special diets and remedies/treatments that help...

Here is the diet that I have seen most people talk about and helped me or some I stumbled upon by trial and error...

NO soda pop at all, NO sugar, No bread/pasta/tortillas. No preservatives, No nitrate/nitrites, No partially hydrogenated oil, No MSG, No salt, No sugar substitutes. Nothing, absolutely nothing in a box or can that stores in a cabinet! This is so difficult! But many of you can't eat barely at all anyways in the first phase. I can eat many of these now on a limited basis...just don't do it for a year!!!

Try this...Water, Cranberry/cherry juice Ocean Spray with beet juice, real orange juice as much as possible (Trader Joe's or Florida Natural's extra pulp) all day long, eggs and trader Joe no nitrate/nitite bacon for breakfast with fruit and apples. Progresso no MSG pea soup. Chicken, rice, sweet potatoe, real unsalted butter, and hodgepodge frozen veggies from Trader Joes or any real vegetables and Sweet Tomatoes fresh foods for large variety of fresh vegetables. I ate this every day for over a year. Before, I ate anything I wanted. At first, I could barely keep one egg down and 1/2 cup of pea soup. Egg is where to start.

I've heard oregano and garlic oil and chayenne pepper as helpful. Many people say Tom's cranberry toothpaste.

Lifestyle...No sun, walk as much as you can, breath cold fresh air, and avoid cleaning chemicals.

Doctors??? Dentists??? I have no idea, but am am not giving up. I have come very far and my ordeal began two years ago!

 

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jenneferle, Community Member
8/ 6/10 10:01pm

I have some questions for you if you will please answer.  I was just diagnosed and have been reading horror stories on the internet.  You said you have had numerous surgeries.  How many are numerous and why so many?  Did you have to have any teeth removed?  When you had your surgeries did you have to stay at the hospital or was it outpatient.  How has this affacted your job?  Sorry I have so many questions.  I just found out today and I am so scared.  It is Friday and my oral surgeon closed at 2:00 so he didn't tell me much.  I have a bone scan on Wednesday.  Thanks, Jen

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Smiley, Community Member
11/ 2/10 10:24pm

I have had numerous teeth removed and about 30 surgeries.  I had a unique problem and had to have two salivary glands removed also but that being said I am telling you I would go to no one else but Dr. Shankland.  I did not have to stay in the hospital.  luckily my husband and I are self employed and own a heating and air conditioning business. You should be able to recover from any surgeries very quicky.  I take care of my grandson one day a week and have never not been able to care for him.  I live in Virginia and drive to Ohio to see Dr. Shankland,  He is in Westerville, OH.  My husband and I stay at a hotel over night leave to go back to VA the day after surgery.  Dr. Shankland's staff is the best ever.  I have had bone scans and MRI's and they are not good for diagnosis.  You need a CAVITAT scan a panoramic and an experienced doctor.  Dr. Shankland has been doing this since 1986 and is the best on the planet.  Tell him Ann told you to call. 

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SLF4591, Community Member
11/ 4/10 9:17am

Ann or anyone who's been treated by Dr. Shankland, could you please post back to me?

 

I had a botched root canal at age 12 or 13 where silver points were pushed through my roots and into my maxillary sinus.  I'm 56 now, and in Aug, 2009, I had the tooth removed in an attempt to cure my continued infection in that one sinus, and improve my overall health (I have HPA axis problems and the infections were making me frequently adrenallly insufficient).  For decades, I'd complained of discomfort, swelling from that tooth and my former dentist said the x rays looked fine, but my wonderful new dentist was horrified to find I had silver points.  An endodontist told me ("these have been causing you problems since the day they went in.")

 

No problems ever showed up on C-T scans or on x rays, but a granuloma fell out during the tooth excision (last molar, upper right) and the whole area was covered with heavy black oxidation, which had also come out of the roots during a re root canal months before.  The surgeon did no debreding, tissue biopsies, just placed a collagen plug and stitched me up, and my health and life have been in a horrid downward spiral ever since, with a hospitalization this past Sept. for pneumonia with a fever of 104.7, small intestine bacterial overgrowth and severe cognitive and vision problems, all sorts of terrible new findings (white spots throughout my brain) since the surgery.   My jaw and mandible are sore, sometimes swell so others notice it, but got dramatically better in the hospital on IV antibiotics (my pneumonia turned out to be viral).

 

I'm on IV abx now, and my cognition and energy are greatly improved, but my ID doc will not continue it.  Because my MRIs and C-Ts don't show bone damage (I have bizarrely high bone mass, a genetic condition, almost off the charts), no one will operate to investigate the bone, and my symptoms are being dismissed.

 

I am in metro NY and would like to hear about any tri state surgeons or dentists who diagnose jaw infections clinically, or who will do biopsy.  I can travel, but would rather not unless I have no choice.  

 

I don't know what to believe about Dr. Shankland; I know a lot of good doctors get smeared by orthodoxy, but also that there are a lot of medical opportunists out there; I don't know who to believe but this situation nearly killed me two months ago, and I need referrals.

 

Thanks for all the information shared here.  I'm open to referrals anywhere in the country, but must be to those who will diagnose based upon history and symptoms.

 

Moderator's Note: Please do not post personal information such as email addresses and phone numbers.

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nikia, Community Member
12/21/10 2:20pm

I was going thru the same thing you went thru and i understand your pain.I was told the same things you were told and all that was a lie.I was dealing with that issue for ten years they finally found the problem with a c-t scan.I had a cyst in my lower jaw bone and it had to be taken out asap.So i have had my seven surgerys and know im recovering from my last i just want to say keep going to the hospital and tell them to do a ct scan and they will find the problem.I never gave up u can't give up and you can't live with the pain cause everyday theres a new pain or your face is swollon

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jkhamz, Community Member
11/ 8/11 2:31pm

hey there, hope you are feeling better now. soon the swelling stops and with medications you can control the problem. good luck

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dani0827, Community Member
5/22/12 9:00pm
It sounds like you have osteomyelitis of the mandible. I had my wisdom teeth out in January, which turned into dry socket and from that I got the osteomyelitis. I also have lupus which is a autoimmune disease. I have the same exact symptoms that you have. I have been on all different antibiotics and nothing has worked to stop osteomyelitis. I had four debridements which is where they clean out the infection till they hit healthy bone. The last surgery that I had was a major surgery where they removed 80% of my jaw bone including two teeth. They did biopsies on all the infected bone and I was put on three different antibiotics and one antifungal medicine. I was doing great and then I had to stop the medication because of side effects including two seizures. Two days after I stopped the osteomyelitis came back full force. So what they had too do is put a PICC line in me and I go everyday to the hospital for an antibiotic infusion; this will go on for 6-8 weeks. I am also on some heavy duty pain medicine which helps take the edge off but by no means takes the pain completely away. I have lupus and I get very painful flare-ups every couple of years but in no way does the pain even compare to osteomyelitis of the mandible. Osteo of the mandible is extremely rare and my oral surgeon believes that I got this because of chronic steroid use for lupus and just the lupus itself. I live in a urban area outside of NYC and my oral surgeon said this was the first case of osteomyelitis that he has ever seen. They did a MRI with and w/out contrast and also a full scale dental X-ray and that is how they see all the dead bone. Hope this helps! Please e-mail me at dewad@aol.com Reply
GF, Community Member
9/23/10 3:19pm

I just finished reading all your stories.  I was diagnosed with chronic sclerosing osteomyelitis after only four months of investigation. The worst four months of my life.  Only you would know how horrible the pain could be.  I think all our doctors should read these posts as well.  My oral surgeon told me he has never even had a cavity so he can't imagine how painful this is.  I get the feeling he doesn't have any other patients with this.  He keeps recommending HBOT.  After reading your posts I don't think it will help, so I'm not going to go through with it.  I am seeing a new oral surgeon soon.  I'm also going to pain management.  I'm surprised no one has mentioned that.  I've had 2 PICC and a four week oral antibiotic course, two steroid courses and debridement.  I miscarried at eight weeks and don't think I'll be getting pregnant again anytime soon due to all the meds. I'm on.  Thank you everyone for sharing your stories.  I live in the Pittsburgh area if anyone wants to commiserate.

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cat c., Community Member
10/ 1/10 11:30pm

I am a Hyperbaric Tech at a wound center and we treat Osteomyelitis (Chronic) of all bones in the Hyperbaric Chamber.  Treatment is at 2.5 ATA for threshold of 60 treatments. That's monday - friday   90 minutes at treatment order depth with air breaks for a total of approx 2.5 hours.  We also treat osteoradionecrosis of the jaw. Same treatment regimen except usually these patients are diagnosis when getting teeth extracted. The oral surgeon orders Marx Protocal which is 20 pre operative treatment and 10 post operative treatments.  We have had sucess healing all osteomyelitis patients. I hope this helps.

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Marie, Community Member
10/21/10 11:37pm

After 45 HBOT dives, my conditioned worsened. I suffer from actinomycotic CSO, affecting the mandible and temporal bone. My oral surgeon treats CSO using the Marx method but has come to the conclusion that HBOT is by no means the solution for everyone. The extreme pressure while "diving" can cause more damage than good to bone structure and blood supply structure.

Otherwise, I am at the end of my 6 month IV therapy and have had no improvement thus far....no wonder after 5 years of trying to get a diagnosis. I have undergone two decortications with about 75% of the mandible removed (the buccal side). But I personally feel the brew of bacteria (total of 4, of which one is actinomyces israeli) is winning over the Penicillin. I felt an improvement the first month but things have gradually slid back into their old path and the intensity of pain has increased. I am beginning to believe that excision of the entire bone is the only solution for CSO or any form of chronic osteo. Modern day medicine trys to save everything it can, while in the "good old days" amputation was the option of choice for bone infections. Each case is individual, each person has had a different course of illness and should be treated accordingly. So, please remember, these are my personal feelings about my own case, and I do not want to scare others. I have had a brutal 5 years, feeling extremely ill off an on, often feeling I would not see the light of day. I owe this to the actinomyces and other bugs which have created a very powerful combination in my body, causing various adrenal, kidney, hormonal, digestive reactions to the cocktail.

Take care everyone and do not give up fighting. There is very little knowledge out there about the problem and very few experts who actually have experience or courage to treat osteo. Even once you have a diagnosis, I still find it hard to get the supporting help from other doctors, such as internal med, neurologists, endocrinologists, ENTs etc. have no experience with CSO and prefer to keep their hands off.

Regards,

Marie

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GF, Community Member
10/28/10 4:04pm

Wow, I really feel for you.  I myself have suffered just over a year and it's been HELL.  I cannot imagine this going on for as long as yours has.  I hope you receive some relief soon.  It reallys helps to be able to talk to others who know what you're going through.  Hang in there.  Gina

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Bridget, Community Member
1/23/12 12:44am
Marie, are you still suffering? I too have CBO with actinomycetes along with several other bacteria. I have had three debridememts, three teeth pulled, four root canals, HBO, 6 PICC lines and am on amoxicillin. I was on 4gm of augmentin but my bone marrow is now suppressed and my white counts are dropping to dangerous levels so I was put on amoxicillin and am now receiving Neulasta shots to drive my white counts up in an effort to fight this infection. I finally ended up having a Partial maxillary resection in October bc the infectiOn was not clearing. I was doing well until they lowered my antibiotic down to amoxicillin. Now my jaw pain is back. It stops me dead in my tracks at times, the deep pain and will bring me to tears midconversation. I am scheduled for a bone scan in two weeks and am fearful of another surgery and more teeth being pulled. Any hope you can offer would be greatly appreciated. God Bless. Reply
Ms. Anita, Community Member
12/28/12 6:35pm

I also have chronic  osteomyelitis of the jaw with an oral antral fistula. I have been dealing with this since 2009. I had a bridge fall out. and had emergency surgery, which caused the oral antral fistula ( this is an opening from the palate to the sinuses). The diagnosis was very unclear but I was told I had osteonecrosis of the jaw and fistula. I have been without any treatment and no necessary appliance to cover the opening in my mouth, due to our great healthcare system. I use as tampon to fill the opening of the fistula in order to breath talk eat. I have now reached the chronic stage of this disease.

The last options that were given to me were Hyperbaric Oxygen treatment, which also has not started dut to the last results of CT Scan.

I am looking for any information and supprt I can find in dealing with this illness.

Thank you.

Anita

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Singler744, Community Member
12/11/08 11:04pm

Hi, I was just recently diagnosed with Chronic Osteomyelitis in my Jaw.  I will be seeing a specialist next month.  If I may can I ask how long you have suffered from this.  Yeah I know when I was sick the first time I have thought in the months after that how wonderful a support group would be or even just to talk with someone who has had or has a similar problem.

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Laura, Community Member
1/21/09 9:40pm

My husband has chronic osteomyelitis of the mandible and while I should not speak for him, I think he could stand some peer support.  Were you able to get a support group going?

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annebeckett, Community Member
2/19/09 6:11pm

Hey, Wendy.

Sorry I missed your post and your email 'til now (months later),, but, if you're anything like me, you're still dealing with it.  So, I sent you a pm with my real email addy;  write if you want to.

Anne

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LisaH, Community Member
3/ 6/09 7:30pm

Fellow Osteomylitis Sufferers of the Mandible (Jaw Bone).....

 

My case began about two years ago when I had a severe case of Mononucleosis. Six months after the Mono I began having significant dental issues.

 

I was diagnosed with Chronic Refractory Osteomyelitis in my left mandible this past October 2008 after having a tooth extraction. I had extensive periodontal work on the same tooth that I ultimately lost about 18 months ago (after the Mono) which is how my docs think I may have contracted the Osteomyelitis.

I had a jaw/ bone biopsy in December after an MRI and Nuclear scans and more blood work than I can keep track of. Started on IV antibiotics (first Ceftrioxone and Flagyl and now Clindamycin) on December 6th 2008 and am still on them with a picc line.

I still have jaw pain. Greatly diminshed but none the less still there.

I also went through 21 hyperbaric oxygen chamber treatments.

 

My treatment has largely been at Stanford University Medical Center (one of the best) but I'm now considering getting another opinion at UCSF to see if there is anything else that can be done. This is a very slow recovery process....

My infectious disease doc has stated that this is a 6-12 month process. Wow!

 

Since it's relatively rare, it's sad but eye opening to know that there are others going through this. My heart goes out to all of you.

 

Lisa

 

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kelly, Community Member
5/18/09 6:19pm

Hi Lisa,

 

i am going thru a very similar situation as you are and I would appreciate any advice as I have just been diagnosed and am beginning the picc line process.  I am going to Stanford as well but thought UCSF may be another option too.  I was wondering who your Oral Surgeon is or who specializes in this area in the Bay Area.  I would love any advice you could give at this time.

 

I just started on the IV drug Ceftrioxone today and they will couple that with an oral antibiotic.  They are considering hyperbaric treatments as well. 

 

I hope you are feeling a bit better. 

 

Kelly

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LisaH, Community Member
6/ 1/09 7:50pm

Hi Kelly,

 

Very sorry to hear that you're going through this as well.

I've been dealing with this since September 2008 and will now be going up to UCSF for another opinion and to see what else can be done.

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LisaH, Community Member
6/ 1/09 8:02pm

Hi Kelly,

 

Didn't quite finish my last email response....

 

It took awhile for me to truly understand that this is a long process (12 months) and very difficult to get rid of. The jaw bone does not have great oxygen supply.

 

My oral surgeon was the one who first diagnosed me but then he referred me to Stanford.

Not sure if you've had a biopsy yet, but Richard Goode, MD (ENT and Facial Reconstuctive surgeon) did mine at Stanford and he was excellent. He has a great reputation in Northern California.

Ceftrioxone is the best antibiotic for jaw, but it also depends on what type of bacteria caused your Osteomyelitis. I was on that for a month and had to be switched to Clidamycin after developing an allergic reaction.

After 6 months, I just had my PICC line removed and am only on oral Clindamycin.

 

I also did 21 hyperbaric treatments. Towards the end I did start to notice a slight improvement. Make sure to get pre-approval in writing from your insurance as my insurance said they covered and are now fighting the claims. Some only cover Osteonecrosis whch means the bone has died. Not sure what hyperbaric would do at that point since necrotic bone typically has to be surgically removed.

 

I'm still not feeling great physically but hope to get more information after I see an Infectious disease doc at UCSF.

 

Good luck to you and stay optimistic. You will get well!! 

Lisa

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Amy, Community Member
7/21/09 11:19am

Lisa,

I had surgery on my lower jaw back in 7/04.  I've had problems with disconfort since then.  In Jan. 08 I became so sick with pain that my medical doctor sent me in for an MRI.  The doctor who read the MRI said it was Osteomyelitis.  Prior to that I seen dentists to find an answer but no luck.  I took Cipro and Doxy for about 3 months.  I was o.k. until May of 09. Pain is back. I have been to UCSF three times and they have been no help because I've not had fever or puss. They will not go by the MRI or the medical diagnosis given to me by my medical doctor.  I was there last week with pain, swelling, and only able to open my mouth enough to put a spoon inside. UCSF doctor told me that he couldn't do anything for me.  That a pain doctor would be my best comfort. 

 

Amy

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LisaH, Community Member
7/21/09 11:42pm

Hi Amy,

 

After my "second opinion" at UCSF, I recommend Stanford even more highly. My experience with Stanford has been very positive. The Infectious docs at Stanford listen, take what I have to say seriously and I've improved. The Infectious disease doc I saw at UCSF was pretty condenscending actually.

Prior to this I had to fire one of my docs for telling me that I was being " too proactive" because I kept researching Osteomyelitis and asking a lot of questions. Trust your instincts. 

Your primary physician can send a referral for you to be seen at Stanford. When he/ she sends the referral, ask that they stress the urgency and you'll be seen sooner since there is a really long wait to get in.

The ENT I saw at Stanford, Dr Richard Goode may also be a good place to start. He did my jaw surgery (biopsy) ,has a great reputation and then referred me over to the Infectious disease group who started me on IV antibiotics the next day. Dr Goode is one of the wonderful "old school" docs who listen and really care.

Once you get on the right antibiotic with the proper treatment, you will begin to feel better.

Keep going until you get answers and the help you need.

 

Lisa ~

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OreoDancer, Community Member
7/28/09 3:20am

Lisa,

 

Sorry for my first e mail. I see you answered many of my questions, but I hadn't read any further when I sent my e mail. How did the doc determine osteomyelitis was it present on CT or MRI?

 

 

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Barbie, Community Member
2/ 8/10 1:38pm

Lisa - how are you doing at this juncture?  Are you still seeing your doctors at Stanford??

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LisaH, Community Member
2/ 8/10 9:58pm

Hi Barbie,

Yes, still seeing my docs at Stanford. Going through more scans- MRI, CT and a series of Nuclear scans. Still having jaw pain after 18 months and months and months of antibiotics.

Lisa

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LisaH, Community Member
2/ 8/10 9:58pm

Hi Barbie,

Yes, still seeing my docs at Stanford. Going through more scans- MRI, CT and a series of Nuclear scans. Still having jaw pain after 18 months and months and months of antibiotics.

Lisa

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Barbie, Community Member
2/ 9/10 2:06am

Lisa - So sorry to hear that you're not doing better.  I would love to have you keep in touch.  Do you plan to go somewhere besides the doctors you are seeing???

 

Barbie

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LisaH, Community Member
2/ 9/10 4:49pm

Thank you!

I'm hanging in there though.

My chronic fatigue (CFDS) on top of Osteo is a part of why I continue to deal with this I think and why I'm sooo darn tired..

I really like my Infectious Disease doc at Stanford and feel that he is incredibly pro-active and constantly trying to help me.

I feel pretty lucky.

What's happening with you?

Lisa

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Barbie, Community Member
2/10/10 11:54am

Lisa - You can contact me directly at ramsland3986@hotmail.com

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OreoDancer, Community Member
7/28/09 3:15am

Hi Lisa. I just found this site as I was searching to see if there is anything new in the treatment of chronic osteomyelitis of the jawbone. I would love to connect with you to ask some questions about who treated you, how they diagnosed you, etc. Is it possible to connect via e mail?

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Jme26, Community Member
4/20/09 4:28pm

I have been fighting this Osteomyelitis in my left jaw bone since a wisdom tooth was taken out in 2003. I had done everything that has been said on this post, 5 debribments, scans, picc lines with antibiotics, and the hyper chamber, i did 35 dives and then i was in remission. All that took about 2 1/2 years. I had been good until about 4 months ago. I noticed that "feeling" coming back and sure enough, I went to my oral Surg. today and it is back. I am going to have a debribment in 2 weeks and be put on antibiotics again. I really don't want to go through all this again. I wouls love to be able to talk to ppl that have been through this before. It would really help.

 

Jme

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LisaH, Community Member
6/ 1/09 8:08pm

Hi Jme26,

 

Wow ! 2 1/2 years.

 

I'm curious since my experince is much more recent...

Were you able to work at a job during this time?

** I'm still not working.

How have you felt physically overall?

**

Have you had chronic jaw pain and lost teeth?

 

This is a very tedious process I have to say.

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OreoDancer, Community Member
7/29/09 2:52am

Hi. Are you still around? Would love to connect to talk about what has happened since two years ago. I also have osteo of the jaw and had pretty much the same treatment as you. Not better.

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Jme26, Community Member
11/17/09 6:11pm

Hi, I ended up having a debribment and it went ok, but it seems to be acting up again. There isnothing we can do right now since i am pregnant. We will wait and see how things are after March 2010. How did you get your osteo?

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alleycat, Community Member
11/17/09 8:57pm

Hi

Congrats on the baby.  I will have to look to see what a debribment is.. Like I said its been almost 30 yrs since I had the infection.  The pain I suffered from following that was from TMJ which was a result of the CSO.  My Doctor attacked it right away by removing the teeth, scraped away the tissue and bone and then removed the marrow.  Packed it open and let it heal from the inside out.  I was in the hospital for 45 days.  The process had to be repeated twice because the first time he thought he could save my lower front teeth. 

The CSO was taken care of.  It was the TMJ that bothered me for the twenty years following.  I was explaining to Marie that I had a 1, 2 and 3 year old at home at worked midnights.  Stress is a major factor in the pain.

The first thing that needs to be done is to get rid of the infection.  My Doctor said that If I went 20yrs without a re-occuring infection then he would consider it gone.

Hang in there.

Cindy

 

 

 

 

 

 

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alleycat, Community Member
11/17/09 10:56am

Hi JME

 

If your still out there and would like to talk I am willing.  I was amazed to find this site.  I really thought there were only 5 or 6 people who have gone through this.  Please let me know I think I have alot to offer.

 

Cindy

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Jme26, Community Member
11/17/09 5:49pm

What did you want to talk about?

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OreoDancer, Community Member
11/18/09 1:41am

Cindy,

 

I would actually love to talk to you. Can you e mail me at max10131997@hotmail.com? I have osteo of the jaw and have had it since around 2002-2003. I am in bad shape lately. Another flare up that I couldn't get a handle on. Seems to be subsiding a bit. I am VERY interested in the treatment you had. Healing from the inside out seems to be the right way to do this, but it isn't don't because no one understands this illness. It is so crazy. Would love to connect and see if there is any information/assistance you can offer that I don't already know about this nightmare.

 

Susan

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LisaH, Community Member
6/ 1/09 8:25pm

Hi Wendy,

 

Not sure where you are located geographically, but I would definitely be interested in a support group and it sounds as though we're not alone given the other postings to this site.

 

Lisa

 

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melinda Tully, Community Member
6/ 7/09 11:45am

Hi Wendy!!! 

I hope you get to read this even though your post was from last year! My name is Melinda and I've had osteomyelitis in my lower right mandible for 10 years! Yet it wasn't diagnosed until february of last year! So since then I've had all the bone scans, mri's and antibiotic treatments and surgeries. I'm still miserable and I totally agree with you about hoping that no one else is suffering from this horrific disease! But I'm sure there are more and I want to help form a support group with you! Maybe we can start a blog site to help. And people can post messages (since I know it hurts for me to even talk most of the time). 

So about my jaw, right now I can hardly even open it. I can open it about one finger's width wide, enough to force a spoon through with oatmeal or yogurt and such. I am absolutely miserable with pain but force myself to do normal activities which end up making me awfully exhausted by the end of the day and kind of irritable (poor husband has to deal with me). 

The first course of action last year was a surgery to biopsy some bone and do a little debridement. The oral surgeon had to tear and stretch the jaw muscle in order to get back where the problem was and I think I still have problems with my jaw muscle. I've had a couple more surgeries since then (more debridement and one to remove an upper molar that had been descending down and pushing on my gum tissue near the infection site which was causing pain and perhaps a secondary infection). The reason the upper molar was descending down was because I had my lower molar removed about four years ago when an abscess formed, and my right cheek swelled up like a golf ball. And since the lower molar was gone, there was nothing for my upper molar to rest on and so slowly, over the years, it descended down eventually started pushing on the sensitive area on my jaw. 

I've been on oral antibiotics for 4-6 week treatments about 3 and a half separate times and have been on i.v. antibiotics for a 6 week period that seemed to have given me about 3 months of relief (it was heaven while it lasted). But about 3 and a half months ago the pain came back and I went back on antibiotics and then switched to another antibiotic (which made me really sick so I stopped). I had a blood test recently to check my SED rate and it came up normal. But oddly enough, I'm still having extreme pain and now my right jaw is EXTREMELY swollen. I'm pretty nervous about it and have decided to go back to Cedar Sinai in L.A. back to the doctor who diagnosed it. He might have some insight on how to manage the pain. All my doctors (here in Santa Barbara) seem to think I'll have this for the rest of my life and that antibiotics and surgery are the only answer. I've heard a lot of good things about hyperbaric oxygen treatments that I have yet to try. But the a lot of doctors seem to frown on it because there hasn't been any research done or facts presented that pertain to erradicating osteomyelitis. 

Sorry I've typed so much, I could go on forever. My 28th birthday is in a couple weeks and I've had this problem for 10 years. I don't want to live like this for the rest of my life! 

Thanks for voicing your problem too and I hope to be in touch with you soon! 

 

Warmly,

Melinda

Reply
LisaH, Community Member
6/10/09 11:57pm

Hi Melinda,

 

This is Lisa not Wendy. :-)

I was diagnosed last November and had jaw surgery and a biopsy in December.

I had the same situation of not being able to open my mouth except to barely squeeze in a spoon with some soft food . The pain was extreme.

My Ear Nose and Throat doc at Stanford in Northern California had me doing physical therapy (shoving a stack of tongue depressors into open my mouth- which I only did for about a week due to the pain it caused) but I can now open my mouth just fine and am completely back to normal in terms of what I can eat. My pain level has also diminshed significantly as well.

I was however on IV antobiotics with a picc line for almost five months- NOT just the six weeks that everyone told me in the beginning of this. I think it made a huge difference with my healing. I'm still on oral Clindamycin at the same dosage that the IV was - 600 mg three times a day.

Keep going until you find doctors who will treat you and you feel comfortable with the care you're receiving. Listen to your instincts. I literally had to fire one of my doctors along the way because he felt I was "being too pro-active". I asked a lot of questions and did a lot of research.

Now that you've finally been diagnosed you will get well. Hang in there!

 

Lisa~

 

Reply
Leslie, Community Member
6/19/09 9:55am

Hi

I am a mother of a ten year old who was just diagnosed last month with sclerosing osteomyelitis of Garre.  It is in her right jaw.  She is on IV antibiotics now, with no pain.  I am curious how some of you think this occurs.  My daughter doesnot have any cavities, but does have dental crowding.  She had strep throat and an ear infection  one week prior to having jaw pain, swelling, and having trouble opening her mouth.  The doctors are not sure how she may have developed this, but think it has been there for a while, due to the growth of new bone.  Just curious on any thoughts.  It is something I had never heard of before, and understand that it is very rare.  Thanks Leslie  

Reply
Jeanine, Community Member
11/ 2/09 9:36am

Hi Leslie,

 

I too was diagnosed with the same, only it is in my lower left jaw.  I have been in pain with swelling on and off since 2004.  I have been to several doctors and on many antibiotics including a PIC line, had several bone scans, CAT scans, 1 debridement and a biopsy.  Yes this condition/disease is very rare.  That's the scary part because they really don't know how far this can go. I worry that it could spread to skull.  My doctor said there are no no cases of that happening.  Not very encouraging considering the seriousness of it.  He is treating me with steroids.  The only thing that helped my pain was Motrin/Advil.  I don't know what I would do without them.  In addition to a quick acting pain reliever it is also an anti-inflamatory med.  My biopsy was in 9/09 and I have been on 3 doses of steroids since.  They want to only prescribe them when necessary and according to the symptoms at that time.  I have to say they work almost immediately.  The key is to give the lowest dosage possible while still be effective.  This condition goes in and out of remission for lack of a better term.  The longest I went symptom free was 7 months.  During the latest episode I have been in pain with some swelling on an off since 8/09.  I am sure the biopsy did not help matters and I am hoping in time it subsides.  I will follow up with an office visit with dr who did biopsy in Dec 09.  I call him when I need him to call in a prescription of steroids.  I still have to confer with my infectious disease doctor to see if he thinks I should also be taking antibiotics.  What is the course of treatment for your daughter? I wish her the best.  Stay strong and informed.

 

Sincerely,

Jeanine

Reply
Marie, Community Member
11/16/09 1:33pm

Dear Jeanine,

Read my other post below....

If my diagnosis of Chronic Sclerosing Osteo is confirmed, then yes, mine spread from my upper jaw to my frontal bone....there are case online from e.g India. It is rare but it is possible. My left temporal bone is affected and my right lower mandible. My biopsy results came back with messed up bone marrow (just as the other 3 biopsies) plus 6 delicious sounding bacteria. Only two are known to me. The lab now needs to distinguish whether it really was in the bone sample, or whether that brew of bacteria came from my saliva. My maxfac surgeon is a bit shocked....he has been betting on Fibrous dysplasia for two years while I always tried showing him in a different direction claiming "something is alive in me." Not many maxfac surgeons are willing to help out here, so even though the process is a lengthy one with him, I know he will do everything possible to help once the diagnosis is confirmed. I am angry with previous maxfac quacks for not taking me seriously when I told them about the lump growing on my head and the intense jaw pain. They all told me to go to the shrink and have my head checks. I have been sick in and out for 4 years with extreme cranial pressure, and jaw/facial pain. My wonky TMJs are contributing to some of it and I will undergo arthroscopy on Monday to give them a boost. I am petite and fragile so my maxfac is wary of using antibiotics, but without them....I just don't know.

Take care everyone, my heart goes out to everyone suffering from osteo...it is living hell that folks don't seem to understand.

Marie

Reply
OreoDancer, Community Member
10/18/09 4:05pm

Lisa,

 

It has been a while since your response to Melinda. I was wondering how you are doing. I think I wrote to you a few months ago and then I just never followed up on this site. I got busy with my life and my meds were working so I was moving on. Not so much now. I am in a bad flare up now.

Reply
Jaderaide, Community Member
6/30/09 2:37am

hey!

 

I have been dealing with osteo since the age of 6... I am now 19... so quite a while... we have tried various treatments... from the least invasive, oral antibiotics ( clindamycin ) then intravenous antiobiotics via picc line... then debridement, the most invasive, I suppose... I have had 2 saucerizations and am expecting a third... the second time it was in conjunction with immune suppressants which were reccomended by an infectious disease doctor... though I can say that the random flare ups are annoying i have learned to live with it... until recently... just today i went to UCLA which is where my maxiofacial surgeon works and teaches... and i was told that it had spread to my right side ( before it was thought to be localized on the left side ) though we have never successfully grown a culture and there is no logical reason for me to have this, my doctor seems pretty confident in his diagnosis while it still wavers on occasion with the thought that it could possibly be fibrosdysplasia... at this point even my doctor is perplexed and worried... I am currently running out of treatment options... and i know i am not really a positive story... the reality of chronic osteo is that it is hard to treat and the blood flow in the mandibular area isn't that great... the most effective treatment thus far has been surgery... within the month i will have another surgery and perhaps another round of iv drugs... however, I hope that i can be helpful in letting you know my experience thus far as i am a veteran of sorts... not that i am proud of it... but i do know that there are pro's and con's of each treatment and i can tell you what i think they are, obviously i am not certified to give a clinical opinion...

Reply
Marie, Community Member
9/ 6/09 7:50am

Hiya!
I am probably a fibrous dysplasia expert right now LOL after being sent around on a goose chase for two years to eliminate the possibility of FD. There are certain blood work indicators that should help your maxfac doc pin it down. My 3 biopsy results all pointed to the textbook image of FD under a microscope BUT the "active" CT picture was missing. If you have FD, that would mean that after every biopsy, debridement the bone in your biopsy/debridement site grows back and expands beyond the norm. That is why I was suspected to having FD....everyone time a bony mass/lump was removed, i grew back with a vengeance. But then again, we all know that sequestrum can do the same thing, just kepe on growing back as the body fights and dumps all the garbage from the affected area into a "sack"....is your bone ALP raised? Parathyroid hormone? Any other hormonal deviations from the norm?

Take care

Reply
CJC, Community Member
7/31/09 10:04pm

I too suffer from chronic osteomyelitis of my maxilla.  It has been eight years for me. I have had many surgeries, picc lines, and done hyperbaric.

 

The only people I know that get well from this are the ones whose doctors are VERY aggressive and do multiple treatment therapies at the same time with surgery and hyperbaric. 

 

It is a very hard disease to treat.  Years of antibiotics are needed.

Reply
jane fay, Community Member
10/ 5/09 4:40pm

i cant get  a doctor to listen to me i know that  i have osteo in my jaw bone and im getting the run around from all of them.

Reply
OreoDancer, Community Member
10/18/09 4:00pm

Jane, 

 

More information? Where are you? Why do you think you have this? I am a long timer, so fire away at me with questions. I am not a doctor, but a patient and I have been sick for years on and off. New flare up very recently and feel like I just want to cut my face off!

 

Reply
jen;D, Community Member
8/11/09 10:42pm

I was diagnosed with CHRONIC DIFFUSE SCLEROSING OSTEOMYLITIS OF THE MANDIBLE at some point last year... I have had a PICC 3 times in a year and a half and now we don't know where to turn.  I have been blessed with a handful of great doctors but none of their expertice is in this field.  My infectious disease doctor is willing to try anything at this point because she agrees that a PICC every six months is definatly not the answer I had one doctor who was an oral surgeon and at first he seemed to be on board with my recovery however... we had some personality issues he stated to my other doctors that I was non compliant...(WTF??) I think that he didn't like how involved I was and how aggresive I was. If I'm told by someone that they are going to do something I expect it to be done...if we work together we'll go places ya know?  So anyway he doesn't like me and now I'm trying to find a new doctor and I'm soooo frustrated!!  I live on Long Island in Suffolk County so if anyone has any suggestions I would greatly appreciate it..

P.S.  Can someone also post their symptoms...(just curious) 

Thanks Guys!!

Reply
LisaH, Community Member
8/13/09 12:00am

 

Hi Jen,

 

I was diagnosed after a tooth extraction which my dentist thought intitially was the problem.

We think I may have developed Osteo of the Jaw (left mandible) after periodontal work about a year prior to all of this on the same tooth for another rare condition caused resorbtion. Hard to pinpoint excatly but it's the same tooth and that's the only potential "risk factor" that shows up on my radar screen. Typical risk factors for Osteo include trauma, IV drug use, Bone enhancing supplements like Fosamax- none of which apply to me.

After my tooth extraction, instead of the pain subsiding, the pain became intolerable and off the charts. Had never experienced anything like this in my life.

Was placed on pain meds, oral antibiotics and referred immediately to an Infectious Disease doc who did nuclear scans and an MRI. The MRI was the defining moment of diagnosis.

After that I was sent to a larger renowned medical center (Stanford) had a biopsy with an ENT(Ear Nose and Throat specialist) to determine the type of bacteria that caused my Osteo. THEN I was referred to another Infectious Disease doc at Stanford who had more experience with handling Osteomyelitis and started me on an IV which I stayed on for five months with a PICC line. Since then I've been on oral antibiotics. The jaw pain has improved dramatically to the point that I hardly think about it most days.

As I was then diagnosed with Chronic Fatigue on top of the Osteo, it's been quite a battle to regain my health.

I've been told however, that most people with Osteo recover much faster than I have.

 

Hope this helps you.

 

Lisa

Reply
jane fay, Community Member
10/ 5/09 4:05pm

please help want to get a good doctor for infection of jaw bone live in n.y.

Reply
Jeanine, Community Member
11/ 2/09 9:56am

Jane,

 

You can e-mail me at garacal@aol.com for doctors in NY who can help you.

 

Jeanine

Reply
Jeanine, Community Member
11/ 2/09 9:51am

Hi Jen- I too was diagnosed in 9/09 with Sclerosing Osteomyelites of Mandible. I have been suffering since 2004 after having a tooth pulled and a bridge put in.  Dentist and endodontist thought it was this tooth than that tooth... I've had many root canals and at this point I have no teeth on lower left side back.  It started with excruciating pain.  Then it becomes a constant throbbing pain.  It has gone in and out of remission through the years but now finally I have a true diagnosis.  It is so rare that there are not many cases on it.  Worried it could spread to skull.  I feel the same way you do as far as how some doctors look at you because you know so much about this disease.  Too bad, we need to be proactive in anyway we can, we are the ones suffering and we have the right to educate ourselves and have imput with treatment.  I have been all over for help.  I live in PA but am originally from SI NY.  I dont know if I can say where I am being treated.  If you want you can e-mail me at garacal@aol.com and I'd be happy to do into detail.  Best of luck to you...stay strong and smart.

 

Jeanine

Reply
Marie, Community Member
11/12/09 1:20pm

Hiya,

Looks like my pre-diagnosis is heading towards chronic sclerosing osteomyelitis. CT and bone scan results (glass opaqueness on CT) are once again supported by biopsy results that are almost identical to fibrous dysplasia but not FD. Chronic sclerosing osteomyelitis is the differential diagnosis of choice in terms of which of the hundred and one forms of osteomyelitis to compare FD with. Jeanine, you mention you are worried about it spreading to the skull....if my diagnosis is confirmed, my almost 4 years of living hell with head pains, a lump growing on my temporal bone (removed twice and slowly creeping back) is chronic SO due to a faulty upper first molar root canal and the lesion in my lower jaw (spreading from my incisor to the back) is due to wisdom extraction and then a dodgy root canal and extraction of my second molar. I have been in limbo now for two years, with my surgeon thinking its FD so no treatment was ever begun until we could truly confirm everything (so few cases in this small country that getting something on the "rare" side confirmed is close to impossible). Now we are waiting for the lab to confirm the origin of 6 delicious sounding bacteria found in the bone and tissue samples. I am a walking dental and maxfac surgery "F" up. I never had such health issues or any problems with my teeth until my wisdoms were extracted while i had a super duper load of EBV 4 years ago. This triggered the whole thing and my surgeon seems to be quite shocked by it all and still would rather point his fingers at it all being a physical endocrinological fault like FD than the fault of poor hygiene in hospitals here and also the fault of doctors who never listened years ago when I came knocking on the door. I firmly believe and will believe to the day I die that my case never had to become chronic had someone taken me seriously 4 years ago when I arrived at emergency with extreme cranial pressure from the mass growing on my head. I was shooed away and told I have agorophobia and am simply suffering from a panic attack...mind you the neurologist didn't even bother to take a minute to touch and examine the mass on my head. Now, from what I read online in scientific articles, this seems to be a lifelong battle of being in and out of remission. I am seriously weighing the option to have that part of my jaw bone removed rather than to have to worry about it coming back for the rest of my life...it has come back with a vengeance perhaps 3 times over 4 years. Something obviously triggers osteomyelitis back to life, on and off...Not much I can do with my temporal bone lesion. Everything now has contributed to serious TMJ problems, so I now need to undergo athroscopy of both TMJs. Over the 4 years of constant digging around in the mandible, the stress and toxins have affected the condylar heads (degeneration...mind you I am "only" 32)of both TMJs, which is contributing to additional head and jaw pain, neurlogical pain (on top of the other neuro pain caused by the CSO) and temporalis muscle spasms which leave my head feeling like it is being compressed between two Sears trucks. I feel fortunate now to have a surgeon who actually takes my input and opinion to heart, unlike the previous one I had. The problem as you wrote Jeanine is that CSO is rare, not much experience with it and one surgeon told me to simlpy take pain killers and anti-depressents and that's all (nevermind the ball of sequestrum that had formed into a 2.5 cm thick mass of garbage in my lower jaw) while the surgeon I now have is surprisingly trying really hard to find a solution. He now sees I am in agony from my TMJs that can hardly move without causing pain and muscle spasms so he needs to provide me with some relief there in the meantime. Our mandible and temporal bone battle has been a long one and will continue to be  along one unfortunately before the diagnosis is confirmed, perhaps another 6 months (even for the surgeon....the laboratories have been a pain in the rear in terms of identifying the prob as it is so rare, thereby misdiagnosing it or simply making statements like "unidentifiable bone problem" where the marrow is always wonky, fibrous glass structure). Other than steroids, any other forms of treatment that you have tried for CSO?

Thanks very much for your taking the time to read my post. Take care everyone, stay strong and stay well.

Marie

Reply
OreoDancer, Community Member
11/18/09 2:14am

Jeanine,

 

I just read your post about your Osteomyelitis. I see you gave your e mail to Jen and I wanted to see if you wouldn't mind if I e mailed you as well. I have been suffering from this illness since 2002-2003. I have periods of remission and flare ups. Recent flare up has been very bad. Interested in what they are doing for you to fix the problem.

 

Susan

Reply
jane fay, Community Member
6/ 7/10 8:47pm

I also live in suffolk county and I have been trying to get diagnosed for 2 years I had a infection in upper jaw  that flares up and than subsides for years .I had cat scans nothing shows up.  Ihave been to every doctor on long island and they do not think its osto. i would like to know  what is the best way to diagnose  chonic osteomyelitis .  how did they diagnose you?  was it a oral surgeon? and what test did you take.

 

Reply
Marie, Community Member
6/ 9/10 3:06pm
Dear Jane-Fay, A PET scan doesn't lie. It is the most reliable source for detecting an existing infection. I spent 5 years trying to get a diagnosis and have just recently undergone decortication and debridement following a CT scan that basically confirmed the clinical picture. Biopsy results just came in today proving the sclerosing process plus necrosis. I am waiting for a new PET scan to either confirm or rule out the other lesion I have on my temporal bone and to make sure the tugging and pulling I have had for teh past half year in the right mandible (my left one is affected by CSO) is not due to the spread of CSO, plus the oral surgeon needs to clearly define the limits of the CSO in order to excise the area precisely. And a PET scan is the most reliable for this. Pretty pricey, more expensive than an MRI out here for my health insurance provider. But heck...if doctors let the infection get this far, let the damn system pay for it. I am basically waiting for excision now, probably a third-half of the left mandible will need to be removed, then replaced by a titanium prothesis until the ends heal and prove the infection is gone, a 6 month waiting process before a bone graft is taken from the thigh. Horrific, but other members of the board have undergone this radical choice of treatment and have managed to rid themselves of osteo for good. My nerve has been dead for 2.5 years already, and occasionaly reminds me of its existence by shooting a burning, typical trigeminal neuralgia, however secondary. If you truly feel like something is "living" in you, then keep on fighting and do whatever you can to get proper testing done. Osteo won't just show up in your blood work...mine got the better of me "finally" this spring during a flare-up prior to debridement and my WBC shot up, but that's the problem with chronic osteo - it's up and down and all around and hard to detect. So don't give up. I fought with doctors for 5 years and often felt like giving up and taking their advice and going to a shrink, but once a flare-p came, I thought to heck with doctors....I am not nuts, something is definitely wrong with my jaw and temporal bone. You know your body best. Regards, Marie Reply
Smiley, Community Member
11/ 3/10 3:12pm

Jane fay also the CAVAT sonogram is the gold standard for finding osteomyelitis/cavitations.  I recommend you see Dr. Shankland in Westerville, OH. He is the best.

Reply
G2, Community Member
8/23/09 8:51pm

Hi there.  I can understand all your feelings.  Its a strange disease, no one can see it, and it ranges in intensity, sometimes disappearing for months, until something sets it off again.  I've had problems since a bad root canal almost 20 years ago.  It was diagnosed until it flared up into a giant pocket and almost blocked my breathing.  The doctor did a four hour surgery and removed many sequesters.  

Reply
OreoDancer, Community Member
10/18/09 4:06pm

Just read this note here and wondering how you are doing now and where the sequesters were, etc. Are you better?

Reply
G2, Community Member
8/23/09 9:04pm

Hi there.  You have my empathy and thoughts and wishes for better health.  I too have had this disease.  I got it in 1986 from a bad root canal.  Despite my chronic pain and complaints it wasn't diagnosed until 1989 when it flared up and almost blocked my breathing.  I had surgery to remove the sequesters, and it was ok (tolerable) for a couple of years, flaring up on occasion, I didn't understand too much about it until my second flare up.  Another surgery, and I thought I was rid of it.  I wish.  I've had chronic ear and eye pain, along with occasional pain in the area of my teeth.  Whenever I take antibiotics, I feel great.  I have night sweats, and shooting pain that radiates. I've mentioned it my doctors and they just gloss over it.  I recently had an implant, which suddenly rejected, a large pus pocket shot off the implant area and toward my throat.  I was out of town, took clindamycin by the time I was home it was better.  What and how do I focus my doctor on this?  I'd love some tips.  I live in the Palm Beach area if anyone has any ideas of where to go it would be appreciated. 

Thanks.

Reply
LisaH, Community Member
8/25/09 7:43pm

Hi G2,

 

I wonder, after hearing your story, that I may have had this for a much longer period than previously diagnosed.

I have had sore throats and ear pain for many years along with strep. Interesting to talk to other people about their experiences. It's very helpful. Thanks for sharing.

My only recommendation for medical care is to get to a major medical center. They typically have better docs and see more cases. I was told that I would not be able to get a tooth implant once I had had Osteo since the bone was not stable enough and most ended up being rejected. Sorry to hear about your experience.

I wish you and everyone on this site better health.

 

Lisa

 

 

Reply
Marie, Community Member
9/ 5/09 8:37am

Dear Lisa,

Your story (your first post) brought goosebumps then tears to my eyes. I felt like I was reading my own story. I have been battling for 4-5 years and it all started with a severe case of mono and I unfortunately found out "too late" that I had mono. In the meantime, I started getting major dental issues, severe pain etc. So, some smarty pants doc decided to extract all of my impacted wisdom teeth out without giving thought to the chipmunk look I was  sporting being potentially caused by mono. I underwent surgery under general anaesthetics and I will never forget the anaesthesilogist (sp) who was completely against using general anaes as he felt there was an underlying unaddressed problem. Nevertheless, the surgery went through and i Have never been the same since. 6 months later i developed a liver infection and that is how i finally found out I have severe EBV. Doctors brushed me off and I was left to lick my own wounds and get myself out of the hole. My jaw pain (lower left mandible) never ceased (other post-wisdom extraction sites have not caused any problems) and so I ended up at the ENT with unbearable sinus, eye and nasak pain on the left side of my face. They referred me further to a maxfac specialist and thus my 2 year journey of trying to get a proper diagnosis began. My second molar was extracted thinking it might be the cause of the pain only to find the pain escalated after. My maxfac started with ruling things out. My TMJ has suffered a blow from everything as well so that was step no. 1 - make sure the excruciating throb is not caused by TMJ inflammation. Nope....step 2 was a biopsy from the second molar extraction site which was too small to determine anything specific so a second one was done. Brilliant-results pointed to Pagets (I am way too young for that) so I spent months running around various/endocrine docs who always pointed to their heads and thought I was loco. In the meantime, a 1.5 cm tumour or garbage grew in the biopsy/extraction site causing my maxfac surgeon a little alarm and thus biopsy no. 3 took place. The results showed, once again, typical structure of paget's or fibrous dysplasia (mind you the structure is the same for certain types of osteomyelitis!! There are so many types of osteom). So I spent the last half year doing the same round around endo-bone doctors only to have all bone diseases ruled out. My nuclear scan showed sctivity in the mandible so that supports "something" is going on and that it is NOT in my head. I have been feeling suicidal from it over the past few months. I can't imagine living with this pain much longer. After 24 hyperbaric oxygen therapy sessions of 2hrs each, nothing has changed and there are days when the pain is convincing me it is getting worse. The working diagnosis at the moment is non-bacterial osteomyelitis which sounds like a load of bull to me. My incisor and first molar are sitting on a bomb. Thanks to the "lack" of my second molar, there is nothing sitting on top of the mess to stir that area up but below there my mandible is enlargened under the other two and I am suspecting it is putting tremendous pressure on my alveolar nerve/trigeminal nerve, causing eye, nose and sinus pain on top of the most brutal pain I have ever felt in my life (I have had a broken arm with a nerve pinched between the two pieces...but that was nothing compared to this!). I am at wits end because of the other symptoms i have which I believe are the result of poorly cured EBV, leading me to believe that I have also developed chronic fatigue syndrome. I do not wish to pursue help in this area as out here in this part of the world, docs will simply stuff you with anti-depressants and tell you to try a glass of wine to help it go down and that the pain is afterall "just all in your head." My maxfac doc is a lazy guy who seems to be praying and depending far to much on the effects of hyperbaric oxygen treatment. I am sceptical of the "non-bacterial" side of this whole thing. It doesn't make any sense to me. I will be continuing with 5 more HBOT sessions next week but once again, I am sceptical. It has not helped a bit. It has messed my sleep up and I have been "cleansing" in the wrong places. I forgot to mention that my alveolar nerve is "dead" in the chin area so half of my lips are dead and  half of my chin, leaving me feeling like a total moron when I try to speak. I am depressed and a mess from the whole thing. My life graduall fell apart over the years. My ex ran away with another woman, my motivation is gone, thus work is suffering and everything else with it.

I am glad to have just discovered this place today. I do not wish ostemyelitis on anyone but I think that some maxfac surgeons need to get a taste of it in order to be able to treat it better. The pain is debilitating, especially since pain killers DO NOT work. I have tried various things and nothing helps reduce the pain. I tried urging the maxfac doc for a debridement but he said there is no clear picture on the x-ray and CT so there is nothing to debride!! I am sooooo frustrated. :(( I have lost faith in the medical world.

Take care everyone...my heart goes out to all of you suffering from this. This is living hell. 

Reply
Marie, Community Member
9/ 5/09 9:45am

Hello all again,

I have to correct what I wrote (sorry about the typos as well). My first molar was extracted not my second. The "tumour" of literally garbage that grew was as G2 wrote, sequestrum that basically exploded into a balloon of granules, uric acid and other junk the jaw was trying to get rid of. I was also a victim of an allergic reaction to poor surgical material applied to stop bleeding during the second biopsy which is probably was helped prompt the sudden formation of the ball of garbage. I was sick every month, literally physically ill with what seemed like spells of septic shock or adrenal crisis problems but no doctor could figure it out. It always startled with rattling pain in the jaw while the sequestrum was forming. Anyone else suffer from spells of physical illness which seems to be caused by occasional over toxicity from whatever it is going on in the mandible?

I am just praying that some relief come my way with the next 5 hyperbaric oxygen therapy sessions. Has anyone else expereinced a sensation of their pain actually worsening with more and more HBOT? As mentioned above, I have had 24, 5 weeks worth and am going on to week six after almost quitting and mentally collapsing from the pain this past week after my session on Wednesday. I only thought of wanting to die when i got out of the Russian submarine. I know that the pressure while being "submerged" can cause the pain to increase but only temporarily while in the chamber but I was coming home all week and as I write, with a level of pain I have never felt. I do not want to have to get used to a new level of pain. I think we all know what I mean....this whole thing started with a poke, a throb here and then, gradually escalating and pushing your pain tolerance higher and higher in order to actually be able to survive and live your life. With every step higher on the pain scale (I am defintely long past that no. 10 on the scale of 1-10 LOL) I feel like this is it, I can't go on, antidepressants, Neurofen, painkillers nothing works so what next?? I guess that I figure that if HBOT is making the pain worse, then that should also be a sign for the maxfac quack to figure out what the heck is going on. I am tired of being a guinea pig without a real diagnosis. I even had a lump grow on my temporal bone at the same time 4 years ago so not only did I have a mass of garbage in my mandible but also on my head. It was removed at the same time as my second mandible biopsy showing identicle bone sample results. My question is how in the world did I get osteomyelitis on my head?? Could that have been from a failed root canal to my upper first molar which was leaking through an overstuffed root?? I had the root resected so the tooth is still there. But this all makes you wonder whether root canals really are a wise option.....I have lost faith in root canals. The first lower molar that was the suspected cause of my pain after wisdom tooth extraction was a flop from the beginning so when it was extracted I thought the whole problem would go away only leading to more problems. I have become an advocate of anti-root canals. They create toxic bombs in our body. Just nothing makes sense and if the lump on my head ( i will never find out as stomotologists never say anything bad about their colleagues) was caused by a failed root canal and the whole osteomye business in my lower jaw ditto, then wow....where are we heading in a time with "advanced medical technology?" There are days when I actually get very angry and feel like a victim of failed medical practice....the failure to identify mono, then to perform surgery on someone despite increased staph and strep findings under general anaesthetics (while also having undetected mono)....why didn't somebody stop the surgeon??? He should have known that wisdom tooth extraction under such circumstances would lead to a mess sooner or later....but hey...I was "young" back then and the "young" can fight anything off as most quacks believe. Sure, the young without mono. Then I was a victim at my new maxfac surgeon who used an agent I ended reacting to. Then I am a victim of lazy doctors who couldn't care less about the health of just another ordinary patient who looks like she has lost her mind and thus they shoo you away like you are some sort of lunatic for suggesting you have "attacks or spells" of toxicity from your rotting mandible. That was all while I was classified as a "Paget's/Fibrous Dysplasia" case. I always felt like my mandible was rotting, a toxic dump, but a maxfac specialist does not want to hear that a patient just might be right about his/her case. So two years later, the very thing I asked about the first day I met him "Could the whole thing be osteomyelitis" and was told "out of the question," has been brought up again as if the maxfac quack has suddenly had an awakening. It is just a preliminary diagnosis, but I am beginning to believe that it will be THE diagnosis but I am not convinced about the "non-bacterial" bit.

Anyway....I apologise for my ramblings. I guess one is trying to sort things out and any opinions, comments, suggestions are welcome. Reading all of your posts has been an enlightening experience. Too bad doctors don't read posts written by patients to actually get an idea of what we are going through. 

Take care all 

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Marie, Community Member
9/ 5/09 10:02am

Gez...sorry I am on a role with questions....I kept reading through the posts over and over and it is simply scary, like reading a mirror of yourself. My bloodwork shows nothing but increased bone ALP (but fibrous dysplasia was ruled out), and I actually read somewhere that EBV can increase not just your liver ALP but your bone ALP so who knows? My cortisol levels are out of whack but apparantly due to "stress." I usually have elevated erythrocyte count and increased PTT which complicates surgeries as I do not clot at all. My ability to clot has gone down the drain since mono. The irony is I used to have such thick blood when the whole thing started that I was given blood thinners but as I was never monitored, I tucked them away and didn't use them out of fear, so it seems my blood sorted itself out by going to the other extreme on its own. All of my blood work is generally within norms which does not help in detecting the problem and it has always given doctors a reason to send me to the shrink. I have always had a "strong" system though, until EBV blew in. I have no infectious diseases, had all sorts of tests run. Only had liver problems with EBV. Plus the bizarre spells. What shows up on your blood tests? Anything? 

Jen;D...you mention having problems with your maxfac specialist. Ditto. I get aggressive as well when nothing is happening as planned. I have exchanged some very harsh emails in the past week with him and I don't know what he plans to do. He puts a plan together and then totally forgets about it and just gives me the impression that he has too much on his plate to keep his patients organised. Then I get accused of having an "attitude"....sure...who wouldn't have a bad attitude and be aggressive when their health is so buggered up that life has become a painful thing to endure rather than a blessing and a pleasure. I can't belive how much i have ended up hating life thanks to all of this? Simply getting up and knowing that brutal pain awaits again has made living each day feel like a chore. The pain keeps you awake until you can no longer keep you eyelids open...you get a couple hours of relief while off in lala land and then you get whacked with it the minute your eyes blink wide open in the morning.  

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Marie, Community Member
9/ 6/09 7:55am

Hiya,

My maxfac surgeon out here in Central Europe goes to Jacksonville Florida. Some super duper clinic there he says....I don't know how far that would be for you, I apologise for my geographical ignorance, have been living for too long out here away from home (North America).

Take care

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Marie, Community Member
9/ 6/09 7:56am

The above comment was meant for G2 (or anyone else in the area)...I wish this website had an edit button! I get carried away and my typos are an embarrassment.

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LisaH, Community Member
10/ 5/09 8:31pm

Hi Marie,

 

I've been off the site for a bit so my apology for such a delayed response.

 

Boy , my heart goes out you!!

 

My opinion is to get to a large renowned medical center that sees cases of Osteomyelitis and know how to treat it.

If you are continuing to experience this level of pain and swelling, Osteo sure seems like a very real possibility.  AND if something unusual is showing up on a CT scan ( I had MRI'sand nuclear scans) that needs to be explored further.  Not that I would wish this on anyone , but it sure makes sense that you could be needlessly suffering from a neglected case of Osteo.

Since Osteomyelitis is an infection that is caused by bacteria, there is nothing else that will cure it or control it besides antibiotics!! Depending on which bug is causing your Osteo, that will determine which antibiotic you'll need to go on. I've been on antibiotics for a year and have been told I may be on them for the rest of my life.

 I'm not a doctor but I've researched this thing and asked a lot of questions of my doctors along the way. It's been a process.

Osteomyelitis seems to be such an insidious ilness from everyone that I've talked to, agressive treatment is the only way to at least prevent additional tooth and bone loss.

I've been fortunate that I've only lost one tooth and had one surgery for the biopsy. I recently found out that I suffered nerve damage though the surgery. After second and third opinions, I've been told it could take up to two years if it comes back. My sense of taste and smell are very messed up. A minimal issue though compared with what you are dealing with.

 

An infectious disease doc may be your next best resource.

I wish you the very best...search out good care and be proactive and persistent!

Good luck. I have little knowledge about medical care in Central Europe but if you are under an EU state covered plan, my understanding is that it could take awhile to see another specialist. 

Just keep being persistent. You will get help even if it means going someplace else to find the right doctors who will listen and take care of you.

Best, Lisa

 

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CJC, Community Member
10/ 5/09 10:30pm

If any of you had troubles after a root canal.  Watch this video.  This substance is known to damage the tissue around a tooth.

 

http://www.nbcphiladelphia.com/news/health/Investigaton__Is_Your_Root_Canal_Treatment_Safe__Philadelphia.html

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OreoDancer, Community Member
10/18/09 4:09pm

Hey there CJC!

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alle, Community Member
10/28/09 12:24am

This really goes out to everyone on here.  I've been reading all of your accounts since I was diagnosed in late July and am now at the worst of my ordeal. I really need all the help and support I can find, so here goes with my story!  At the beginning of July I started having pain in my lower left wisdom tooth.  I am 30 years old and had never had them removed, so I decided it was time.  I went to an oral surgeon and had all 4 taken out.  About three days later I got dry socket and the worst pain of my life or so I thought then.  My incompetent I now know surgeon packed it for a month and even gave me all the stuff to pack it on my own at home so I wouldn't be in his office crying everyday.  Finally a month later he decides to curette out the sockets.  This helps some for about a week but the horrible pain in my lower jaw bone persists.  Finally he says he thinks I might have Osteomyelitis and that I need another surgery to remove the dead bone.  He does this and the healing has been slow and the pain constant ever since.  I took it upon myself after reading all of your accounts to go see an infectious disease doc and have been on the picc line antibioics for 9 weeks now.  Also I have done 40 dives in the hyperbaric chamber.  So you would think I was getting better right?  Well, actually I do feel a lot better...but the pressure and jaw pain is still there and the nuclear scans and CT still show infection on the left mandible.  I decided about 2 weeks ago to go see a new oral surgeon I've heard wonderful things about and he tells me things I still can't believe.  He says my jaw is so thin and full of holes that it could break at any time.  He sends me to a head and neck micro vascular surgeon who I saw today and he confirms all of this.  He tells me I must have surgery and have most likely a while section of the left jaw removed, a metal plate put in and then 10 days after that if all is going well, I will have a bone graft from my leg put in my jaw to replace the plate.  This means a huge scar on my neck and two on my face from the screw holes.  Also because the whole section of bone will probably be removed so will the nerve, and I will have permanant numbness in the left chin and lip.  I already have extreme numbness in my whole bottom chin and lip but it is supposedly not permanant and I have actually been getting some sensation back in it recently.  I can't believe in just a few months my whole life has been destroyed.  The surgery has been scheduled for november 4th which is a week away.  PLEASE PLEASE PLEASE have any of you heard of such drastic treatment for this and do you think this is the right thing to do?  I am really scared.

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Marie, Community Member
10/31/09 1:32pm

Hiya Alle,

My heart goes out to you as well. Hang in there.

I have also just completed 40 dives, zero relief and celebrated my 4 years of hell anniversary. My maxfac surgeon has offered the same drastic operation to me....we have been weighing it for 2 years now and delaying it. Such a drastic operation can be done whenever you decide to go for it, but you can never turn back time and undo what has been cut out and implanted. You are at the beginning of the battle, give hyperbaric therapy some time, they say the that in certain individuals the "progress" from HBOT can take months, it won't happen overnight. Healing is a long progress and some foks need a 100 dives. My insurance covers 65 free per year then tough luck. I will go for ten more prior to taking off for xmas holidays, just as a boost. But having been battling for 4 years, I am beginning to feel like surgery is the only way back to a normal life, so I may be a bad example for you. I have tried everything. I just had my 4th biopsy done 2 weeks ago and my chin is even deader than the dead it was before. I don't even know if I really do have osteomyelitis. Al I know is that the pain is 24/7 topped oof by crippling numbness (I need my mouth for my work so I am having to reconsider new career options....depressing). The operation is a tricky one, a common one though. However, there are new methods now....you just need to find the right maxfac specialist for it. My maxfac surgeon explained that he would remove the half while keeping the nreve alive, it can be reinserted into the bone graft from your thigh. Some sort of new technique but it makes the whole operation more palatable for me. Mind you, I also have a bone growth on my temporal bone. Biosy samples from my mandible and temporal are identical....so God only knows what is living inside of me. My bone specialist doesn't believe it's fibrous dysplasia, but if it is fib dys, the surgical procedure will be the same. I may sound sadistic with what I am about to write....give it time before you accept surgery. It sounds a bit bizarre to me in my non-expert opinion to be jumping onto the band wagon so shortly after the issue was triggered. You have to give it everything you have got before you go for the irreversable. But then again, my advice sucks....I have had such a battle to even find a maxfac surgeon who would help that ove rthe four years i have messed both TMJs up to top things off. MY trigeminal nerve is buggered thanks to the primary problem in the mandible which is causing nerve pressure. So, if you are in good hands, relax, give it time, you are being monitored and hopefully you won't get into the chronic state as I and others are in. If I had received the help you are getting right away, right at the beginning in the acute stage, I wouldn't have trigeminal neuralgia or TMJ problems to complicate things.

My writing is frazzled....my concentration sucks these days from the pain. So I apologise, but I hope you find some peace in reading the stories of others on this board, knowing you are not alone and that help does exist. It is all about finding teh right doctor and it sounds as though you have. Just be patient but not overly passive like I was. I got into problems with doctors because they thought I was a hypochondriac 4 years ago in the acute stage when EBV hit me as well. So I just curled up at home, waiting to die and didn't bother fighting doctors anymore. I couldn't take the mental abuse from them. I thought doctors were supposed to help, but they don't or they back out when something complicated lands on their doorsteps. I was complicated for them....a lump on my temporal bone, a liver infection, extreme EBV levels, a throbbing mandible, mumps, a walking mess and the internal med doctor slammed the door in my face which resulted in the fact that I lost all trust in doctors and medicine. I prolonged my own agony until the mandible and trigeminal nerve pain became so severe I simply had to go somewhere and ended up at the ENT who then forwarded me to the maxfac specialist I am seeing and trying to sort the problem out with.

I better stop....I am rambling. Frustrated and in agony from the pain that never ends and yet no 100% diagnosis in sight it seems. So feel blessed you know what you are up against. And fight it with all of your power until there really are absolutely no signs of improvement, and only worsening. Then you know it's time for surgery.

Take care,

Let us know what you decide. I will get back in touch with folks once I get some results back from my biopsy and whether after 4 years of utter hell, my surgeon will once agin offer the drastic procedure and bring my misery to an end because I am at the point that I will definitely accept it now.

 

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alle, Community Member
11/ 2/09 11:32am

Thanks for responding Marie...

I hear you loud and clear about the waiting till there is no choice and totally agree.  The problem is that this new doctor seems to think that time is now.  He's saying that if I don't act fast it's going to continue to spread until I just end up losing even more of the jaw.  He did tell me about the nerve graft that may give me some hope of not losing all sensation, which like you said makes it seem a little less horrible.  I'm scared and I don't know if I'm doing the right thing, but I go to the hospital wed. and I'm just praying I've made the right decision. The doctor doing this is a head and neck vascular surgeon and also a plastic surgeon, so he seems like he is qualified at least.  I'm only 30 years old and it scares me to think about dealing with this for the rest of my life.  Nobody understands what this is like except all of you on here.  It's hell.  The pain, treatments, the doctors that tell you nothing is wrong when you know something is.  I will let you all know how the surgery goes...

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LisaH, Community Member
11/ 3/09 12:34am

Hi Allie,

 

We're all part of this terrible club that none of us wanted to join and can't get out of....

It's really awful at times, but I feel there is hope.  I believe there's always hope.

This illness has really taught me unbeliveable perserverance and determination.

 

I have to say I agree with Marie's thoughts on your surgery. If you've only been on a picc line for a few weeks, you're just at the early stages of healing.

I would want to see your MRI's and bone scans to ensure that your docs are not simply opting for your jaw surgery because business might be slow.  If your jaw bone is necrotic and there is no hope of saving it, maybe surgery is the answer. But I'd want to be absolutely unequivocally certain since it will have long lasting effects.

 

I'd get a second opinion. I'm a big second opinion person. It's been helpful along the way for me to talk with other docs and see what they had to say. AND I've listened to my gut instincts as well. We may not be doctors and may not understand this illness, but we have instincts for a reason. If you feel truly hesistent to get surgery, delay it until you KNOW it's the right thing for you to do and you trust what the docs are telling you.

I had to fire one of my docs along the way since he was telling me that I was "too proactive". Is there such a thing when it's your body and you're in severe pain? I don't think so....

It's up to us to be our own healthcare advocates.

 

I've been dealing with Osteomyelitis for the last year preceeded by a whopping case of Mono three years ago and progressive dental issues which lead me here to Osteomyelitis.

My Osteo clearly showed up on an MRI and also on the nuclear scans- even though the radiologist reading the nuclear scans told me there was no infection. The scans showed my entire left mandible was blackened. I knew the radiologist was wrong and God help me it almost came out of my mouth as he was telling me to my face that there was no infection. I had to restrain myself from calling the hospital later to tell them after I finally received the diagnosis.

Five months on a PICC line and a year later and I still have jaw pain. I've been on antibiotics for the full year. Oral prior to the Picc and now after.

I did 21 sessions of hyperbaric and felt an occasional glimmer of energy. Didn't last long so I'm not sure honestly if the HBOT worked for me although my ENT/ Facial Reconstructive surgeon highly recommended it as a standard protocol for severe cases of Osteo like mine.

 

Get yourself support and second opinions Allie. You're on antibiotics which is good...you're on the (very long) road with the rest of us, but at least you're on the road.

I wish you (and everyone else on this site)  the answers you need!

Lisa

 

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Marie, Community Member
11/ 3/09 6:27am

Hello again....this will be a long post....perhaps people can provide feedback, their own experience with the walls I am hitting, whether my assumptions of the underlying problem are correct or not...I am just a patient, no medical background but after four years of hell, I have probably read more scientific articles online than any doctor.

Lisa....you mention your nuclear scan showed "darkness"....I am not sure I understand. Nuclear scans show either cold or hot sports. Cold spots (blue/green) for necrosis because the bone is dead and does not absorb the injected content and hot spots (orange/red) for infection and osteomyelitis for increased uptake. I had a nuclear bone scan done 4 years ago, half a year after my wisdoms were removed during EBV (our case is so similar it is scary.....my EBV titers hit 900 in the active stage and my GP simply said I need antidepressants) and my jaw lit up like a Christmas tree on both sides. Now....3 years later, the scan was repeated and this time my jaw only lit up in the left mandibular area, the side that is causing living hell, and it was done at the same nuclear scan workplace so the report stated that the uptake was significantly higher than 3 years ago. So is the darn pain!!! At the moment, this is the only proof I am able to smack back at the quacks who are claiming it is all in my head (I will get to the gruesome details further on....yesterday was one heck of a day at the maxfac clinic which denied everything). I was not born yesterday and after four years of living hell, I know how to read oral x-rays and CT scans....My CT scan, the 3-D mode one shows the whole problem loud and clear. All the maxfac quacks deny it. My left mandible is literally eaten up from past my former wisdom tooth towards the TMJ all the way down to my incisor. There are glimmers of hopeful bone here and there but in comparison to the "healthy" right side, even an inexperienced eye can see it. So why the heck are maxfac specialists denying it???? My latest biopsy has come back negative in terms of aerobic and anaerobic bacteria...only the common oral flora is multiplied, nothing alarming. I am still waiting for the "bone" part of the results to come in, so far there seems to be no osteoblastic hyperprocess going on like in previous biopsies but to me, that only confirms the obvious = bloody dead bone. I am beyond frustrated at the moment. I never thought I would have to literally fight doctors to regain my health back and my normal life back. As everyone here writes, we all know our bodies best, we are the best judges of when something is out of order and thanks to intense physical training all my life (I am going to be 32...plagued with this problem since 27) I know how to listen to my body. My body is telling me, even my cortisol levels, that something is very wrong. The pain is excruciating ever since the last biopsy 3 weeks ago. The pain used to stop at my first molar and has now moved on to include my incisor (perhaps I am referring to teeth in their incorrect names, out here in Europe they call them no. 1, 2 and 3 etc.....so my teeth now ache from no. 3, 3rd from the front tooth on the left). If it were just a matter of my nerve, then the ache would be precisely half of my mandible. But it is a creeping pain that expands and progresses with every messed up biopsy and my TMJ is officially becoming dysfunctional on that side with my right TMJ starting to rattle as it attempts to compensate for the left side.

Okay...now let me get back to yesterday and to the battleground with doctors out here. My maxfac surgeon is out of town so I decided to go back and see his colleague (saw him two months ago and he said it's sclerosing osteomyelitis, denied it yesterday), especially since my stitches had ripped the gum out from under my no.3 tooth. I had them removed and then came the great debate. He accused me of being a simulant/hypochondriac...he denied EVERYTHING. There was a witness to his childish arrogant behaviour, but it was simply a student who stood there in shock at what was exchanged between us...great learning experience. I was told I belong to the shrink ward, that I need to visit the pain clinic as well on a regular basis where they will provide me the appropriate meds (ahem....he was suggesting antidepressants) and with some sort of gimmick magnetic therapy. I said no way...I had visited the pain clinic two months ago when he sent me there initially and refused magnetic therapy as simply lying in an MRI intensifies the pain. The problem here is, this arrogant maxfac specialist is the very specialist who labelled me as "atypical facial pain" 4 years ago...long story. The health insurance system here provides free maxfac care and partially dental as well. These specialists run private clinics after hospital hours to make money...business. Well, 4 years ago I sought out his expert care privately, paid big money to be diagnosed with TMJ dysfunction and to get a night guard only to feel seriously ill one day and half blind from trigeminal nerve pain, severe salivary gland swelling and intense dental pain that led me to seek help at the faculty hospital during the day (I coul dnot wait to the evening hours he works at privately)...to my sheer shock and his horror, I bumped into him face-to-face at the hospital. It was his shift and he HAD to examine me. He was furious and yelled at me in front of the nurses and waiting patients, he yelled that he advised me never to visit this horrible hospital etc. and as it seems, out of revenge for sussing his services out for free, he labelled me with "atypical facial pain", gave me a prescription for Amintryptiline and told me to see my GP for suspected mono. Why the heck didn't he write "patient presented with suspected mono?????" It was the truth, it was NOT ATP. My facial pain was due to a severe case of mono that only he recognised but he failed to intervene in what ensued and what I believe till the day I die caused the entire problem. My GP failed me as well. He shooed me away and didn't bother to confirm mono. I ended up in +40 fevers for a couple of weeks, I actually do not know how i am survived all of this looking back now, without medical assistance. I had days where I couldn't bend my neck, felt like my brain was swelling, I thought I wouldn't see the light of day again and even left all of my bank and invoicing details for my family to recover what they could. Of course the dental pain intensified and since nobody bothered to confirm mono I went back to the maxfac clinic and was examined by somebody else who discovered I had all four wisdom teeth and all 4 were severely impacted and needed to come out. That the glandular swelling could be caused by them. Bollux looking back now, but it is too late to turn back time. My wisdoms were removed under general anaesthesia, initially the anaesthesiologist refused to put me sleep claiming my blood work was not in order and that strep and staph were dangerously elevated. He was the only one with his head screwed on right that day. But the surgeon came and said he didn't care and that the problem needed to be removed from my mouth and the rest would resolve on its own once the source of the problem was gone. I suffered from lung problems for half a year after, nobody helped, everyone wiped their hands clean and especially since I had the label of "atypical facial pain" sitting on top of my med. file. The wisdom tooth surgery was a big flop and mistake and the surgeon refused to admit it and took a ride along the preliminary diagnosis established by his arrogant colleague. Ever since, I have not been able to receive proper care at the faculty hospital, the only hospital in the city with a complete maxfac department. So my confrontation with the main culprit of my needless agony yesterday sent me into a rage. We were literally yelling at each other, no point in telling me to hold my tongue. I couldn't take it anymore from him, he failed my test....I had set out two months ago to prove my theory that he will never admit to his misdiagnosis and that his misdiagnosis will haunt me at the faculty hospital till I die. He accused me of being a hypochondriac, he refused to look at the CT scan which would have shown him exactly where the problem is, and he even dared to claim that my scintigraphy is meaningless. I argued back that a nuclear scan doesn't lie and that I did not implant a lightbulb in there for that particular day. He was furious and started yelling that there is absolutely nothing wrong with my mandible, never was and never will be. I fought back with a vengeance and pulled out all of the proof I could. I reiterated the scinti results, he didn't care, I could not get him to look at the CT even after offering the CD several times, he didn't give a brown one that the neurologist has come to the conclusion that the primary problem is a local one, my brain is not the source, and that she believed my troubles with the upper branch of the trigeminal nerve were due to TMJ dysfunction (just a reminder, I suffer from what manifests itself as sinusitus or an allergy, runny left half of my nose, left eye pain and blurred vision and extreme upper left maxilla tenderness next to the TMJ and under the eye, yet no findings at the ENT) and she openly expressed her sympathy with me that she feels I am a victim of poor maxfac practice. Then he went on to accuse me of being emotionally stressed out, that the stress is causing the facial pain and thereby weakening my immune system. Funny - I pulled out the immunological tests he wanted me to get done from last month confirming that my immune system is in perfect health, that EBV is dormant and lyme disease is within norms. Other than my battle with EBV, I have always had a strong system which seems to baffle doctors (had another crisis in my life when I was at death's doorstep but my body fought back with a vengeance and blood work always came back showing "life"). At this point he wanted to throw me out along with the door...I adrted questions, demanding explanations for why I can't bite or use half of my mouth due to pain? Why my no.3, 4 and 5 teeth feel like they fall through when I bite on them? Why my TMJ pointlessly has to take the toll for it? Why the radiologist specialist spotted joint capsular destruction of my left TMJ two years ago and yet he as a maxfac specialist and TMJ specialist fails to recognise that??? Then I asked about my left chin, lip and partial cheek numbness, why after two years of worsening numbness nobody is bothering to help and that he still has the nerve to accuse me of being a hypochondriac? I told him that without looking at my CT and OPG full dental x-ray, he has no right to give a patient a diagnosis. I pulled out all 3 previous biopsy results which all confirmed the same fibrous destroyed bony structure and he said it is all meaningless to him, that it confirms nothing. I reminded him of the fact that the same bone growth that appeared in my mandible was identical to the bone growth I had developed on my frontal bone (reminder - I had a bone mass on my frontal bone removed twice...it was quiet for half a year until I did 40 HBOT dives, now it is well defined again and nobody wants to admit it - I give up). After the frontal bone mass was biopsied the first time, sequestrum developed, just as in my mandible (2.5 cm ball of sequestrum sitting happily in the site of my former second molar). Thus, biopsies had to be repeated. That bit of info totally peeved him and of course, miffed him as he didn't know what to tell me, so all he said was that if the bone doctor said there is nothing wrong, then there is nothing wrong. Sure, the bone doctor has been doing his best to help and has ruled out fibrous dysplasia, but he has not ruled other problems out and stands firmly on his opinion that it is all some form of osteomyelitis due to failed dental work and surgery (reminder - my upper left molar was root canalled, a failed procedure as the quack endo had overstuffed on root and penetrated into my sinus...I was living with several millimetres of toxic root filling garbage sitting in my sinus causing headaches, chronic sinus inflammation for 1 1/2 years until another dentist had the courage to remove it endoscopically and resected the roots after). No maxfac specialist wants to hear this though. Soooooo, I am back to square one, a wandering lunatic without any diagnosis other than ATP as a cover-up for a mega F-up. I can only hope that my maxfac specialist returns from his holiday in a good mood and with the guts to work against his superior. The guy I confronted yesterday is his rival, however he is his superior, so I unfortunately believe he has the last word in things. Should this theory prove true, sooner or later my jaw pain will lead me to an adrenal collapse. I seem to have developed pseudo-cushings from the physical and mental stress, so this is giving maxfac specialists another reason to send me to the shrink. It is a vicious circle at the moment. I am afraid the hypercortisol cycle is not going to come to an end until I get relief from my mandible, TMJ issue and frontal bone issue. It is my body's way of dealing with the chronic infection.

I have to say, there are more days these days when I feel like giving up the fight. The consistent pain from mandibular bone inflammation causing constant trigeminal neuralgia is unbearable. You read about cases of TN and how simply trigger points launch the pain, pain that last "only several hours" at the most. But this is 24/7 trig nerve pain thanks to compression. Plus the chin numbness....I feel like ripping my chin off sometimes. Then when my TMJ starts rattling like the hinges on a door that haven't seen an oiling can for centuries, I can't even get pleasure from a bite to eat. My whole case is is beyond acceptable now. I have a label that I can't seem to break, only one maxfac surgeon who has dared bet against it so far, but once his superior persuades him otherwise, I am finito.

So Alle....please please please think it over. It really seems crazy to dive head first into a drastic operation after "only" suffering since the summer. The body needs time to heal. Your brain needs time to weigh whether or not the pain is subsiding. HBOT is supportive therapy, it helps your immune system start fighting back again and the result is not going to be overnight. It takes 6 weeks for a broken bone to build back enough strength to take a cast off, then months to fully repair it. You are only at the beginning of allowing your body to apply the benefits of HBOT to fighting back and building strength again. I also did 40 dives, the first ten were just like the head doctor had explain, brushing off the dust on a rusted old car. The next ten were revving up the motor and around 20 I actually felt the cleansing process but couldn't keep up with it so I was exhausted and felt quite ill from my kidneys and liver not keeping up. The next ten were the actual motor clearing up the smoke and getting moving. Thus after my initial urge to quit at around 25-30, I decided to keep on driving to 40 for a fair shot. However, I started having sinus problems from my trigeminal neuralgia and tachychardia (doctor denied HBOT being the cause....baloney). So I stopped out of fear. I am very petite and I felt that the process of diving -16 metres was starting to have a negative effect in other places. My ears were also not taking it well anymore and the lump on my frontal bone that had been "successfully" removed was coming back to life. But if I could continue for the sake of my jaw and sanity, knowing I had given it all before drastic surgery, I would be working my way to 65 dives (that's all my insurance covers). Then I would give it several months to either win the battle against the chronic infection, or the chronic infection would slowly but surely win. In combination with antibiotics, HBOT has been confirmed as highly effective....time is the essence though. I was not administered antibios as biopsies have not confirmed anything alarming in terms of bacteria other than staph. I personally know that staph is dangerous and a competent candidate to cause osteomyelitis but maxfac quacks in this part of the world simply wave their hands at it and laugh, claiming we all have it....sure we all have staph in our bodies but in our bones???  No comment. But I do know that whenever I was prescribed oral antibios for 2 weeks, I felt a euphoria, like I was "cured" and than I was smacked by a dead fish as their effect subsided. Please please please, give yourself a time limit. I usually give myself a 5-6-month break to allow my brain to assess things after any sort of invasive intervention, it allows me to mentally relax and assess things objectively, not in hysterics. After six months, I assess myself like a doctor and, from the above it is clear that I have always come to the conclusion that things are not up to par and thus continue to pursue help. Christmas holidays are coming up, set up appointments with your specialist and a second opinion for say January/February. You can always cancel and you can always turn-up in case of emergency. Just let your body do its stuff. Pamper yourself in other ways, eat well and give yourself a fair chance before you make a decision that will affect the rest of your life. I received the same option when I was 30 from my maxfac specialist and have delayed it by 2 years now. It has been hell, but I want to give it all my best shot but now it seems I am hitting a dead end and may not be offered this procedure again if my maxfac's opinion ends up being manipulated by his superior and by underlying health insurance factors. Unfortunately, there are alterior motives in the medical world these days, money makes the world go round and that includes doctors. It is sad and disgusting. Just stay strong, keep a positive outlook on things (i am a hypocrite....but my sense of humour has kept me sane throughout all of this) and you already know your options in the worst case scenario. But give your body a few more months to show whether it can fight and win a better case scenario for you.

Sorry for the long post everyone. Thank you for getting through it if you have. Opinions are welcome and highly appreciated. I know I am not a nutcase, I know my body and am open to opinions. I have tried antidepressants and various epyleptic neuro meds along the road to primary problem lies in their field of work.

Take care everyone. Thanks for this site and the support one can receive here. It is encouraging and inspirational.

Marie

Reply
LisaH, Community Member
11/13/09 12:14am

Hi Marie,

 

When I had my nuclear scans, they did two- one that showed darkened areas and another that showed an accumulation of white cells- supposedly they cluster if there is an infection.

The scans clearly show my head and jaw with a blackened left mandible- the site of my Osteo.

Because the white cells didn't cluster, the radiologist elected to tell me that I did not have an infection. Fortunately, my infectious disease spec ordered an MRI which clearly showed the abnormality and infection of Osteo in my left mandible. This was confirmed through a biopsy.

I'm relatively new at this though- it's been about 14 months, so this was been my first and only experience with nuclear scans.It was the MRi that finally diagnosed my infection.

 

I have to say , this has been brutal at times though. Still on oral antibiotics after 14 months and my jaw pain continues. Some days worse than others- but it's constant. Some days a dull ache, others more significant pain.

As I read others postings, I continue to wonder if something else is going on with me or if this is all consistent with Osteomyelitis.......I'm always searching for answers and to feel well.

 

I hope you can find the help you need in Central Europe Marie. It sounds very frustrating. Is there another hospital that you can go to? Another larger city nearby?

 

Lisa~

 

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OreoDancer, Community Member
11/18/09 9:19am

Lisa, As I have found out, those nuclear scans with the blood cells are useless. If your bone is comprised by infection and possibly dead tissue, the blood cells can't even get in there, so the white blood cell study and/or gallium scan are pretty useless. Unfortunately, some doctors with no imagination use those scans in an effort to deny someone has osteo. i am sorry to say that about doctors, but my experience has been horrendous!

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LisaH, Community Member
11/30/09 9:42pm

Hi Susan,

 

Great information! Of course it makes such great sense that the white cells couldn't get in there because of the infection and possibly necrotic (dead) bone.

 

I just had another MRI today since I've had increasing jaw pain....it seems to ebb and flow, but lately has been prety significant.

Since my entire ordeal began with Mono and severe EBV virus 3 years ago, and from what I've read from others postings,  it seems that man of us with Osteo suffer from a combination of bacteria and viruses.

So far I've only lost one tooth- but was told that I could never have an implant. My oral surgeon said that once you've had Osteo in the jaw bone, it will never be strong enough to support the bone grafts and an implant. Would love to hear from others who've had a different experience and info from their docs on this.

 

How are you doing now Susan? Any relief from your current flare up?

 

Lisa

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OreoDancer, Community Member
11/18/09 9:17am

Marie, Wow!! I have a friend who could have written some of the same stuff about doctors. I could too, but not as severe. I am so sorry you had to fight a doctor like that when you are so sick. It sucks!!!!

Reply
lisag, Community Member
1/ 4/12 6:13pm

hi

Reply
Marie, Community Member
11/ 3/09 11:53am

Dear alle,

I apologise for being "nosy" but I guess that the whole thing lacks sense. Osteomyelitis is a condition that takes years to penetrate into the bone and cause half a mandible to become infected. Acute osteomyelitis only affects the outer bony layers but not the deep ones, it needs more time for that. SO, I guess that is what kind of puzzles me and makes me wonder why your surgeon is urging you to undergo such a drastic surgery so soon. Have you even had a biopsy done yet? I have had 4 dry sockets of which two turned into a nightmare, both happen to be on the affected side. But x-ray of CT imaging doesn't usually provide a clear picture of osteomyelitis until well underway. Dumb question, but it is not clear from what you wrote...are you a female? You don't mention an other dental work done prior to wisdom tooth extraction. DO NOT, I REPEAT DO NOT undergo surgery until you have had a proper biopsy. There are all sorts of problems that can cause your mandible to look like one mega lesion or black spot. You have not even had a scintigraphy/nuclear scan yet have you? Insist on getting one. They don't lie. CT scans and x-rays can often cause false positives. Or, false negatives for that matter. I just can't believe that your mandible would look like Swiss cheese from a flopped wisdom extraction within a couple of months. Not physically possible. That is why I ask, have you had any otehr dental trauma on that side? Do you have any endocrinological problems? How about estrogen? That is why I asked whether you are a female. Most women have mandibular bone loss after children, even without children due to estrogen. Estrogen lesions....what is odd about them is they come and suddenly disappear again. Simply....osteomysletis or such fast bone destruction within a couple of months doesn't just happen. It was partially either there before, or your surgeon is a quack and has not asked you for all of the details and has not performed all of the right tests. You can even have a vascular problem....that would however cause necrosis. If you have been getting back some sensation to your chin after a couple months, then give your body time. The worst thing you could do now is jump back in with a knife. Only accept a knife if a biopsy is performed. My chin has been dead for two years, no sign of life and yet my surgeon insists he never even went near the nerve. So I assume it is bone inflammation causing compression. But I would give anything to get the least bit of feeling back in my chin. I can't remember eating and not having my food dribble down my chin. It is humiliating in public, I have learnt to deal with it, cover it up but it still causes anxiety when I eat in front of people I do not care to share my problems with. Just DON'T DO IT yet please. Everyone's jaw is thin....it is a two dimensional bone which is what makes it so complex and so frail and susceptible to injury, especially vascular. You deserve to give your body a chance by getting ALL of the appropriates tests done. You haven't from what you posted. Like Lisa wrote....you sometimes have to wonder if doctors aren't just in it for the business. Out here the system pays doctors so poorly they run private clinics in the evening where they take proper care of their patients and during the day they simply dick around at work and just perform surgeries that gain them the points they need in order to remain members of exclusive maxfac surgeon associations. Don't forget, provided your expert is a member of any mega association, he has to meet the requirements which is a list of specific operations and how many of each and how many points for each. Without this...adios.

Sorry, I have gone too far....but I can't help but feel even from my own experience how much money plays a role in medicine. It is appalling. Unless you collapse, have a heart attack, organ failure, brain stroke or accident, nobody seems to give two pickles about anything and brushes patients off like they have a contagious skin disease. You have to fight in this corrupt medical world these days. Sad but true indeed (no I have not lost my marbles....Eastern Europe is just about the most corrupt part of Europe and I dare say other than poor third world countries, perhaps the whole world). I know from what I read about the US and Canada (I am originally from Canada, just working out here) that money talks in the medical world as well.

Take care, fight for your rights and don't let yourself become a victim of malpractice and greed.

Marie

Reply
alle, Community Member
11/ 3/09 12:36pm

Hello all...let me clear some things up. I am a 30 year old woman and I'm from Dallas, TX. I have had all the tests you speak of and more.  The biopsy was done during the second debridement and was positive for osteomyelitis.  The nuclear scan was done about a month ago and both parts showed positive for osteo.  The CT also showed the osteo.  I have been on the picc line for 9 weeks straight now and did a month of oral antibiotics before that. I have also completed 45 hyperbaric dives and know all about that.  I know without a doubt that I have this, I just don't want to end up having it spread and take over my whole mandible.  The surgeon says that removing the necrotic bone and infection is the only way to stop it from spreading.  I don't know how it could have spread so fast, but I will be asking him that question!  Thank you all for you're advice and concern.  I actually have a doctors sppointment right now and will let you know what he has to say!

Reply
Marie, Community Member
11/ 4/09 2:55am

Dear Alle,

How are you doing? How did your appointment go?

I apologise for coming across as abrupt if I did. Things were not clear to me and I appreciate your clarification and my entire heart goes out to you. It seems truly unbelievable that it spread so quickly, it would make sense had you undergone any other botched up dental work on that side, or perhaps even received a nerve block for any minor dental work. I don't know if others have the same problem, but I noticed 4 years ago when the whole problem started that whenever I received a nerve block, just for root canal treatment or a filling on that side, it even took days to regain life. When I had my first biopsy done and recieved a stronger nerve block, my jaw bone (forget my chin, that never returned to life) regained sensation 10 days later. My surgeon was miffed but it should have been a sign to him that perhaps he was injecting into dead bone. But hey, I am not a doctor, I just use logic to come to some sort of conclusions to keep me sane.

I guess there are some things in medicine that just can't be explained. Like when the sequestrum was building up and my body reacted with severe bowel inflammation and kidney problems secondarily, but the internal doctor said I was fine and once again suggested I see a shrink. I couldn't leave the house for a weak due to the inflammation that caused bleeding and pus and lymph node swelling that made me look like a man. The body has unusual ways of dealing with illness and with fighting back. What secondary problems have others experienced or do others have? I know the secondary problems were NOT a figment of my wild imagination and till the day I die I will firmly believe that it is all related to the chronic infection sitting prettily, smug like a bug in a rug in my mandible.

Alle....hold on, enjoy the little things in life now, keep your spirits high (I know its difficult but in order to heal properly should you accept the surgery, you need to stay on top and avoid any excess stress now that would send you into an adrenal roundabout, excess cortisol due to stress only prolongs the agony, prevents healing) follow your gutt feeling and provided you feel safe and like you are in good hands and the diagnosis is confirmed, then I take back my opinion and I would go for it. From what you first posted it seemed like you hadn't recieved all of the proper tests. There is obviously something very wrong if it spread faster than any textbook case and not many patients have the good fortune of being offered the advanced surgical procedure you have been offered for osteomyelitis. It has a huge success rate in Asia in terms of Fibrous Dysplasia. There is no other way of dealing with certain bone diseases than by literally cutting out the part of the affected body that seems to be the target. Just read up on it, plenty of scientific articles on the procedure, and it will make you feel more comfortable with it. If my surgeon offers it (I doubt he will now after he reads my file and finds I had a loud discussion with his superior), after 4 years of hell, I will opt for it, regardless of the scar on my thigh and under my chin and neck, there are plenty of cosmetic forms of treatment to deal with the scars later, but the permanent damage from chronic pain after years of trying to bear and grin it is not worth it. I am at wits end in terms of hypercortisolism and do not know how to undo the roundabout and get it under control, but that is the price I have had to pay for doctors not listening to me in the acute phase and allowing me to get into the chronic stage. What peeves me now is the way they all simply want to send me to the shrink for something that never had to even happen had they done their job properly. I don't handle stress well, so I know it is a big problem for me and in all of my healing, but I am aware of it and do all I can to keep it under control. I count to 10, use the good old "whoosah", pamper myself with hot baths, aromatherapy, I eat what I can (provided I can chew) that's healthy and keep active. But yet I fail to get the whole thing under control because the permanent 24/7 pain keeps aggravating adrenalin and keeps me "alert."

Off to work. Sorry for another long post. I would really be interested in reading how people deal with the stress, what secondary health problems they have had or have due to osteomyelitis and that doctors deny.

Take care everyone, and i apologise for being so proactive here....I guess it is clear why I piss all of my doctors off.

Marie

Reply
OreoDancer, Community Member
11/18/09 2:25am

Hi. did you go ahead with the surgery? I am sorry that I didn't read this sooner. I come on this site very infrequently because it seems to hard to get around. Please let me know how you are and whether or not you went through with the surgery. I would love to hear from you.

 

Susan

Reply
alleycat, Community Member
11/18/09 1:30pm

Hi

 

When my CSO was diagnosed they too said the bone was thin and full of holes.  I had to quit several sports I was in and I was an avid shooter (shotguns)  I had to give that up they were afraid the jolt would cause a fracture.  But the surgery was done.  The numbness I would guess is from the swelling and pressure on the nerves.  Its been 30 yrs since the first surgery and I have the numbness in my right lip and chin area.  Ive learned to wipe after each bite just in case there is something there.  LOL  Did you have your surgery and how did it go:

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alle, Community Member
11/27/09 10:43am

hello everyone! I did have the surgery, actually I had 2. The first one a section of my left mandible was removed and the plate was put in. The second a week later a flap was taken from my left leg of bone, nerve, muscle, and tissue, and was put in around the plate to support it. Hopefully I will get some feeling back in my left side of my bottom lip in about a year the surgeon thinks. This has been the most difficult experience of my life and the recovery is slow. I spent 4 days in the ICU initially after the 2nd surgery then 2 weeks in recovery unit. The pain has been excruciating to say the least. I actually had to go back to the hospital 6 days after I was released because I could not stop vomiting and was so dehydrated. It has been 3 weeks since the second surgery and I came home from the hospital hopefully for the last time yesterday. The stiches will be removed next week and I start physical therapy on my leg and speech therapy next week as well. Also I am starting back at the hyperbaric next week. It is a long road ahead of me but I am happy I did it. Now I have a chance at a really being done with this nightmare. They did a culture and found a fungus in my necrotic bone that was removed so I am on medication for that, but they have taken me off of all the antibiotics. I have struggled with this and knowing whether or not this is the right choice, but I have a new infectious disease doctor and he is telling me that the antibiotics have dropped my white blood count so low for so long that my body can't fight the infection and it has allowed it to spread faster then it should of. I'm trusting he is right. It is scary to be off all the antibiotics after surgery sinceI was on them for 9 weeks straight before the surgery. Anyway, thanks for all the concern! I hope everyone is feeling not too horrible. I will let you know how my progress is with healing. I can't wait to be able to walk normally again!

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Barbie, Community Member
2/ 8/10 1:33pm

Alle - How are you doing since your surgery??  What doctors did you deal with, and are you pleased with them???

 

 

Reply
alleycat, Community Member
11/18/09 1:30pm

Hi

 

When my CSO was diagnosed they too said the bone was thin and full of holes.  I had to quit several sports I was in and I was an avid shooter (shotguns)  I had to give that up they were afraid the jolt would cause a fracture.  But the surgery was done.  The numbness I would guess is from the swelling and pressure on the nerves.  Its been 30 yrs since the first surgery and I have the numbness in my right lip and chin area.  Ive learned to wipe after each bite just in case there is something there.  LOL  Did you have your surgery and how did it go:

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karen, Community Member
2/10/10 12:47pm

Hi there how are you now? I might have been reading my own medical notes reading what you have been through, my problems started in June 2007 and the consultant has now suggested the op that you were due to have. Like you were I'm scared stiff so please let me know how it went. Thanks so much, all the best Karen Sealed

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Gale, Community Member
2/11/10 1:46am

Marie~Hi from Jacksonville, FL.  I have osteo of my lower jawbone.  What is the name of that super-duper clinic here that your maxfac surgeon goes to?

 

Had surgery in Coumbus, Ohio, 12/09 but the infection came back...dusky nail beds, fever, burning feet, hands and face, aches all over...not good!  Surgeon in Columbus used a Cavitat Sonogram which found the massive problem in the bone, I had been to many dentists and oral surgeons to no avail.  Dr Wesley Shankland, at least got the 2 implants that had gotten infected out of my jaw.  My email is gale5408@aol.com

 

Do you suppose it was Mayo Clinic?  Wonder which Doctor in Jacksonville, FL?

Thanks, Gale

Reply
Denise, Community Member
3/ 6/10 1:04am

Gale, (and all people here)

I really would like to hear your experience with the cavitat sonogram.....

my problem began after a root canal and excruciating pain the week following the initial filling. I would wake up in horrible radiating pain through my jaw that would sometimes go up into my ear. I was finally given an antibiotic and another cleaning of the canal, but over time and in retrospect, this was only the beginning of my nightmare. I was told by more holistically oriented dental professionals that the real problem originated when four wisdom teeth were removed when I was 19 years old and that there were cavitations (large holes in bone from unhealed infection in those sites) that then spread gradually to adjacent areas over the years. I was diagnosed in 2004 after one full year of golf ball sized areas of pain on lower left mandible that began approximately 6 months after the root canal on tooth #20.  My jaw  would swell, I would be in pain for approximately 7 days, it would disappear and then within another month or two, it would begin all over again. Finally, I went to a world renowned maxillofacial surgeon at a major medical university and was diagnosed with all of the tests; nuclear scans, CT scan, etc..... After one full year of horror, I had the  portion of theinfected bone removed/debrided with a surgery and of course, more rounds of antibiotics that I can even count. I did not want a PICC line inserted. Also, the antibiotics stopped working as efficiently and I was just plain fed up and concerned about long term use and eventual resistance.  I  also developed allergies once or twice and had to keep switching the antibiotic. I began to realize that antibiotics were really not the answer. So, I stopped them altogether about two years ago. I was shocked to find that it made no difference and that the surgery really was the most effective. In my case, I have sclerosed bone on the left mandible  (and the same process crossed the midline and is in the right lower mandible, but in a more minor way)and now, when I have flare ups, I do Ibuprofen for a few days and it has the same effect of subsiding the pain and swelling, etc. within 4 or 5 days but the severity of the swelling and pain is nothing like it was prior to the surgery. Also, I have done acupuncture, herbs for immune system health, supplements and even things like bodywork and chiropractic. I have discovered and now believe that in my case, it may be autoimmune in nature where the body developed extra bone to encase the infection (original) and has to do with too rapid cell turnover of osteoblasts and inflammation which seems to be markedly exacerbated by stress... I have concluded that it may be in part old infection (now encapsulated and as others have pointed out, with necrotic bone, blood cannot properly flow through the area) and inflammatory in nature.

I did EXTENSIVE research while being diagnosed, read all of the journal articles, etc. The consensus seems to be that long term antibiotic therapy is not effective. Also, multiple surgeries might be needed to continually remove reinfected (or old infected ) bone and one article I read suggested that saucerization with a bone graft from non- infected bone might be the ultimate solution and in one longer term study, there was the most longer term relief and cessation of symtpoms with this approach. My surgeon has cautioned me about continuous surgeries as it weakens the jawbone and one can get fractures and then, other problems.

Psychologically, after struggling for many years, desperately going from doc to doc, obsessing, etc. , I finally just accepted that this is what I have, that NO ONE has any good or consistent answers and it is indeed a poorly understood disease, there are at least five different theories about etiology, etc. When I stopped struggling and trying  to keep changing it (of course, easier said than done... when dormant, a lot easier, but during an acute flareup, it rears its ugly head and then it's about just managing it), this seemed to paradoxically help quite a bit because I was a lot less stressed out about it. 

I must say that I was unbelievably happy to see this blog.... I don't know why I didn't find this sooner but I am grateful that someone put it out there because NO ONE can understand this unless you have suffered with it. It is indeed frustrating, can be very debilitating, and so on.

I would be interested in an ongoing blog or even a chat group? in a chat room where we can all interact,although I'm not sure how to set that up.

Someone somewhere here suggested the book, "The Root Canal Cover Up" by now can't remember the author. It is based on his research over a 30 year time period with rats or mice where he proved that root canals are lethal as all of the tubules cannot be properly cleaned out and necrotic toxins from infected teeth seep into body tissues, etc. and over time and with several of them, this can create secondary health problems. He also proved that when the root canals were removed, the tissue debrided and cleaned out and the root canal teeth

 were removed, health substantially got better. More recently, I had a cracked tooth on the more non-affected area of my jaw (right side) and I had the option of doing a root canal or pulling the tooth. I opted for the latter and am really glad that I did so.

I also have gotten through this relatively in one peice by trusting my own instincts, which is how I got to the point within myself where I concluded that the antibiotics were not helping and in fact, with each use and the accumulation of over 40 rounds of them, were harming more than helping. In my case, I feel that I have made the right decision. My ID specialist was also wary and did not understand, even if the microorganisms (which histology and culture could not come up with anything unusual after surgery) were of low virulence (this is what the surgeon told me), why during a flare up and if I did nothing but Ibuprofen, it would subside anyway and on its own. If it were truly an infection, she reasoned and of low virulence, it would still continue to spread and nothing BUT AN ANTIBIOTIC WOULD WORK. Thus, my conclusion.

Anyway, if anyone wants to actually structure a chat  in a chat room where we can do a live session, so to speak, this would be great! 

Support is essential and it's so hard to find with this problem, because it is so rare and there is so much conflicting information. My heart goes out to those of you who have been through nightmarish experiences that only get worse.

The medical system is indeed flawed and if you are not assertive and your own advocate, we are all in BIG TROUBLE. I myself went back to the endodontist who did the root canal for three years complaining of what I described as the intermittent on and off process and each and every time, he could never find a problem with simple xrays of the root canal tooth he did NOR did he refer me to a specialist. Because it cropped up initially only every few months, I did not assert and demand a referral either. I wish I had gone to an oral surgeon back then because if I had, it might not have become as bad and severe as it did.

Anyone, feel free to email me at denisemont@aol.com

Reply
ladyhawk, Community Member
8/19/10 5:20pm

I would love to know if a chat room or support group have gotten started please let me know I have been dealing acute oestiomyelitis for 12 years and am 10 days out of surgery to remove 3/4 of my lower jaw bone any info on this would be helpfull. My e-mail is ladyhawk_love@yahoo.com. Thanks.

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Marie, Community Member
8/26/10 6:28am

Dear Ladyhawk,

Perhaps you mean "chronic" osteomyelitis. It is no longer considered acute after the first month.

What are they going to be replacing your mandible with? Titanium prosthesis? Bone graft from the lower leg? And what has led the oral surgeon to come to the decision to remove 3/4?

Whether a chat room has bee set up...anyone know? This however is sort of a support group.

I underwent radical decortication a couple of months ago and had 75% of the buccal part of the bone decorticated and debrided. The lab results came in confirming the diagnosis as Chronic Actinomycotic Sclerosing Osteomyelitis. Nasty stuff but I am just glad that after battling with doctors for so long, the PET scan and lab results got to the bottom of things. I am on IV mega doses of Penicillin G, which should last 6 months and then everything will be re-evaluated. If things do not prove to have improved, then half of the mandible and the TMJ will need to be replaced. I am at the point that I do not care anymore, I just want this done and over with. I am exhausted from it all and want to move on in life.

Take care everyone...hope everyone is doing well.

Marie

Reply
ladyhawk, Community Member
8/26/10 11:27am

they are saying it is chronic sclerosing ostiomyelitis. They replaced it with a titanium plate for now and now I wait 6 months then they want to go in and add bone to it then another 6 month wait to add teeth back that i lost and make me look like me again! They removed 3/4 of the bone because that was how much was affected in the scans and they wanted to get it all so I didnt go through all this and it come back. I have already been down the i.v. antibiotic, debridement, hbo, ect. road and it did not work. I too am exhausted with it all but I am missing my teeth already and this no chew diet is driving me crazy already and its only been 18 days since I had my surgery.

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Marie, Community Member
8/26/10 11:59am

Hiya again Ladyhawk.

Whereabouts are you located? You are getting the right treatment with the "Marx" method. It is the "safest" approach to CSO or any form of osteomyelitis. It is best to wait 6 months with a titanium plate before putting a graft in, just to be certain the infection does not spread into the two amputated ends. You are brave so hang on in there. I had my jaws wired together after the decortication for 4 weeks and thought I would go nuts, even thanks to the muscle spasms caused by the little bit of leeway I had from the elastic bands.

My fingers and everything are crossed that it all goes well for you. I think everyone is afraid of getting to the point you are at, but there comes a point where one is simply fed up with it all, the antibiotics don't work, the rest of your body gets all messed up from the antibiotics, mind you your whole life is going nowhere thanks to the problem, so one ends up accepting and coming to terms with mandible resection and sees it as the only way out of the whole mess. You are fortunate to be heading towards the end of your journey. Just remain positive and stay strong.

How did your CSO begin? Was any bacteria ever cultivated?

Take care....

warmest thoughts,

Marie

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ladyhawk, Community Member
8/27/10 2:49pm

I'm in Orlando, Florida have surgery in Gainesville at shands. I dont know if I am on the Marx method or not I was told 3 months until after they had done the surgery and then 2 weeks went by and it changed to 6 months. Day I checked into hospital was when I was told I would lose all the teeth so didnt really have time to process it all. I am trying to stay positive but it is really hard when I feel like no one really told me how this was all going to go. They all like glazed over all the stuff I would have to deal with and the time frame was so wrong its crazy. It all started in 98 with an abcessed tooth that a dentist pulled and didnt treat the infection. The infection got into bone and festered for like 9 months while everyone thought it was teeth and i lost all of them on the right lower jaw until where it was swelling had no teeth left did they decide to look to see if the bone was infected. It was and I was put in hospital and told if I had not gotten something done I would have died. I had a debidement and i.v. antibiotics and hbo therepy. It worked for almost 2 years but than I was back in pain and they told me I still had osteomyelitis and at the time the dr I had would not do anything else put treat the flare ups so I was being treated just for the pain. In 2005 I was sent to shands to see what they could do for me and they said they wanted to resect the part that was affected and I figured it was only a small part of my jaw so do it now before it get bigger and spreads causing more pain. Day before surgery the doctor backed out on my saying I was too young and that he didnt want to risk doing more damage to the nerve that we had found out had gotten messed up during the debridement surgery. Then I moved out of state and lost insurance and no one would even look at it for me. I moved back to Florida in the beginning of 2009 and got a job finally got some junky insurance and started the process again but this time no oral surgan wants to do anything because the joint is now affected and no one was willing to do a joint replacement. I ended up in the hospital in december of 2009 and the id doctor that was dealing with me told me they are doing the join replacement at shands and that I needed to go back and see the dr again that I saw before. I got a refural from him and went to them. I saw them and they confirmed that I did have cso and that it now went from the joint on the right side to cover about 3/4 of my bone now so they wanted to take it out. Now here I am and I'm trying not to get depressed and lash out at everyone because of the way I feel. If the dr. would have done the surgery in 2005 it would have been like 1/4 of the right side and that would have been it. In 2005 the only thing they got to grow from cultures was yeast and they said that was normal. I think this time they are saying after a week they saw glimses of strep. Thanks for listening! Sometimes I just feel so alone and like no one understands what I'm going through.

 

                                      feeling scared and alone,

                                               Ladyhawk

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Marie, Community Member
8/27/10 4:05pm

Hello again:)

Thanks for sharing your frustrations. You will find you are not alone here and you are definitely alone with your feelings of frustration and anger. Many of us feel similarly....that had someone listened to us years ago, we would not be where we are today. Had somebody listened to me 5 years ago after my dodgy wisdom tooth extraction and the mandible actinomycotic infection spread to my temporal bone forming a lump, I sure would not be where i am today. I have until the end of the year for the verdict on whether or not I will be heading your way, ending up with half of the the mandible resected and TMJ total prosthesis on the left. Marx is an oral surgeon who refined osteomyeliitis treatment techniques, his speciality. He suggested and proved a 6 month waiting period between resection and implant as being safest and most efficient. Others support the method of rushing into things and doing the implant at the same time as resection, which could lead to simply causing the infection to spread from the amputated ends into the bone graft, or the titanium prosthesis being rejected by the body. That is why I wrote, you are fortunate to be undergoing the "correct" way. Try to see that positive aspect. Do not rush things. It is extremely important now for the ends to heal well, to remain infection free so that the bone graft or whatever material will be used, is accepted by your body. I spent my first week in hospital (total of 7 because I was also misinformed) with a foul mood, yelled at the nurses the first day and was an "uncooperative" patient but then I settled down and we were all a little soppy on discharge day. I was lucky to have a good team of nurses who I found very supportive on down days and who helped me get over the anger I had towards the doctors, especially those who claimed over the years that I was a hypochondriac.

Anyway, we all have our stories and they are all sad and frustrating ones from what one reads here. We all need to realise that we have been given this test for a reason, to make us better people, to help us appreciate the little things in life, to reevaluate our values and morals etc. Simply, I believe there is a reason for everything in life and this belief helped me also get over my anger. I tried to find the positives from all of this and it was the aforementioned "deep" things I realised changed in me. Life is short, and believe me, even having osteomyelitis has a reason....just think about it, try to figure out why and what positives it has perhaps brought you. Try to see the other side of it rather than just the fact that you have lost 3/4 of your jaw due to neglected care. Sounds nuts but try it.

Otherwise, how is the pain now? What scares me most personally in terms of resection, is the thought of the pain. My infection got into the nerve canal so my mandibular nerve has been buggered up for years and half-dead. I have problems in my head with accepting a part of my body "missing" and potentially causing phantom pain.

You are brave and a fighter from what you write so use those qualities to help heal well now, both physically and mentally.

Take care...

warmest wishes and a big comforting hug!

Marie

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ladyhawk, Community Member
8/27/10 8:37pm

Marie,

 Thanks for all the words of incorragement (sp) I'm just down but I will get it together and pull this around and find positive. Guess its like losing someone in your life I just need to greave the loss of a part of me. The surgery pain was not as bad as the cso pain I was dealing with so that is a good thing. I shocked the doctors when I asked for the pump to be turned off and that the morphin was not working. They put me on roxiset(sp) and that seemed to work better. I at times had to fight when it didnt last long enough but I always got something to help. My nerve like i said was nicked during the debridement so i know your feelings. they tried to save it but i think in the end they had to cut it so my chin and lower lip is numb but i guess ill get used to that. I wish I would have found this site before i had this surgery so i would have been better prepared for what was really going to happen. Thanks again you are so helpfully and its good to be able to talk to someone who knows what I'm going through. If you want we can e-mail eachother on personal e-mail and keep in touch. My e-mail is ladyhawk_love@yahoo.com. Where are you again? you can also find me on facebook my name is tamara terrell. If I can do this you can to so you keep your head up to and maybe the stuff you just had done will work for you and if not and you end up where I am I'll try to be there for you!!! Waiting to hear from a new friend again soon.

Tamara

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alleycat, Community Member
11/15/09 10:05pm

Hi to all of you.  I am new to this site so be patient with me. 

My name is Cindy and I am 49 yrs old.  When I was 17, I started having alot of pain in my lower jaw.  To make a lonnnnggg story short.  I was treated by an Oral surgeon who had no ideal of what he was dealing with.  After almost 3yrs my parents finally got me to the Marshfield Clinic in Marshfield Wis.  I am from Green Bay.  At the clinic they did numerous test.  One was a biopsy of the underside of my lower jaw bone.  They found I had Osteomylitis.  I was sent to the Mayo Clinic.  Dr. Eugene Keller treated me.  All my lower back teeth were removed and the infected bone scraped away.  My jaw was packed with gauze and every week it was removed and replaced.  I was in the hospital for 45 days.  I was on interveinous anitbiotics the whole while.

The following year I had to return because the infection was still there.  This time all my lower teeth were removed and the same process was done.  Again Iwas in the hospital for 45 days.

The following year I had hyperbaric treatments as an out patient at St. Lukes hospital in Milwaukee.  Again 45 days.

The following years I married, had three children and suffered GREAT pain.  The pain was from the TMJ that developed. 

I am a police/fire/rescue dispatcher and I worked the night shift for 7 years.  I have to tell you those were the worst years of my life.  There were times when I really didn't know if living with the pain was worth it. The stress of not enough sleep and having 3 small children at home was causing my TMJ problems.  I did not know this until finally a day shift opened and I had enough seniority to get it.  Gradually the bouts with the TMJ became fewer.  I am happy to say that now 30 years later I am almost pain free.  At least I would call it pain free!!

My advise to all of you who have Osteo....If your Doctor has not taken the drastic steps of removing your teeth and scraping all the infected bone away you need to seek another Doctor!!

The years of pain that I have suffered was from TMJ.  I had therapy for that.  I treated it with infared heat lamp.  Be careful not to burn yourself.  I used moist heat on my jaw.  I took a white tube sock and filled it with regular rice, tied it shut and heated it in the microwave for 3 minutes.  This sock works great and you can use the same one over and over again.

I prayed, cried and prayed again because the pain was so bad.  I stuck it out and got rid of the stress.

I am happy to say that just this friday I saw Dr. Keller.  I am looking into getting dental implants so that I can have bottom teeth!  Its been 30 ears but I still miss them and would like to try it. 

I feel for all of you that are going through this.  I know how painful it is. 

Good luck and God be with you all

 

Cindy

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Cici, Community Member
1/ 6/10 10:49pm

I am new to this forum.  Doctors are not in agreement whether I have osteomyelitis of the jaw.  Two years ago I began to have systemic illness after a root canal.  This went on for 13 months.  I saw 12 physicians before finding one that would stick with me and not tell me this was all in my head.  I developed tachyardia, high blood pressure, and my circulation began to fail in my hands and feet.  My hands and feet turned blue from circulation failure, and doctors thought I had endocarditis.  They knew I had infection, but they could not find it! 

 

My hero physician asked me about dental work.  I had the root canal 3 months prior to developing issues.  After discussing this with my doctor, I went to an oral surgeon and asked him to remove the tooth that had the root canal.  Reluctantly, he did.  He found infection under the tooth.

 

I was well for 2 years, but just 5 months ago the symptoms came back.  I lost feeling in my hands, and had lymph node swelling for the entire 5 months.  I went back to my dentist, and she found a crack in the tooth beside the earlier one that was extracted.  I removed that tooth.  My face swells daily.  Not terribly, but enough to notice if you look at it, and now my heart rate has increased and blood pressure issues have returned.  An MRI showed bone marrow edema that covers the entire area where teeth have been extracted.  It has been 2 years since the original extraction and 6 weeks since the second one.  My dentist says there should not be any edema in the bone marrow in either area. 

 

My dentist and favorite doctor want the area biopsied.  The oral surgeon and infectious disease doctors want to wait and see.  The ID doctor actually asked me if panic attacks could be causing the heart rate issues!  Navigating the health system to get treatment has been a nightmare. 

 

Has anyone else experienced systemic illness from osteomyelitis?  Did anyone else have heart issues?  I am at my wit's end! 

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LisaH, Community Member
1/12/10 9:46pm

Hi Cici,

 

No heart issues on my end (at least as far as I know!)-although our dental care is directly connected to our heart health, so it makes perfect sense that your heart could be affected.

 

Personally I have had other health problems besides the Osteo.

Prior to being diagnosed with Osteomyelitis I had a serious case of Mono 3 years ago, then began having dental problems-including my first ever root canal (not sure I ever needed it) and periodontal work. One year later as I suffered extreme tooth and jaw pain, I was then diagnosed with the Osteomyelitis.

That was 16 months ago. I had nuclear scans, MRI's and recently a CT scan. I was on antibiotics for 14 months-5 months on a picc line, had a jaw biopsy, never had a debridement, but still suffer from jaw pain. I was also diagnosed with Chronic Fatigue which is very difficult to deal with in addition to chronic jaw pain from the Osteo.

I have however, also had chest wall pain for the last 2 years after a breast infection (very unusual since I'm in my fifties) and was told by my Infectious Disease doc, that the bacteria that caused my Osteo (actino for short), can also live in the chest wall (besides the jaw) and one other spot in the body-can't remember where though. In addition , I also have numbness and tingling in my left ankle , foot and toes.

Everything seems to have happened to me on my left side. Seems strange.

My doctors don't know if the breast infection caused the Osteo or vice versa.....or if they're even connected at all. No idea what came first or how long it's all been going on besides the extreme acute phase that started 16 months ago.

This is very tough stuff and from most of the posts, Osteo seems to be fairly robust and difficult to heal.

The fact that you have a great doctor that you trust is huge. You're very fortunate.

An MRI is the key image scan that clearly showed the Osteo on me. If you haven't had one, this may help in the diagnosis. Hopefully you have good insurance. It sounds as though you also have good instincts-asking to have the teeth removed since you knew there was something going on in there.

I hope that you arre able to figure it out soon. The quicker you get a diagnosis, the sooner you can start treatment and feel better! Good luck!

Lisa

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Barbie, Community Member
2/ 3/10 1:06am

Lisa - Do you have a doctor(s) that you would recommend for treating osteomyelitis of the jawbone???

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Barbie, Community Member
2/ 4/10 9:41am

Cici - I have been dealing with osteomyelitis of the jawbone for over four years, seeing multiple doctors.  It's such a difficult disease because it's still rare and very difficult to treat.  I was having high blood pressure problems a year ago until I was put on a picc line for six weeks.  I have been on incredibly high doses of antibiotics for the past year after the picc line.  In my case, the MRI is the only testing that has shown what is going on.  Apparently, I'm getting better (according to the multiple MRI's), but I am in a nightmare with pain and numbness in the area of two tooth extractions.  My opinion is that this CSO has affected my immune system, so I am vulnerable to all sorts of other problems.  What doctor(s) are you dealing with?  You can e-mail me directly at ramsland3986@hotmail.com

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Cici, Community Member
2/ 6/10 8:58pm

I sent you an email.  I would love to talk to you!  I have my first appointment with the surgeon and anesthesiologist this week.  Then I have surgery next week.  They are planning on doing the biopsy of the bone to make a firm diagnosis.  Having to work with a team of doctors with different specialties is hard!

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Marie, Community Member
2/12/10 2:46am
Dear Barbie and all, Sorry for budding in. Do you have CSO or typical classic Osteo? I have a major flare up after a failed nerve block was aplied to at least provide some temporary relief because nobody knows what else to do. The pain was so bad the first two days my stomach wanted to turn. I still believe I have CSO, however, there is little or no experience here with it. "My CSO" or whatever the heck it is shows up on my CT. The pain is magnified in an MRI so I am horrified of having one done. I have heard things like = it's Pagets, it's fibrous dysplasia, it's hypertrophic bone formation, it's heterotrophic ossification, it's CSO or it's some sort of osteo. I am fed up with this passive approach but have to now go through some sort of treatment at the pain clinic to prove the hospital (on their health insurance charts or whatever) that the pain is real and is coming from my lower mandible. I have numbing for two years that affects my lip and chin, leaving me feeling like a cripple when I talk. I can't stand the feeling and the pain clinic seems to be deaf to it all. At least they acknowledged the problem on the CT...I have heard others say "there is nothing there" when examining my CT when even I can see the problem loud and clear. I always got relief in the past when taking antibiotics so I am thinking of suggesting this to the pain doctor...maybe it will slowly sink in that it is not just expanded bone, but bone affected by CSO. I do not see the point of taking neuros or antidepressants. They don't work and only leave me feeling lifeless and suicidal. The nerve is friggen compressed!! I sometimes have to wonder why more attention isn't given to osteomyelitis. The clinic I was visiting last year is more than happy to be breaking everyone's jaws and repositioning them and largening chins or shaving chins to people who look absolutely fine in my opinion but seem to have some sort of a personal, mental complex. But they wouldn't spare me a minute!! I am fed up and sick and tired of living with this. Regarding the question concerning Jacksonville Florida...I am in Europe, I have no idea what clinic it is. Jacksonville can't be that big and the clinic is the main clinic there, if I understood correctly from my maxfac surgeon. I can't ask him, I have switched back to the hospital I used to visit, so I am now seeing his "colleague" and I will only refer back to him to resolve my TMJ arthroses, but he won't be pleasant when he learns I have finally "run away"... He kept promising this and that and never acted upon any of his promises... Take care everyone....this is a living nightmare, but be glad you have a diagnosis and your osteo confirmed. Marie Reply
Barbie, Community Member
2/12/10 9:35am

Hello, Marie

I am so sorry that you are suffering so!  My condition has been diagnosed as chronic diffuse sclerosing osteomyelitis.  I have been dealing with it for 4-1/2 years and have seen many doctors and have had lots of frustration during that time trying to get relief.  An MRI is the only type of scanning that shows my problem. 

Fortunately, it has been proof to the doctors that there is a definite problem.  I have been on a picc line and heavy doses of antibiotics this past year.  I have lots of pain issues (which baffles the doctors) and a general feeling of malaise from the drugs.  I am just going to begin with a pain management clinic.  The last doctor that I've been dealing with is an infectious disease doctor.  He has been treating the infection aspect, but that's it.

Keep me posted on how you're doing - I'll sure be thinking of you.  I don't know the situation in Europe, but I have been advised that a teaching hospital is the best route to go.

 

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Smiley, Community Member
4/28/10 10:42am

Contact Dr. Wesley Shankland in Westerville, OH.  He is saving my life and yes until I saw him it was a nightmare.  He has a website.  www.drshankland.com

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Jenny0822, Community Member
9/13/10 10:09pm

Is Wesley Shankland back in practice?  How often do you see him?

How has he saved your life?

 

 

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Smiley, Community Member
11/ 2/10 10:36pm

I was very ill for a couple of years and went to two Universities and had 2 pic lines and mainstream medicine didn't know what they were doing.  It is a long story.  I had also been to three other doctorsho  wdid cavitation surgery and by the time I saw Dr. Shankland my jaw was messed up from improperly done surgeries.  I was in seroius trouble.  I am telling you I believe Dr. Shankland is the best in the nation.  I wish you well.  If you contact Dr. Shankland tell him Ann told you to call.  God bless.

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Smiley, Community Member
11/ 3/10 9:56am

About 5 years ago, I ended up in the emergency room 2 times for out of control blood pressure.  I had a few weeks earlier had a tooth extracted and after that I was in so much pain. I went to many doctors 3 of which did cavitation surgery.  I had Picc lines and many oral antibiotics.  Yes, absolutely you can have heart problems and BP problems and numerous systemic problems.  You can get very sick and also have arthritic problems.  I thought I was going to be a cripple.  For all of you suffering form osteolmyelitis of the jaw there is great hope.  Finding the right doctor is the most important thing you can do.  I have been seeing Dr. Shankland in Westerville, OH for the past 1 1/2 year and he is who I would see if at all possible. God bless

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Cici, Community Member
2/18/10 3:50pm

Your tip with the tube sock and rice got me through some VERY painful episodes.  THANK YOU FOR SHARING!

 

CiCi

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Matt, Community Member
2/22/10 2:12am

Hi everyone! I'm another sufferer like everyone else. I was diagnosed with OsteoMyelitis just 5 months ago in my thorasic spine and I've been dealing with the pain and treatment side of it for about 3 months now. The worst thing is that I am only 22 years old with a history of health issues ranging from heart disease from birth to glacuoma and other more private problems : ) Anyway My name is Matt and I just wanted to tell my little story of whats going on like you all have and be there for any who might need help or someone to talk to. I did the iv antibiotics for 2 months and have had lots of CT scans and MRIs the past 3 months as well as a stay in the hospital for 3 days and still the infection persists and is worsening. I also was in a car accident 2 weeks ago (not my fault by the way) lol and I think that has made everything a lot worse for my back and for my infection.  I haven't had a decent nights sleep in more than 2 months and i'm on numerous sleeping pills and anxiety/ depression meds to help me through all of my issues but I just don't know what to do anymore.  The doctors think I still have an absess which they didn't drain or test when I was in the hospital so they didn't know which anibiotics to use and I had a very bad allergic reaction to the first one they perscribed to me and also now the absess is still there and I think has ruptered because i'm having a lot more pain and im sick and have chills and sweats as well as a fever. The anibitotics obviously didn't work and the docs say the might need to do a surgical prcedure. Anyway thats the gist of my story if you guys have any advice or comments for me you can email me at snowbrder528@yahoo.com or just write back on here. Thank You Everyone and good luck to you all!!!

 

--Matt Tyler

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lamppost42, Community Member
2/22/10 6:28pm

Hello everyone

This is my 1st time using this and i am not sure how to post or where.

 

I just found out that i have Osteomylitis of the jaw bone, how bad i am not sure, its still all soaking in and trying to figure out what all this is. just last week i had a bone biopsy done,and tooth removed. i seam to be one of the lucky ones that isn't hit with a great deal of pain, more worried and stress than pain. I will be returning to the Mayo clinic in Rochester Mn this week for a follow up appointment. again i am not sure what I can expect. My question is, has there been anyone out there that has had good success with this disease, meaning have the treatments been successful. I feel for everyone, but would love to hear some success replys. Would help pick me up and i am sure others.

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alleycat, Community Member
2/23/10 8:45am

Hi Lampost

 

My name is Cindy.  I had Osteo 30yrs ago and I too went to the Mayo Clinic.  My Doc is Eugene Keller.  I am totally clear of the infection.  I just saw Dr. Keller in December to see about getting dental implants.  I have had no lower teeth for 30yrs.  Dr. Keller felt my bone was in great condition and I could go ahead with it.  I decided not to.  I suffered for too many years following the infection to temp fate again.  Do you have Dr. Keller?  Feel free to email me.  cindytreml@yahoo.com.

Good luck

 

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Hopeless In Pain, Community Member
3/ 7/10 4:39am

Hello Wendy:

 

Thanks for the post; I've had a failed l-4 l-5 back fusion w/ hardware which is my doctors never advised me of even releasing me to work.  My pain never subsided w/ surgery, no oral pain meds. would work so I had the Medtronics 8627 L18 implanted...worked great for the 1st 4-5 years then started malfunctioning in addition to my next disc protruding into my spine as a result of the failed fusion.  Now I have this horrible pain in my lower right jaw...luckily I have a Great dentist who examinined the tooth & area extensively & diagnosed it as trigeminala..."Known as the Worst Pain Known to Man."  Well I have only had 6 episodes so far that last 3-15 minutes.  They seem to be brought on by taking drugs like Neurotin, Lyrica, Zinc and Magnesism.  When I have an episode it takes me to the ground holding my jaw, I have to get to my valiume and take 20-40 mg valium in addition to the 3 mg morphine daily via Morphine pump which renders me unconcious for approx. 3-4 hours.  Then my jaw is very sore for a couple days and I cannot drink anything cold, don't eat, don't shower, don't shave and cannot stand anyone touching me...it's a horrible condition and I Pray with this information someone can put the sysmptoms together and offer a cure for my conditi0on.

 

Thanks For all Your Help,

 

GaryInPain

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Marie, Community Member
3/23/10 9:57am

After writing so many hysterical posts here, I can openly say I feel somewhat relieved, with a sense of inner peace now that my unpleasant diagnosis has been confirmed. After 5 years of living hell, of which the last 2.5 have been by far the worst, leaving me wondering if there is any point in living, and feeling desperate as the only doctor who believed something was not up to par, could not get the proper cooperation he needed from other departments to confirm the diagnosis. He finally succeeded in getting a confirmation from a trustworthy source. I have chronic sclerosing osteomyelitis of the lower left jaw as I had suspected, and unfortunately, of the right temporal bone. We are waiting for a protocol from the US on how to proceed. But having undergone 40 oxygen dives with no effect and only stirring things up and causing crippling trigeminal pain, the hyperbaric chamber is not going to work as a supporting means of therapy. I told my doctor that if this has been alive and well in my jaw and on my temporal bone for 5 years, that I see little hope in simply treating it with antibiotics. The university clinic only has one other case and I think she has only had it for a little while so ATB therapy and oxygen are helping her. But I do not want to be compared to another case. It isn't a matter of battling with CSO for a year, but for five, with four biopsies over the past 2.5 years of my lower jaw, thereby surely stirring things up even more and two biopsies of the temporal bone mass. My temporal bone is "swollen" and where there once was a pea-sized mass, there is now an elongated bone lump causing pressure. I am hoping my surgeon won't put me through the hell of trial and error with IV antibiotics for 6 months...I just want to get it done and over with, hopefully with decortication. I have no idea how many teeth will take the toll....I am not even sure if it expands from my former wisdom tooth to my lateral incisor, or from my former first molar to my lateral incisor. I started having that tugging feeling and ache on the right side recently, which has made my stomach feel a little queezy and I am concerned if it hasn't already crept to the otherside. My "suicidal" trigeminal neuralgia is definitely due to the CSO...so I am beginning to see it saving the alveolar nerve a little sceptically. I think it will need to be "killed" to save me from further agony. I shall see and keep this support group up to date. I hope everyone is winning their battle and in good spirits. I guess the diagnosis also confirms the spells I get - irregular heartbeat, that ammoniac smell in my nose, malaise, achy joints, brain fog and simply feeling down in the dumps. I keep getting inguinal swelling...don't know if it can be connected with the infection. It has doctors baffled. The one concern in my case is my weight. I have always been scrawny but I am having a hard time putting on a gram of weight. My low weight will make treatment difficult.

Anyway, my heart goes out to everyone suffering from this. It took me 2.5 years of thorough investigation with my surgeon to get CSO confirmed. The previous 2.5 years before I met him, I had no idea what the heck was going on. It feels good to know what the problem is and that it is NOT in MY HEAD. I have had far too many doctors tell me I am a hypochondriac and that my jaw and the guck on my head are absolutely normal and a shrink would come in handy. Shrink my you know what. A part of me feels extreme anger inside towards all of the doctors who took my case lightly and as a matter of "just another nutcase with chronic pain."

Take care everyone. My thoughts are with everyone suffering from this. And if you don't have a diagnosis but deep down inside feel that it could be any form of osteo, then fight fight fight and don't let the doctors brush you away. You know your body best...I know mine and I wasn't going to give up my fight just like that even tough I have days when death looks like the easy way out.

Marie

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Barbie, Community Member
3/23/10 12:16pm

Marie - My diagnosis from my oral surgeon two years ago was "chronic diffuse sclerosing osteomyelitis."  I can relate to what you are experiencing and would be glad to give you whatever support you need via e-mail.  My address is ramsland3986@hotmail.com.

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Pat, Community Member
5/ 1/10 8:34pm

Hi, I am also new to this.   On Monday I go in for a cat scan of my jaw to determine if that is what I am suffering from.   At least one doctor thinks it may be so.  I take Aredia because of cancer in the bones and I had to have some dental work done and oral surgeon wound up pulling 3 teeth.   I have been on several rounds of strong antibiotics.  It helps for a while and then the pain returns.  I have seen dentist, oral surgeon and now my D.O. is getting the san done.   Will let you know what I find out.  I am just praying it is not a more serious disease of the jaw which can happen when taking this Aredia.

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juanita, Community Member
6/18/10 3:22pm

Hi my name is juanita, i do not suffer from Osteomyelitis but my 5 year old dughters father has been diagnosed with Oseteomyelitis of the jaw. It has already started to deteareate his jaw bone. as a concerned mother i am out to find everything i can about this disease. At this time he has no insurance so no one will take him. Is this life threatning with out the surdgery. If anybody can send me any kind of help i would appreciate it. I donot have my own email can u send any emails to my sister. her email is yellow_teddy_70@yahoo.com.

 

 

 

 

thanks for any help u can provide

 

   juanita and jasmine by the way jasmine is his daughters name.

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LILIGIRL, Community Member
11/ 9/10 6:26pm

Hi everyone, I was diagnosed with chronic osteomyelitis of the mandible earlier this year after a botched job of having  my tooth pulled. I had many abscesses, many surgeries, months of feeding tubes and picc lines. Luckily my osteomyelitis was caught within months.  I no longer have infection in my body but I still have pain in my jaw, I have lock jaw which is getting worse again, and I have many bone spurs on my muscle and bone.  My mandible still looks like a moth ate it.  Doctors are afraid to perform any surgeries (debridement/tmj) because all the abscess I had.  Even though the bone damage has stopped getting worse (thank god) I dont know what to expect in the future. Can it come back? Will I always have this pain? (drs think it is neuropathic but i have it in my jaw joint, where the bone was damaged, and on my massiter muscle)? Is it over? will the TMJ go away? Will I always have problems talking with pain and swelling? I cant find any information on the net. My doctors are fabulous but I still cant really find out what to expect long term.  Will I be seeing Drs for years? Thank God for this site. Over the last 6 months it has been a life saver but I would love to know about aftercare and long term reality with this disease. I would love to hear from those of you that have beat this or at least no longer have an active infection in your mandible.

Thanks

Lisa

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Danielle, Community Member
12/ 5/10 12:49pm

Lisa,

 

I am a physical therapist.  I have not yet been diagnosed with osteomyelitis in my maxilla, but believe strongly that it is what I have.  I see the oral surgeon for the 4th time tomorrow; however, not about me.  About you.  I have a wonderful physical therapist in my office that does craniosacral therapy.  You can contact the Upledger Institute or look at their website at www.upledger.com and go to "Find a therapist".  I, being a physical therapist would recommend finding someone that is a physical therapist and is certified in Craniosacral through Upledger (there are other companies, Upledgers the orginal), so that your insurance will pay them the treatment as physical therapy services.  A lot of insurances do not have benefits that cover going to a massage therapist.  As severe as your pain still is, you will need several treatments, but it is a miracle treatment and could greatly help your symptoms. If by any chance you are in the Fort Myers, FL area, that is where we are.

 

I have one question for you and the others here about my own symptoms.  When I eat, I feel the bones in my right maxillary and palate area swell and then the pain increases.  It even happens when I brush my teeth.  It's horrible.  Does anyone else have this problem?

 

My prayers for all of you to find the help you need!

Danielle

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lili, Community Member
12/ 9/10 8:14pm

Sorry Danielle,

I forgot to answer your question.  Any use of my mouth such as eating talking etc, brings on swelling in my cheek, my massiter muscle,  and also along the bridge where my rear molar was removed.  It has occured since the beginning and still occurs now.  I have to use a soft bristle brush and sensadyne to brush my teeth.  My bone does not feel like it swells but it puts out a constant dull ache.  The muscles and soft tissue are what feels swollen.  I will say that the pain increases with the swelling.  Currently  my pain is much less when I wake in the morning compared to the evening.  My pain was constant and terrible all the time though from March through August with it lessening gradually since then.

 

Hope this helps

 

Lisa

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Danielle, Community Member
12/ 5/10 4:01pm

Just a quick warning though.  DO NOT do any type of massage, physical therapy that involves manual therapy or craniosacral therapy if you still have an active infection or even just think you might!!!!  It can spread the infection!  Exercise would be great to build the immune system and help increase your energy.  Any other modality is taboo! 

 

In my prayers,

Danielle

 

 

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lili, Community Member
12/ 9/10 7:35pm

Thanks Danielle,

 I will  ask my docs about that.  Im not sure if it will help the TMJ or not.  I have multiple locations of ossification and multiple scar bands, the diameter of pencils, in my cheek.  They are afraid to do any surgery to fix it since I have had 5 surgeries so far and three of those were emergencies due to abcesses forming in my neck and cheek.  

 It is just so frustrating because the pain will go then come back and I don't know if the infection is back or not. Like I said the docs think the pain is neuropathic but why does it come and go then? 

 I hope you dont have osteomyelitis but if you do I hope they diagnose it soon.  I was lucky that my docs took me seriously. 

 On a good note I was free of infection after six months of ivs and oral antibiotics.  I am just concerned that they feel the battle has been won so they aren't concerned about this hideous tmj, the pain (much less severe but still pain none the less), and the swelling/awkwardness in my cheek, teeth, chin, jaw.

 

I desperately need to vent but nobody really understands except for those of you on this sight.

I will say that I did not have any debridement or HC therapy.  Mine was treated entirely with antibiotics (cipro, zocyn, clendamyacin) and feeding tubes.

But I dont think it is gone due to the way I am feeling even though my labs come back normal.

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Danielle, Community Member
12/ 9/10 9:14pm

Lisa,

 

Vent all you want.  I know that feeling.  After your response and then reading Natalla's post I am positive that this is my problem. After 9 dental appts (3 dentists), 2 endo, 4 oral surgeons (3 different drs), 2 extractions, a CT of my sinuses, a CT of my head, 3 months on oral antibiotics etc etc over the last 6 months and the oral surgeon is now telling me that there is nothing more he can do for me, I need a neurologist, when I don't have nerve pain (at this point).  I'm so lost.  My family doctor has finally stepped up to help now that the dentists/oral surgeons have written me off and he order a 3 phase bone scan and blood work.  I have that done next Thurs, but then what?  He tried to take me of the oral antibiotics.  I stopped them yesterday and the right side of my face is bigger today then ever before. He started me back on them.

 

I'm just terrified.  I'm self-employed and own a decent sized PT business in Florida, which means Dec, Jan, Feb and March are my busiest months. I have 4 employees, but it can't run by itself by any means.  None of them are full-time or management material and I have looked for another PT, but can't find one.  I work 80-100+hours a week. I'm single and live alone.  I have no one really to help me. I don't know how I am going to do what I need to do to get better. 

 

(Back to professional mode..lol)

From that PT perspective though Lisa, if you think you still have infection, don't do the cranialsacral until you rule it out.  When was the last time you had the 3 phase bone scan done?  You need to have it done.  It's your life not the doctors, insist! 

 

CranialSacral Therapy (CST) is the best treatment I have come acrossed for TMJ and any cranial disorders.  I've been a PT 15 years.  We are required to do continuing education and I have taken a lot of courses on chronic pain. CranioSacral can help neurogenic pain also, but doctors like to use that diagnosis when they can't figure things out. 

 

Your symptoms don't sound neurogenic to me.  Is the pain burning or shooting? Then it would be nerve pain.   Can you put your fingers right on where you think the source of the problem is and that spot/area is sore to touch?  Then it's that spot (inflammation or infection or something).  This is the argument I've been having with the incompetent oral surgeons that I have seen lately. (oops)

 

Anyways like everything else (CST) can help or may not make much of a difference. You won't know until you try it.  I know my therapist could help the TMJ, he is awesome. Would it help all the way, may be or may be not.  I would say it couldn't hurt, but it can if you have an active infection. So that absolutely needs looked into more first!  The bone scan should be able to distinguish between inflammation from having the surgeries and ongoing infection.  Keep me updated and vent. (dhall12345@embarqmail.com)

 

Prayers for all,

Danielle

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lili, Community Member
12/11/10 10:02pm

Hey Danielle,

I hope you are doing ok.  I went to the surgeon this week for my check up.  He didnt see any pus but ordered blood work since I had the swelling a couple of weeks ago and because "something feels off to me".  My sed rate was normal and my crp was a bit elevated but nothing major.  Luckily they really listen to me when I think something is up. I can call and they will immediately see me.  My last CT scan was about a month ago.  They have always used CT scans for me and the osteo definitely shows up on them.

 

The pain is on the mandible and the bone is tender to the touch which they explained is a result of the osteo even though I am/have been infection free.  Of course I also have pain on the bone where the original abscess was too.  I see my ID Dr at the end of the week so i will pick his brain. 

 

If i were you I would get supplemental disability insurance while you can.  I was in the process between the first abscess (i was of a month), and the second abscess 2 mos later. Then suddenly i was in the ER, off work, had another abscess and got diagnosed with osteo.  Needless to say I couldnt get the supplemental.  Luckily I had lots of vacation time and some short term disability through work so I made it through the additional 5 months off ok.

 

I will say that this started with a pulled tooth, abscess, emergency surgery, blood transfusions, and tmj from the infection( i couldn't even stick my tongue out), ivs, 2 surgeries removing my massiter muscle from my mandilbe to cure the tmj, the following abscesses with emergency surgeries and more icu, ivs, feeding tubes, draining tubes, teams of Drs figuring out the best plan, and 4 Dr visits a week for months. Still having tmj and ossification of my mandible in two places and on my massiter muscle.

 

 After the first abscess I was constantly saying that my bone ached.  I felt like crap for months (due to having a raging infection) and eventually I started tasting pus (abscess of course).  I did not ever have a fever or a red area around the bone infection.  It looks like I had the other signs of infection for both acute and chronic (ossification/necrosis and abscesses).  I did get head sweats at night and I remained pretty swollen.

 

Like I said I am so lucky because the original surgeons, ID dr, etc that were there for that first admission  to the ER and OR have stayed on my case, took me seriously, brought in tons of other Drs for consult etc.  I am very sure that if I ended up at a lesser hospital I would have died.  No doubt.

 

I just wished somebody would put an article out there out lining what to expect long term.  By the sounds of the people on this sight it sounds like it comes back often if you get run down.  I get afraid that I may be hypersensative and jump at every little twinge (well not twinges since they are nerve related).

 

What is the pain etc that you are having??  Let me know how you do on Thursday.  Lets keep eachother up dated!!!

 

Lisa

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Danielle, Community Member
12/12/10 3:51pm

Hi Lisa,

 

I'm glad that you went back to the surgeon and they take you seriously.  When you say surgeon, what type of surgeon are you referring to?  This may sound like a stupid question but I was just dismissed by a maxillofacial surgeon, even though I can feel a problem in my mouth. Did the same surgeon do all of your surgeries? And what type of CT scan.  Is it of your head or your jaw or what?  I just had one of my head.  The report said no sign of metastatic disease (long story) and I got the CD to look at and my brain looks great...lol (actually that's good - no brain abscess yet), but either they didn't give me the CD with my mouth on it or it didn't look at my mouth even though the radiology people told me it would.

 

About a year ago, I noticed if I didn't floss daily I'd get a headache on the right side.  I'd floss, headache would go away.  So I flossed.  Then started feeling like I had meat stuck between my teeth, back two on the right (#2 & 3) and I was feeling tired.  I was training for a 300 mile bike ride that I have done before.  I couldn't get my speed up.  Had no motivation to ride.  Found myself training alone, because the group I dusted the year before kept dropping me. So I decided I should be responsible and went to the dentist in the end of May. He said I had a cavity above the crown on #3, he cut my gums on the inside and drilled out the cavity and filled it.  Then where he cut began packing food AND I felt like I had steak between my teeth.  I waited for my gums to heal.  We tried several other things.  By the beginning of October, I'd had enough.  I was still packing food, my gums were very sore, I felt horrible and #2 was hurting not 3.  The dentist got frustrated with me, but sent me to an endo to eval 2&3 and gave me antiobiotics.  The endo said there was an abscess between 2&3, but 3 was bad and needed extracted.  Just before the extraction, the right side of my face started swelling.  I started the antibiotics.  I've been on them for the most part since.  I had 3 extracted and was told the abscess wasn't bad because there was no puss, but my symptoms didn't change at all.  Now I have 3 extracted also, because the pressure and pain around it became so severe I was ready to kill myself. I had significant relief after the extraction of 3 and then a few days later extracted a chunk of bone from the sidewall of the socket, that I believe was left in there during the 1st procedure.  But then a few days later symptoms came back.  I know they are not nearly as bad as they would be if the root or nerve of 2 was still in the way.

 

So generally when on antibiotics, I still feel like I have a large chunk of steak stuck between 2&3 up in the gums, on the inside of my teeth. The roof of my mouth on the right stays swollen, the right side of my face stays moderately swollen, the right side of my nose runs frequently (CT of sinuses showed they are fine), my right maxilla or gums in the back feel like they swell when I eat which causes this horrible pressure type pain.  My voice is hoarse, like I have a cold, but I have no chest congestion.  The right side of my throat and my chest feels puffy like it's slightly swollen.  But there is no pus.

 

On Tuesday, my family Md asked me to stop taking antibiotics.  He thought the bone scan would show a more accurate picture of what was going on without the antibiotics.  I think he still didn't believe me completely or was hoping the infection was gone. I stopped Wed.  By Thursday morning, the right side of my face was moderately swollen.  By afternoon, it was obviously swollen all the way up into my eye and forehead.  The pain and swelling in my gums and the roof of my mouth on the right was severe, my TMJ and ear on the right hurt, my cheek bone hurt.  I felt like I had a dowel rod being shoved through the roof of my mouth back by where 2&3 used to be, up beside my nose into my eye.  I thought I was going to throw up.  I called the doctor and him how bad I needed to get before going to the ER.  He put me back on oral antibiotics.  I know I'm getting more resistent though, because they didn't work as quickly as before to decreased the symptoms.  My face is still significantly swollen and the pain is really annoying me today. And I think over all it's spread, my left ear and TMJ hurts too.  Plus I ate today which annoys everything.

 

I feel like if I could take a knife and gauge out the area it would relieve the pressure and I would feel so much better (of course I wouldn't and it wouldn't), but I swear there is something up in there that still that needs removed and antibiotics are not going to fix the infection until either the abscess or bone fragment or whatever is in there is gone, but no imaging that I have had done yet adequately shows the roof of my mouth and teeth. 

 

I'm having a "rabid day" (that's what I call it).  I feel like a dog with rabbies.  Isn't it possible that it is a nasty abscess that just isn't draining?  (pls say yes)

 

I hope your week goes well and they figure out what's going on. I'll let you know what happens with the bone scan.  Please let me know what you think of my symptoms.  I'd rather not have OM thank you very much, but I don't know what else it could be than OM or a tumor, but I'm still hanging onto it being an abscess that just needs surgically drained :).

 

My prayers,

Danielle

.

 

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Danielle, Community Member
12/17/10 10:21pm

Hi Lisa,

 

How did your week go?

 

I got the results from the 3 phase bone scan "worrisome potentially for osteomyelitis".  If he would have actually listened to my history and known that my face was swelling before the extractions, he might have been more definative!

 

My follow up appt with my family MD is not until Tues.  I feel terrible. I have a busy day at work tomorrow then I'm going to the ER.  I don't think I can wait until Tues, just to be sent for another test or to another dr. My jaw hurts, face is still swollen, my voice is raspy, I have a nasty, dry cough, all of my joints in my arms are hurting. My head hurts, my neck is stiff and it's working it's way down my back. I'm nauseous and have no appetite. I think I'm becoming septic despite being on oral antibiotics.  I would go to the ER now if I didn't think my office would implode tomorrow (long story) without me.  I only work until 2 and then I'm going and taking all of my CT reports and CDs.  I so hope they listen.

 

Let me know how you are.

 

Danielle

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Danielle, Community Member
1/16/11 10:59am

Hey Lisa,

 

How are you doing? 

 

Danielle

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lili, Community Member
1/21/11 4:53pm

Sweetie, I am so sorry I havent got back to you. Between christmas and going back to work full time I have been crazy busy.  Your history sounds the same as mine.  The oral surgeon that removed my back molar had done xrays but it didnt show any infection because the infection/abscess was on my jaw bone.  It also didnt show on original cat scans because they werent looking in the right area.  Luckily the hospital admitted me the second time I went back.  I then got a new maxiofacial surgeon, and a neck and head surgeon. They have done all my surgies after getting the tooth pulled.  They did a surgery on the abscess.  They didnt think of osteomyelitis then.  I had severe lock jaw and had surgery to correct it.  I then developed more abscess (a sign of osteomyelitis) and had neck surgeries to drain the abscesses (more stays in the icu)  after my last surgery the ct scan showed that i had osteomyelitis in the jaw.  They radiologist caught it while looking at my ct scan of my entire head, jaw and neck. He then relooked at my  ct scan from 3 weeks earlier and realized that the osteomyelitis showed up onit too.   I have seen my scans and I can see how easy it would be to miss if you werent specifically were looking for it since there are so many layers to the CT scan.  Mine looked like moths had eaten away at it.

 

I feel so bad that I havent gotten back to you.  So sorry.

Ive been doing about the same on my end.  Pain and swelling in my cheek but my body feels good and I have decent energy.  I am still going to my surgeon and ID doc and Im still on oral antibiotics and other meds for pain and swelling etc.  I am thinking that what I am feeling is just part of having osteo, I can deal with it (its nothing compared to what i was feeling while the infection was going on) but i just get frustrated.

 

I hope you are doing ok.  What have the new docs said? 

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Danielle, Community Member
1/21/11 7:20pm

Lisa,

 

Thanks for getting back to me. The histories sound very similar. My panoramics look like moths have been at my maxilla on the right.  I'm going to look at my scans again and see. I've had CTs, MRIs and bone scans now, but I'm wondering if the radiologist knows what he's looking for.  The bone scan was good because it lit up the problem area and the reports said worrisome for osteomyelitis.  That finally got some drs attention, but then they discounted the bone scan as invalid since I had a bone sticking (spicule) through my gums scraped down the week before.  But it got their attention and I am finally making progress.  I now have an ID doctor and a neurologist. I'm on Clindamyacin 300mg QID instead of Augmenten. I saw an oral surgeon (Dr Berger) in San Diego (he specializes in osteomyelitis, on Jan 4 and he gave me a written "soft diagnosis" of osteomyelitis) and recommended an aggressive debridement and biopsy, but also recommended I stay closer to home in FL. So I have been referred to Dr. Marx at the University of Miami.  He is the top guy, so I guess I'm lucky.  I see him Feb 1.

 

I am so frustrated though as I wait. I could have had the surgery this week in San Diego, but I understand it would be better closer to home with follow-up required and potential for multiple surgeries and my business is busy with winter season in FL..but I'm getting worse despite the Clindamyacin.  I have told the docs and they dismiss it of course they are just now believing anythings wrong with the maxilla. 

 

I have constant pain and a swollen feeling in the right upper quadrant including my hard palate and it's heading up to my TMJ, it's usually quite severe. I have another spicule (pointy bone) sticking through my gums rubbing an open sore in the inside of my right cheek. My right cheek bone feels like I've been punched. My right frontal on temporal bone hurt.  My mandible is starting to feel swollen and sore also on the right. The right side of my face is swollen, but apparently only my employees and myself can see it. My right ear hurts and my hearing is decreased. I can barely swallow.  I think I have polyps or something in my upper throat on the right.  When I eat it feels like my palate, jaw and upper throat have glass pieces in them cutting me.  I'm ok with water, jello, peaches and slippery food, but other stuff kills. Even soy milk hurts and smoothies are too acidic.  

 

I've been waking up at night with severe pain on the right upper and lower.  Best part (sarcasm) I discovered I am allergic to Vicodin and Percocet and probably anything with codeine.  I'm avoiding NSAIDS because they are blood thinners.  Tylenol does nothing. Lyrica increases my pain.  Ultram (Tramadol) might help a little, but then I'm too dizzy to drive and working is a problem.  So ambesol is my best friend. I put it on to eat which gives food an great flavor, but it makes it so I can eat.  Then again after I eat and about every 30 min.  Generally I have a very high pain tolerance..but I have never had pain like this.  It's so penetrating and unrelenting. And then a patient of mine said "I know I've had tooth pain before"..I wanted to smack her..instead I said "but did it hurt for 6 months"

 

Sorry, I was going to make this short..oops. 

 

I am so afraid of the upcoming surgery, I know something has to be done in my mouth, so most likely it will be a aggressive debridement and biopsy.  But I have no idea what to expect.  I really like my teeth and don't want to lose any more.  Right now you can't tell any are missing.  I really like my face.  Could I wake up and discover they have removed half of my teeth, my right maxilla and hard palate?  How informed were you about what they were going to do surgically?  But you said they never did a debridement, right? 

 

Please say something to decrease my anxiety...

 

Danielle

Reply
lili, Community Member
1/26/11 3:00pm

Hey Danielle,

 

What a great rant.  Good for you.

 

I would have to say you have the same pain and swelling that I had/have.  My swelling was huge but that was due to the abscesses I think.  Now my swelling is something that I feel but is not noticable.  My pain was radiating up through my teeth and in my bones and my muscle.  They put me on nortriptoline (sp?) for the chronic bone pain and that helps somewhat. I still have pain rising up through my teeth but I can manage it.  I dont think you should worry about your teeth.  It sounds like most dentists pulled teeth because they didnt realize people had osteo.  My maxio doc checks my teeth every appointment because thats where the pain is and my teeth are fine.  I know its in the bone below the teeth and not my actual teeth. 

 

Try alleve, it may help a little bit.  The neurologist told me that Alleve is the best otc drug for bone pain.  I know what you mean about your ear getting affected, mine does too and I think that is due to the masseter muscle being tight and scarred and swollen.  Once they get this under control for you the pain will lessen and the docs willl figure out what type of pain they need to control.  But i know right now the pain is unbearable.  I cried for the week leading up to my first surgery.  I dont know if i had the osteo then or not but i know that pain was off the charts.  I know after that surgery (when my whole face was no longer in pain) that I was constantly feeling an ache in my bone. 

 

The docs went through every thing with me on all my surgeries.  They told me what to expect if things went well and if they didnt.  They never spoke of removing teeth.  Mainly they discussed the possibilty of a traycheotomy (sp?).  I have no idea what they do with the abridement but it sounds like you now have knowledgable docs at your side and they know what they are doing. It should go great.  Trust me I feel so much better than I did even three months ago let alone 8 months ago.  I still have stuff going on but it is  managable.  I was so low and in so much pain before, so malnourished and weak that now I embrace life like I never have before.

 

You will come out of this a new person and you will surprise yourself at how better you feel.  Really, how long were either of us caring around an infection that we didnt know we had.  It must have taken ages for it to get in the mandible and do the damage it did.  You have probably been getting run down for a while and didnt even realize it.  Its my understanding that osteo can flare up again, usually, if you if you get rundown so dont push yourself too hard.

 

I hope I'm helping.  Feel free to vent all that you want okay.

 

 

Reply
lili, Community Member
2/ 5/11 10:56pm

Hey Danielle,

 

I've been thinking of you and I have been wondering how you are doing?  I hope that you are doing better. 

I think i am doing okay.  i have a hard lump where my gums and cheek join.  I taste some pus when I push on it and of course it is tender and is the same area where my bone has been aching lately.  i went to my ID doc and then got sent to my surgeon who asperated it and tried to milk it but couldnt see any pus.  So we are waiting to see what comes of it.  I am a bit anxious about it really but I am hoping it is nothing mqjor.  My blood work came back normal but it has come back normal before when I have had an abscess so we will see.  I think sometimes I use this site like a journal, but one that can be shared by others that "get it".  I really hope you are doing better.

 

Lisa

Reply
Danielle, Community Member
2/ 6/11 5:45pm

Hey Lisa,

 

Let me know how that turns out.  Don't push on things that look like abscesses though..OMG, I did that where I have had 2 teeth extracted and the outside sidewalls of the sockets caved in and now, my face is doing weird things. It restructuring, it looks like the right side is deteriorating.  My face has become flat on the right, but its swollen, but you can't tell because the left side is full and normal ..it's weird and I like my face. 

 

I started my own blog at http:myosteomyelitisofthejaw.blogspot.com  so my relatives, clients and rotary club members could keep up with me. 

 

I don't know how I am.   

 

I went to the doc in Miami..complete idiot. He reviewed my MRIs etc and 1.5 pages of my medical history.  I have 70 pages of notes that were very well organized.  He saw that his friend on this coast said I had neuralgia way back in Oct before any tests were done..so I have neuralgia.  I asked why I get sick when I go off antibiotics and my face swells.  He said "why do you go off antibiotics"? I told him I saw a neurologist last week that said neuralgia couldn't be determined until I have the debridement and biopsy.  He didn't know what to say and walked out of the room. 

 

So the ID doc took me off the antibiotics for 2 weeks. I saw a spirtual healer on Thurs which helped some with pain, but now I'm 6 days off so my face on the right is swelling, but it's hard to see because of the deterioration of the bones or whatever..., I'm beginning to get dizzy, my right ear is starting to hurt, my jaws starting to hurt, my throat feels like there is a lump in it etc, etc etc... I'm going to another spirtual healing classes tonight..it can't hurt..

 

I see the ID doc on Valentine's Day... I predict he will try to send me back to Miami....not only was he a jerk..his office was filthy.  I plan to go back to San Diego.  And highly recommend Dr. Berger to any lost person out there that is willing to travel..

 

Keep in touch my dear, my prayers are with you,

Danielle 

Reply
lili, Community Member
2/ 7/11 6:19pm

Oh Sweetie,

I hate that you and so many others get the run around.  I can't  imagine how frustrating it must be.  I am speechless.  If you come back out here will you still be able to manage your business? Has anyone given you meds to manage the pain?  I say make the appt in San Diego immediately if you are not recieving any treatment out east.  Your health is too important, and as we all know, not recieving treatment and getting it under control can destroy the rest of your life too.  I have no idea if I have the beginning of an abscess or maybe some dead bone broke off.  I am keeping the docs advised as to any changes or lack of changes. Its no better and no worse then it was on Friday so my anxiety has diminished thankfully.  Please let me know what the docs say.  If you need to vent, have a pity party (well deserved) or need a shoulder, let me know.  I have got back into the habit of checking the site more regularly know.

 

Keep strong and be aggressive,

 

lisa

Reply
Danielle, Community Member
2/ 7/11 10:02pm

Lisa,

 

Thank you for starting to check again.  I'm so scared and need someone. What if this infection spreads to my brain?

 

Are you in California?

 

My insurance is an HMO, so Dr. Berger's office is getting authorization right now for the surgery.  It takes about 2 weeks to get the authorization.  I'm going to call tomorrow and get a date set.  I need to talk to my ID doctor first. I'm going to call his office tomorrow and see if I can stop by. 

 

I'm 7 days off antibiotics and between 3-4 pm today the swelling in my face doubled and it's still gradually increasing.  By tomorrow I'll look like an oompa loompa..lol.  I went to a meeting at 5 and a friend of mine said from acrossed the room, "I can see the swelling in your face now".  If I wait another week to follow up with him I will be really sick.  I can feel the whole right side of my head, neck and throat is swollen.  The roof of my mouth and jaw is starting to hurt more again, as is my ear, and vertigo is also starting.  So since no one on this coast believes anything is wrong with me, the pain and my allergies to the meds haven't even been addressed.  Trust me I am aggressive...problem I've been too aggressive, which really is out of character for me.  Plus I'm too smart and have a medical background so I can quote text books to them..they don't like that.

 

My business will survive.  I may upset some people by not being able to see them, but there are 3 other facilities close by. We have been voted best in the area for the last 5 years though..so we are quite popular and this is the snowbird season.  Not good timing, but I am more important and I'm not tolerating the antibiotics either, so just sticking with antibiotics for a while isn't an option either.

 

I have a part-time PT, 2 part-time massage therapists and a office assistant.  I see a as many patient's in a week as all of them combined.  I have about 100 appts this week of which 40-50 are mine.. I need to find someone else quick. Another PT would really help, even just one to cover for 8 weeks.

 

I just need to know from the ID doctor what his plan is.  Especially since he just told me that in time and with no other treatment it was going to just go away.  I need my throat checked too, with a laryngoscope.  It hurts all the way down the right side and I have trouble swallowing.

 

I know I am close to a resolution..but if I have to wait another week to see the ID doc..it's going to be a tough week. 

 

So with you...is it not showing up in the x-rays?  I'm so glad you have doctors that work with you and believe you.  It makes a world of difference!

 

Thank you!

Danielle

Reply
lili, Community Member
2/ 8/11 12:13am

Hey Danielle,

 

I am out in California about 1 1/2 hours away from SD.  If you need support with the surgery you better let me know.  I checked out your blog and think it is a brilliant idea to document your experiences.  Like I said I tend to use this site as a journal/commiserating exercise.  I am sitting on my couch nursing my aching jaw as I am typing you after another night of trying to get answers from the internet.  Its scary that I pretty much understand medical journals/articles about this disease.

 

I am really worried about you being off antibiotics right now.  I had so many issues with abscess that I am a bit freaked out for you but I might be overreacting, who knows.  If you taste any pus (sour tasting and if you rinse with hydrogen peroxide it will foam) please go in to the hospital or start taking the antibiotics again. 

 

I havent had any of my doctors worry about it spreading to the brain and I havent come across anything online that I remember.  Like I said, I worry about it getting in the blood stream and causing sepsis.  I know how scary this is because there is no permanent set of rules for this disease and it is so difficult to get all the questions answered because it is so rare.  I think thats why I spend hours on line at times so I have some idea what is going on.  Of course i still have no idea what is going right now LOL. They haven't done any xrays or scans this time.  But I am going to e-mail them every few days to let them know if there is a change.  In the meantime I will continue to choke down my antibiotics and continue on as we all do.  Its crazy how we adapt and continue to go about our daily routines while battling with this.  I always wonder how bad the pain really would be if I wasnt so used to living with pain all the time.  Hopefully there will be a day when we will no longer need to wonder.  I am going to see if I can contact you through your blog so I can give you my e-mail and phone number.  Do you have any family or support out here in socal?

 

I'm sending a big hug.

Lisa

Reply
Jaw1, Community Member
11/ 7/11 3:50pm

Did you see any docs in North Carolina?

Thanks!Smile

 

 

Reply
Natalia, Community Member
12/ 7/10 3:31am

Hi my name is Natalia and I'm new to the site. I'm 22 years old and was diagnosed with chronic osteomyelitis of the lower jaw about a year ago after MANY hospital visits where I was told it's a tooth ache, my face was swollen from my eye down to my chest & I was in intense pain 24/7. Because I'm young the doctors thought I was drug seeking & after 5 visits they FINALLY took an xray & saw that the infection ate through my jaw & I was walking around with a broken jaw for about 2 months! I finally started getting treatment after that at Harborview in WA. I had a PICC line in for 3 months (they took it out because I got a blood clot in my arm), my jaw wired shut for 3 months which resulted in me losing 30 lbs taking me down to an extremely unhealthy 100lbs, oral antibiotics the entire time, and 2 surgeries so far and many MANY hospital visits sometimes lasting a couple weeks. I'm now getting hyperbaric oxygen treatments 2 times a day- 2 hours each treatment. It doesn's seem to be helping. This is all really wearing me down. It's so nice to hear that there are people that understand what I'm going through because I've felt like I was alone this whole time.

I'm in intense pain all day everyday and I guess what I'm wondering is if anyone knows of any medications that help? I've tired morphine, all over the counter pain relievers, nerve blockers.... I feel like nothing even puts a dent in the pain! I'm often stuck in bed all day long because the pain is unbareable. I know there must be SOMETHING that can help!!

Alos, has anyone else had hyperbaric treatments? Did they help? Because so far they don't seem to be working & the surgeon said my only option if this doesn't work after 60 HBO treatments is to have a bone from my leg used to replace my jaw which would mean another 3 month stay in the hospital :-( Just hoping it's helped others so I can have a little encouragement to keep on going & not burn out & give up!

 

Reply
lili, Community Member
12/ 9/10 8:02pm

Hey Natalia,

 

You must be miserable.  The dentist that pulled my tooth thought I was drug seeking too even though the side of my face was so swollen that i got a black eye and almost died due to the abscess I had on my chin.  My out patient meds are norco.  I tried morphine and couldnt stand it. Dilauded was wonderful while I was in the hospital (0 pain!!!) however the pill form really did nothing so I just used it for breakthrough pain with the norco.  If you are unable to take pills then try to get loratab (liquid vicodin).  They put me on nortriptoline for my chronic bone pain which worked after 7 weeks but 2 weeks later it stopped working.  I did not find any over the counter meds that worked. The norco are not that effective anymore.  I was worried about addiction but found that I had no desire to take them for the two weeks that the pain subsided. Some doctors are too afraid of addiction.  i know my initial pain was so bad that I would have played russian roulette for a pain pill.  It was excrutiating.  Unfortunately the pain will persist but will probably get more managable for you after time if you are like me and many of the other people posting on this page.

 

I also went from 130 pounds down to 100 pounds due to my being on a feeding tube for 2 an 1/2 months. I am so sorry you are going through this.  I know when I was at my worst it was a complete nightmare. 5 surgeries, 3 times in ICU, etc. 

 

I did not recieve hyparbaric treatments even though my docs did consider it.  What antibiotics are you on?  My infection was strepp based and the piperacillin-taz (zocyn) worked even though it did kick my but in the process. I am happy to say that even though this started in late march, diagnosis in July, that I have returned to work part time with the expectation to go back to work full time soon.  I am not convinced that the osteo is cured because I can tell something is wrong but I can say that I feel like a functioning human being.  I really hope you get there too.   I went from a malnourished, pain ridden, sick sick person that couldnt begin to walk up a flight of stairs to a happy, thankful, normal looking (even though my jaw on the right side is a bit disformed) person that is sooo appreciative that I am better.

 

My heart goes out to you.  I know how important it is to vent. So let it rip. 

Reply
Danielle, Community Member
12/ 9/10 9:35pm

Don't give up! 

 

I don't know if this will help, but I was talking to a lady this weekend who works for Goodwill and she had just met a homeless man that had OM of the jaw.  He had just gotten out of the hospital from actually having the surgery done.  She said that he looked good. He told her what he had just be through and she was like "really, they did what", because he looked so good. He had no visable scarring and he was feeling a lot better.  His surgery used a rib, titanum and part of his hip bone, but I'm sure it depends on the doctor.  I don't know how long his hospital stay was. 

 

For me this was positive, because I don't definatively know what is wrong with me a this point.  It is either OM or a tumor and my CT of my sinuses and head didn't show any tumors, so I'm thinking OM.  Every study I have read, says the only way to truly get rid of it is to remove the infected bones.  I was imaging scarring and a deformed face and thinking that cutting my head off might be a better option.  Having chronic infection in your body will cause all sorts of horrible problems, so as bad as it seems, the surgery is still better than having that sickness in your body even at low levels. 

 

You are young and do have a long and healthy life a head of you.  You just have to believe, as all of us do that "this too shall pass".  You won't be the same on the other side, but you need to still be here ..to support the rest of us :)

 

I'm just starting..I need you

 

Danielle

Reply
Sharon, Community Member
12/12/10 2:34pm

Greetings. This is my first post. After a year and a half of severe dental problems, root canals, dental extractions, etc., it has just been confirmed that I have osteomyelitis of the mandible, likely resulting from radiation treatments a decade ago for head & neck cancer.   I am still going through hyperbaric oxygen therapy (let's hope it helps, because it has NOT been fun), have been on anti-biotics for months, and am expecting the next round of medical torture with IV anti-biotics after the holidays.  Has anyone been through this?  The more I read and the more doctors I talk with, the scarier this is.   Thanks and my best to anyone else who is/has experienced all of this.  Sharon  

Reply
twins, Community Member
12/29/10 5:29am

Hello all! we are identical twins from finland kemi and we also have chronic osteomyelitis.I have on the right side of my down jaw and my sister have on her  left down jaw.we was 12 years old when we got it and now we are 31.I have been in  4 operations and my sister had hers second operations about 2 weeks ago.Here in finland we have good doctors and we are very thanksfull about that!Smile

We hope that you all understad our english writingSmile

We want to give our blessing to you all.

 

Kaisa & Hanna

 

 

Reply
Danielle, Community Member
1/16/11 10:26am

Can you tell me about the operations?  I am supposed to go for my 1st "agressive surgical debridement and biopsy" in about a month.  I am terrified.  I don't know what to expect.  It is my upper jaw and lower on the right.  Can you tell me what it was like immediately after the surgery?  Were you in terrible pain?  What did the doctors do?

 

Danielle

Reply
Diane Pickard, Community Member
1/ 6/11 10:47pm

I am begging for help.  I was diagnosed by a team of dentists of different specialties after waiting all summer on oral antibiotic while they reviewed all of my history, symptoms, and results of my cone beam scan which showed alveolar bone loss ONLY IN THE AREA OF SEVERE PAIN where I had a tooth extracted and complications occurred after that.   There is now an implant in that area which is causing HORRIBLE PAIN and purulent drainage when I am not on antibiotics.   When I had the cone beam performed that showed the bone loss in the mandible, I had a recent root canal performed.  The dentists KNEW I WAS TAKING oral antibiotics at the time, but proceeded with the scan anyway.   It showed the bone loss, but no osteomyelitis.  Well, they put me on Doxycycline anyway to see if IT would improve my symptoms.  IT OBLITITERATED my symptoms.  They now want me on that medication for 6 more months orally, but my rheumatologist is not satisfied with this plan of care.  I need to start chemotherpy for my lupus, and  can't with the slow rate this is taking to get it resolved.  MY doctors feel that my dentists should step up to the plate and vise versa.  The problem:  I have NOTHING IN WRITING THAT SAYS I  HAVE OSTEOMYELITIS, but I am being treated for it.  I am going to die if someone doesn't help me.  Please help me.

Reply
Smiley, Community Member
1/ 9/11 5:28pm

Where do you live?

Reply
Danielle, Community Member
1/16/11 10:20am

I know the feeling..you have to keep persisting.  You need to find a good infectious disease doctor if you don't have one and then look for a university close to you with dental school.  The ID doctor should be able to refer you to someone that specializes in osteomyelitis and unusual dental problems. 

 

The dentist or oral surgeon should be able to refer you to what ever university they normally send people to.  They know people, they just aren't sharing that info with you.  But you need an infectious disease doctor, they are the main person in a team.  Ask your rheumatologist who they would go to and get him to refer you to the ID doctor.  It should get the ball rolling in a positive direction.

 

Good luck and keep in touch,

 

Danielle

Reply
fatface, Community Member
1/20/11 5:06pm

hello all

 

i am so glad to find this site i will give you a short history

 

june 2006 severe tooth pain xrays pulp tests bite splint pain worsened with each step sent to oral surgen xrays cat scan said it was tmj

2007-2008 saw a bite expert every two weeks

asked my md for help she said it was a dental problem

during this time i tried osteopath,chiropractor,massage therapist,acupressure,chinese traditional practitioner,

naturopathic physician.used tylenol and ibuprofen each at max

and sleeping pills (clonazepam etc etc)

2009 specialist in orthodontics forecast two years in braces then break my jaw

folowed by two more years in braces(and a bag of money)

2010 got a new dr. he started scans xrays and trying all kinds of meds for pain control sent me to specialists he has worked hard to find the source as well to

control the debilating pain and swelling

today it looks like chronic osteomyelitis see a new ent jan 28th

my pain and swelling sounds like all of you i feel for you all.

 

Reply
Danielle, Community Member
1/21/11 7:27pm

Good luck and let us know how it goes.  See if the ENT will refer you to an ID doctor.  Find out who he would go to if he had a problem like yours.  That's how I just found my new ID doc.

 

Danielle

Reply
fatface, Community Member
1/31/11 9:57pm

hello

 

The wait starts again my ent is sending me to an id doctor and a dental surgeon i wish there was a way to keep this under my med plan and not dental i will keep you posted

thanks

 

Tom

Reply
Danielle, Community Member
2/ 6/11 4:29pm

Tom,

 

I just saw an oral surgeon (the 7th) and have been trying to figure out the same thing, because some bill my medical and some bill me. So I asked when I was at the University of Miami's dental office. They said if it had anything to do with a tooth then it is dental.  If it is your jaw bone, osteomyelitis, neuralgia those are medical conditions. They should be billing your medical.  It is not a dental issue. 

 

However, after waiting a month to go to Miami. I am heading from S. Florida to a doctor in San Diego.  Dr. Joel Berger.  I saw him in the beginning of Jan and he is the only one of 7 oral/maxillofacial surgeons that I have seen that has really taken the time to review my history and really evaluated me.  All the docs in S. Fl belong to the same good ole boys club.  If one thinks you have the wrong diagnosis, they all do...they are all buds.  Lesson learned..never tell a new doctor the names of your previous doctors..they don't need to know.  I hope to go back to San Diego in 2-3 weeks and have the surgical debridement and biopsy that I really need, but I still need the cooperation of the ID doctor here.  Not sure if I'm going to get it..he also seems to be sort of in the club...

 

Dr. Berger is also an MD.  So billing medical insurance should never be an issue.  The distance just creates a whole lot of other issues, but they are well worth it to finally get the help we need.

 

Danielle

Reply
GmaGpa1968, Community Member
1/27/11 9:49pm

I had it, and it is very painful. To get rid of it totally, you have to be put on a IV drip with a strong antibiotic for about 6 weeks. They can put in a picc line, and then you can do this at home, with a visiting nurse coming to your home twice a week, to take blood work, and clean the dressing. It is a long drawn out process.  Good luck. GmaGpa1968

Reply
Paul M, Community Member
2/ 5/11 10:06pm

 

Hello to all of those out there,

My name is Paul and I have been suffering with chronic osteomyelitis of the lower mandible for 18yrs. So much time has passed and I have never met or known of anyone with this infection. I was wondering if anyone has tried any alternative treatments e.g., herbs, juices, tonics, eating only raw fruits and vegetables, etc. Also I’m without insurance and have been without any treatment for years now and I’m at my wits end. The pain and swelling is constant, only subsiding for brief periods of time leaving me out of ideas to deal with my current situation that goes far beyond osteomyelitis. I don't know who or where to turn for help, in reading a lot of your testimonials it seems that most of you have strong family support, but mine from the start have not shown much concern when I had insurance and even less now that I don't. I don't want to make them seem completely uncaring, because if I were in their positions I haven't know what to do either. I guess what I’m asking, does anyone else know?  

 

Reply
lili, Community Member
2/ 5/11 11:06pm

Hey Paul,

 

I have no ideas about alternative medicine or treatments but I am glad you have found this site.  I am convinced it is by far the best source of information for osteomyelitis that there is.  I cant believe you have been going so long with out treatment, my heart goes out to you.  I am lucky I have great insurance and i know i can never leave my work just for that reason alone.  I was wondering if there are any studies/clinical trials being done that you may qualify for.  It may be a pathway to some treatment on some level. 

 

Lisa

Reply
Danielle, Community Member
2/ 6/11 5:14pm

Paul,

 

I am into alternative medicine and am a physical therapist. I don't know how well it will work because the mandible has such poor blood circulation, it would be hard for the nutrients to get in to heal it, but it's worth a shot.

 

I went a spirtual healer this week also and she may be able to help you.  She does phone consultations.  Her name is Debbie and her website is www.centerofeternallight.com.  I was in her office 2 1/2 hours and she charged $70.00.  She did some counseling and reiki and when I left my left ear drained the rest of the day.  I have had little pain since. I'm going to a group session tonight.  You have nothing to lose by calling her.  She's very sweet.

 

Some supplements that could help (of course they will help the rest of your body..lol)  if there is enough live bone still in your mandible and you have enough blood circulation would be ionic silver (not colloidal).  It is a natural antibiotic and antifungal.  You can get it from Glenn Burkett.  I think his site is gburkett.com.  Olive leaf extract and garlic also kill bacteria.  There is a book called "The Yeast Connection", which everyone on here needs, because we are placed on heavy doses of antibiotics.  This book has a list of natural antibiotics in it.  It also explains the damage antibiotics do to our bodies with our balance between good bacteria and yeast.  Something doctors vaguely mention by telling you to eat yogurt.  (Well unless you are going to eat 15 containers a day, it's going to help minimally. Which when you can't chew you might!)  I'd recommend getting this book.  It's on Amazon for about $12.00.  It will give you ideas on what supplements may help you and why. 

 

I have been seeking a proper diagnosis, so I have stopped my some of my normal regimen of supplements because I think they were interfering with getting accurate test results.  They are worth a shot for you.

 

Mine is in my upper jaw going up into my face under my eye, on the right.  I feel swelling behind my eye and up into the parietal lobe of my head.  I can't risk losing all the facial bones on the right side of my face and fortunately have medical insurance right now, so despite the spiritual healer, I am going on with mainstream medicine.  I don't feel that I have time for the universe to decide if it's going to heal me or not.  I do however, feel a lot happier and positive about my life since talking to Debbie.  If it can help me along the way and help me heal afterwards, I will gladly take all the help I can get.  You have been dealing with this for a really long time and aren't in a huge hurry, it may be the answer you are looking for.

 

My heart goes out to you, too,

Danielle

Reply
fatface, Community Member
2/10/11 11:57am

HELLO ALL

 

I WENT TO MY NEW ORAL AND MAXILLOFACIAL SURGEON TODAY HE IS GOING TO DO A BIAOPSY MARCH 24 TH.

 HE DOES NOT EXPECT TO FIND ANYTHING BECAUSE HE SAYS FROM CAT SCAN

AND MY XRAYS IT IS MOST LIKLEY CHRONIC SCLEROSING OSTEOMYLITIS OF THE MANDIBLE HE THINKS MY BEST BET MAY BE HYPERBARIC OXYGEN THERAPY

HAVE ANY OF YOU TRIED THIS TYPE OF TREATMENT?

I LIVE IN CANADA ON VANCOUVER ISLAND SO IT LOOKS LIKE IT WILL BE ON MY

DENTAL PLAN I HOPE THERE IS COVERAGE FOR THIS. I AM STILL WAITING TO HEAR FROM MY ID DOC. FOR AN APPT.HAS ANYONE FOUND ANY HELP WITH THE SWELLING AND TO HELP WITH MOUTH OPENING?

HOPE ALL ARE WELL  TOM.

Reply
Becky, Community Member
2/11/11 8:50pm

Hello everyone, I'm also new here, I was diagnosed with Osteo in aug. of 2010.

had debridement, was on IV therapy for 7 weeks. then I had a flair up in Jan. 2011, stayed in the hospital for 4 days, on IV therapy again for 6 weeks. They

wanted me to have Hyberbaric therapy for 6 weeks, but insurance doesn't pay

for it. Does the HBO therapy help the bones? anyone have a good outcome with

it? thanks for any info you can give to me. Becky

 

Reply
Marie, Community Member
2/15/11 2:55am

Hiya,

 

Re. HBOT. I did 40 dives prior to ever having decortication and debridement done and it was pointless. I guess it depends on the extent of your CSO. My new oral surgeon told me it can do more harm than good as the pressure on the bone is quite extreme in the HBO. I used to go home in tears from the pain after an HBOT session. I cannot recommend it from my own experience.

 

Tom: get a new oral surgeon if yours is already sceptical that the biopsy will show nothing. A proper microbiology should cultivate something. I had several biopsies done incorrectly coming back as negative and then finally someone did a microbiology properly and voila - highly agressive actinomycetes israeli in combination with three other mates. Your oral surgeon sounds like he does not know much about CSO and CDSO and other forms of chronic osteo.

 

My heart goes out to everyone. I spent the last 6 months on IV penicillin G through a subcutaneous port system. Bone scans surprisingly were never the imaging tool of choice in my case. CT scan seems to be the only way for me. Bone scans only kept showing false positives after surgery,....CSO patients have a tendency to show false positives due to slow healing for 9-12 months post-surgery. Healthy bones only 3 months. The CT scan showed the crystals that actinomycetes produced in detail. After two debridements, and 6 months of IV atb it now shows the CSO lesion has doubled. The oral surgeon is stumped though. He firmly believes the bacteria must be dead after administering so much ATB, so it is being blamed on some sort of hyperostosis. I am also pretty fed up with doctors at the moment. When something does not proceed according to a textbook, than it is too complicated and everything is blamed on the patient. I would like to know why the heck my sclerosis has doubled despite treatment!

 

Otherwise, many people write about pain after treatment and continuous, temporal pain etc. Several members have mentioned that they struggled a great deal with TMJ after having their CSO treated. Perhaps those of you describing such pain should consider having their TMJs looked after. TMJ pain often mimics the pain you have from CSO...that deep nagging throbbing ache. It is hard to differentiate between the different sources of pain. Quite often patients also suffer from muscle spasms after debridement etc. The chewing muscles are served a tremendous blow by CSO as well...they undergo scarring and emit pain. So just some other source sof pain to consider while treating your CSO. It took me severla months to get my muscle spasms under control - they were causing a deep throbbing pulsing pain, very much like bone pain.

 

Take care everyone. Perhaps it is not so uplifting to hear from members of the board who have undegone treatment with little relief. But you can learn from the experience.

 

Marie

 

Reply
Becky, Community Member
2/15/11 7:20pm

Marie, Thank-you so much for your information on HBOT.  I feel for everyone having this awful disease, I know I'm not alone, Maybe what I'm feeling is

muscle spasms, I just want to get this under control. Becky

Reply
Becky, Community Member
2/15/11 7:26pm

Marie, Thanks for the info on HBOT. Maybe I'm suffering from muscle spasms,

I just want to get this awful disease in control so I can handle it.

Becky

Reply
Marie, Community Member
2/16/11 2:31am

Dear Becky, and all,

 

My suggestions about pain are simply food for thought. My oral surgeon is also a facial pain specialist so she often challenges my complaints about pain by suggesting to try and perceive the pain from a different aspect. Having had CSO for so long, or any of you who have had CO for years, are probably also battling to a certain extent with "fixed" nerve pain, or other sources of pain such as TMJ and muscles due to the extensive damage of CO. I look at the challenge this way - I have to prove to myself and my oral surgeon that the source of pain is still, or no longer, the infected or "cured" bone. I am personally not convinced that my infection is under control, so I have been working hard on getting my brain to learn to identify where the pain is coming from. Boy....it is a lot harder than it sounds. Taking a muscle relaxant during flare ups was what helped me to distinguish the pain coming from muscle spasms and muscle scarring. Once I had that identified, I was able to take muscle relaxants during following flare-ups to find that muscles had nothing to do with it anymore. TMJ pain radiating into the mandible and maxilla is sth I have been battling with from the beginning and am able to identify. I am now trying to work on identifying the pain that I still have 8 months post-surgery. I firmly believe that it is pain coming from the nerve which has become compressed again due to the the fact that the sclerotic lesion has doubled and the nerve that was deliberated from the channel it lies in during debridement (I was told by my OS after surgery that the nerve was not at risk of becoming compressed again, that the bone has no chance of enveloping it again) is now surrounded by bone "again". The question is whether the hyperostosis is caused by CSO or some  underlying metabolic bone problem. I have seen countless bone specialists who found nothing. So that is why I believe that it is perhaps CSO spreading. But doctors are odd sorts - I spent 5 years getting a diagnosis, trying to prove them all wrong when they told me it was all in my head. I tried various antidepressants to prove to them the pain was not in my head, that no matter how many AD and pain killers I took, the pain was still there. Now, even though I have a diagnosis, I feel like I have to go through the same process of proving to them that perhaps the "protocol" treatment plan has not worked as expected. It is very frustrating.

I now have a couple months to sort this all out, before I accept the offered "next" step. My OS has offered, as the best solution, to sever the nerve, since it keeps emitting signals of pain. It's a conservative step that I most probably will accept if a miracle does not happen by May. During the open surgery, my OS would have another chance to do a proper microbiology and histology of the affected bone. And, I would have a chance to find out whether or not the spreading sclerosis is due to the actinomycetes being faster than the ATB, or a bone disease. She and her lab team have developed a very reliable method for successful microbiolgy culturing. So, I can be assured no more false negatives will come up. Based on results, I will be able to sleep better at night knowing what is really going on, whether treatment failed or not, if it failed, then I can accept and come to terms with resection of the mandible as the final option of choice.

Anyway, I got carried away. I simply wanted to say, that we all need to explore the "other" possible sources of pain, other related areas that have endured scarring and inflammation etc. directly from our OS before we throw the towels in or end up paying quacks out of desperation for a cure, when some the offered alternatives are really just business. The best thing we can all do in the meantime is boost our immune systems and drink a lot. Keep flushing the body.

Somebody mentioned they have not read about CSO spreading to the brain. It can and I am a living example of it not spreading to the brain but the skull. I have a CSO lesion on the skull and possibly the source of it is my upper second molar which was also extracted as a result and left behind a sclerotic lesion. This is a very DANGEROUS condition....doctors undervalue how sick a bone infection can make you. I had days I thought I would never see the light of the next one and quite possible from chronic episodes of mini sepsis. Nobody believed me, but hey, I survived.... I always drank quality herbal and green teas to keep my system "clean" and tried to eat well. That was the only thing I could do for myself while in pursuit of a finding a doctor who would believe I have a bone infection and help me.

Never give up. I believe there is always a solution. It is a matter of finding an OS who believes you and cooperates, and who is experienced. However, sometimes as the patient you also have to try out the hard ways of dealing with pain, the less rewarding ones as they take a long time to kick in or demand a lot of work, or sometimes accept what most of us do not like to hear that some of the remaining  pain really is "fixed" in our heads.

Take care all....don't give up.

PS...if you read all of the previous posts on HBOT, I believe nobody has posted any positive feedback on it.

Reply
Becky, Community Member
2/16/11 11:23am

Marie, How long have had chronic osteo? Mine is in my lower jaw, I had alot of

problems with my ear, It was like pressure pushing on it, very painful. I 'm already sick of the runaround. I never was sick until I got osteo. Thanks for

all your info on this horrible diease, I guess no one can really understands the

pain unless you have been there. Becky

Reply
Becky, Community Member
2/19/11 5:07pm

Paul M, I have heard good things about raw unfiltered apple cider vinegar, it can

be purchased at most health stores, it helps bring back your PH balance to your

body, when we sick certain bacteria strains can make our bodies more Acidic. when that happens it can lower oxygen levels, making you very tired & fatigued.

taking 1 tsp. of vinegar with a large glass of water daily, helps Ph levels. You can try it.. just thought I would pass it on, it only cost me $ 6.54 for 32 oz. bottle, compaired to the thousands I have spent on doctors & dentists. Take care... Becky

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jaw infected, Community Member
2/16/11 9:36pm

I  have osteomyelitis on the right side of my jaw at the site of a root canal gone bad....periodically it gets really had...and my face was visibly swollen recently. I am opposed to antibiotics....I have used meditation, essential oils, infrared heat, etc....recently a friend gave me an alkalizing product called pHenomenal (I am not associated with the company, nor do I sell it)...his daughter had MRSA and she was cured of the infection with this....after 3 days, the swelling in my jaw (and the pain and soreness) was less than a third of what it was...AMAZING. The science is interesting too! (binding an extra hydrogen molecule?) Wishing you an infection free life!

Reply
Becky, Community Member
2/16/11 9:51pm

Hello All, I'm always interested in different ways with dealing with Otseo. Where

do you purchase pHenomenal? Thanks for the info. Becky

Reply
Marie, Community Member
2/17/11 11:32am

Dear all,

I do not mean to come across as "bashing" alternative medicine. I myself and quite confident in certain forms and preparations and use some myself. But I feel that it is important to point out to other members of the board, from my own experience, that alternative medicine will NOT CURE your CSO. Unfortunately or fortunately, conventional medicine is the way to go for CSO. Alternative medicine is only a SUPPORTIVE means of treatment, it can help boost your immune system but it will not remove the bacteria or "intruding" pathogen/agent from your infected bone. Only surgery and appropriate legitimate meds can do that. You are wasting your money thinking alternative med will help you out of your CSO. It won't.

Just my humble opinion and a logical one derived from my experience.

Regards,

Marie

Reply
Becky, Community Member
2/17/11 2:18pm

Marie, I totally understand about alternative meds & such, my immune system is

surely in need of a pick me up. I'm now taking calicium, magnesium, vitamin D, 600 mg. of DHA Omega 3's and a good multi vitamin. I have changed my eating habits, I eat alot of protein now, I have quit all of the negative things. I really

I'm grateful to everyone on this board for their insite on Otseo, CSO, TMJ. I just

never have heard of this disease before, until I found out I had it.

Becky

Reply
jaw infected, Community Member
2/17/11 4:41pm

 I'm not sure where to purchase it....a friend gave it to me...I think I mentioned his daughter used it to clear up her MRSA infection with btw Marie--conventional medicine couldn't help at all. This stuff does have scientific proof, I just don't know the science (my friend who gave it to me did tons of reading and researching after all those courses of antiobiotics couldn't eradicate his girls infection)

...the bottle says it is manufactures for Ancer LLC 1135 Terminal Way #209 Reno NV 89502  there is no website on the bottle, and when I google searched pHenomenal enriched water concentrate I came up with a few links on MRSA sites, and some natural health care site....and i found link below as well--i have no knowledge of them--I just google searched it!....not sure why they make it so difficult to find them?....literally there is no website on the label (although i have no idea if this bottle came in a box that might have info on it?)

 

 

Good luck on your health quest...I'm certainly keeping my fingers crossed that it will continue to improve my jaw (I've been drinking it faithfully for a week, and I eat a healthy diet and don't drink sodas or coffee or oj etc) and while it's SIGNIFICANTLY better....it is NOT gone, nor is it cured. But this level of improvement is (to me) worth sharing in hopes someone else can get relief from the pain and inflammation!

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Becky, Community Member
2/17/11 7:51pm

Jaw infection, Thanks for the info. my IV comes out Monday, I don't really feel

any better, than I did when I went into the hospital, I had a ent tell me that if

I didn't get into a OS asap, It would be to late. here I'm sitting on the bed thinking I'm gonna die or what, The lady in the bed next heard it too, she couldn't believe it, I think they just brush us off. They thought I had Mrsa too.

but it came back I didn't. Also thought I mumps, Ludwig's Angina to name a few.

I just retired last June from work, and I really haven't been able to enjoy it. But

thanks for any information on this, You know I had a referral from hospital to see

a certain OS and was told that he didn't take my insurance, he is a particpating

OS in my insurance, such a liar, not a good one either. Take care

Becky 

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paingoaway, Community Member
3/27/11 10:46am

Help!! Had a deep cavity filled 2 weeks ago which created so much pain and agony that 5 days later i was given an emergency root canal (bottom left molar). they could only do half the root canal because my tooth was so inflamed. pain was manageable at this point. went back to endodentist 3 days later to have it completed and the next day started my nightmare. excruciating pain, waves of intense pain like i didnt know were possible. i tried to be strong but it was debilliatating. called the endo multiple times and they just kept telling me it was normal to feel discomfort. went back 3 days later and they prescribed an anitbiotic and vicodin. 2 days later i had gotten almost no sleep from the pain and nothing was helping. went back to endo who took out the root canal filling and put in a sedative. once the novocaine wore off i thought i was going to die. after 2 vicodin my pain calmed down and stayed manageable for a while but the next morning (today) i was woken up by pain. i dont know what to do. i feel like everyone thinks im overreacting. they did mention to me that my wisdom tooth is pushing on the molar so maybe that is why the pain is so crazy but its just too much pain to handle. any idea if this sounds like what you guys are suffering with? im ready to give up because this amount of pain in a human being is hard to live with. any help would be appreciated :)

Reply
katie, Community Member
4/ 2/11 9:41am

Hi Everyone

 

Im from South Africa and would like to know if any of you have any suggestions - 

my mother has osteomyelitis of the lower jaw - she had some teeth removed and the jaw scraped, about 5 times. Went through the hyperbaric chambers scenario as well-it was pointless.  Eventually 90% of the jaw was totally removed (joints remain-no lower teeth obviously) and a metal plate put in.  She then had a bone graft  last week Thursday- bone taken from her hip and put around the plate.  This was a 6hr operation with the cutting done outside. On Tues, she went into surgery again as the maxillo facial surgeon picked up a small hole inside her mouth.  When he opened up, the poison just poured out.  He had to remove the entire graft.  So the 6 hr operation was for nothing.  She has been on antibiotics for a year now so I presume she has built up a resistance to them.  The maxillofacial surgeon has said she cant do anything for a year now as her body needs to get rid of this superbug and antibiotics dont help.  So no point doing another bone graft as its going to become infected again.

 

She is 63 now and fed up of surgery.  Obviously she cant have dentures as theres no bone to support them.    Had this bone graft worked, she would have gotten implants.

 

Do any of you know if theres any other way to get teeth?

 

 

Reply
Dont give up, Community Member
4/17/11 3:49am

I am so sorry to read the above messages. I too have been dealing with chronic osteomylitis and have suffered terribly for the last 5 years after 2 infected root canlled teeth were extracted and broke bone. Then sinus surgery broke more bones. I had pain in my right jaw area for at least 3-4 years before the teeth were extracted. I thought it was my jaw, never did I think it was 2 teeth that had been prviously root canalled. Thank God my best friend referred me to a dentist out of state who found the teeth. However after the surgeries there have been numerous infections. I am still here by the grace of God and many prayers. The many different doctors have put me on 20 rounds of antibiotics during this time to very little avail. It is too bad that not one of them mentioned to be sure to take a good probiotic 2 hours apart(like VSL#3 and others), so that led to many, many vitamin, mineral and amino acid deficiencies. You feel like you are slowly dying. It is terrible...again more prayer.

 

Since it looks like the antibiotics haven't worked and we dont know what else to do, my husband and I have been looking into essential oils. There are university studies from all over the world that show different natural things to fight strong infections http://tnymed.com/?p=242. Some I have found are...Tea tree oil, cinnamon oil, bee propolis, eucalyptus oil, peppermint oil, lavender oil and others. Another site helped me a lot http://pptu.lefora.com/2011/02/21/a-practical-way-to-treat-superbugs/ I do cinnamon oil and water mouth rinses and make it as strong as I can take it. It feels like the cinnamon oil goes right into the splits in the bones in the mouth and helps reduce them and the drainage for a time. Also we got a diffuser I think it is called, and it blows the oils I select into the room and near me. This helps too. This site helped http://www.oil-testimonials.com/aromatherapy.php?t=1&q=sinus+infection Even though it says for sinus infections, it is helping because there is an infection in there too. I put drops of eucalyptus, lavender. tea tree, peppermint and frankincense into a sterile essential oil bottle and then put drops onto a cotton ball and breath in as often as I can throughout the day. This helps and is refreshing. It is also a way to get the infection fighting oils into the sinuses near the palate area. You can also rub some on your face I read, but be careful it may burn a little. Don't put it near the eyes. It is best to use your own judgment on these things. I can only share what is getting me some relief since medical care isn't helping. I also take the bee propolis and open the pill and put it right in my mouth where the bones are the worst and the drainage is and that helps too. It really feels like these things that God made, are helping. He says He made the leaves of the trees for the healing of the Nations, so I am happy for that. It has helped a lot to prayerfully ask for wisdom what to do becasue after I dont know how many doctors I have seen, I dont feel I am getting anywhere. I have been homebound pretty much and it hurts to move.

 

I sure hope this can help someone else and I sure hope the people that wrote above are OK. It is important to do research as well as listen to what the doctors say and then decide what is the best thing for you. With the internet you can put in the specific infection name (or any other disease)and natural treatments to find ways to get well too and fight the infection naturally, especially when other things aren't working. I hope this helps. Don't give up, don't EVER give up! Pray for wisdom.

Reply
Missouri, Community Member
7/25/11 1:15pm

Thank you for your thoughts.  When the pain was so intense,  I knew I was reaching the point at which I could no longer tolerate it; I couldn't talk, chew or walk.  Any movement at all  intensified the pain to total madness.  In complete despair I mediated on "releasing the pain" and within 24 hours it had lessened to the point where it didn't break through the pain meds.  I took percocet every 6 hrs then 800mg of ibuprophen every 6 hours, alternating them 3 hours apart.  For me, I found that taking the pain meds on empty stomach was best.  The food seemed to dilute it.  I was also on 3 oral antibiotics and alternated them on a strict schedule.  I was taking something nearly every two hours, but I never got stomach upset.  I drank mostly protein shakes because I couldn't chew.  I slept in a recliner because lying down just increased the pain. When I had to ride in the car (for over an hour each way) to go to the doctor, I found that a small ice pack on my wrists and arms helped.  (The movement of the car was very jarring.)  The ice seemed to distract my brain pain center.  I also drank chamomile tea and would lay the wet tea bag on my lower gums.  The chamomile is soothing and has a mild anti-inflammatory power.  But only use this for up to 3 weeks. After 3 weeks, I switched to a peppermint tea/bag.  I stopped caffeine and all stimulants.  When the pain was big I often just listened to quiet music in a darkened room,  And I meditated/prayed & visualized.  I also did daily castor oil packs on liver and stomach to stimulate the lymphatic system which helps immune response.

There is tremendous power within us and I believe that most of the Western medical responses can cause more problems than they fix.  I totally believe in alternative healing methods.  Finding our own strength and setting a firm intention of Healing is also critical.  We have to want Healing with every thought and fiber.  I journal and write Healing Affirmations and even asked my husband to block negative thoughts about me.  I don't say "I'm suffering", but instead: "I'm Healing".  There's a world of difference in those statements. Let us all Heal together. I'd love to hear what solutions you've found!  Missouri

Reply
Missouri, Community Member
7/25/11 1:16pm

Thank you for your thoughts.  When the pain was so intense,  I knew I was reaching the point at which I could no longer tolerate it; I couldn't talk, chew or walk.  Any movement at all  intensified the pain to total madness.  In complete despair I mediated on "releasing the pain" and within 24 hours it had lessened to the point where it didn't break through the pain meds.  I took percocet every 6 hrs then 800mg of ibuprophen every 6 hours, alternating them 3 hours apart.  For me, I found that taking the pain meds on empty stomach was best.  The food seemed to dilute it.  I was also on 3 oral antibiotics and alternated them on a strict schedule.  I was taking something nearly every two hours, but I never got stomach upset.  I drank mostly protein shakes because I couldn't chew.  I slept in a recliner because lying down just increased the pain. When I had to ride in the car (for over an hour each way) to go to the doctor, I found that a small ice pack on my wrists and arms helped.  (The movement of the car was very jarring.)  The ice seemed to distract my brain pain center.  I also drank chamomile tea and would lay the wet tea bag on my lower gums.  The chamomile is soothing and has a mild anti-inflammatory power.  But only use this for up to 3 weeks. After 3 weeks, I switched to a peppermint tea/bag.  I stopped caffeine and all stimulants.  When the pain was big I often just listened to quiet music in a darkened room,  And I meditated/prayed & visualized.  I also did daily castor oil packs on liver and stomach to stimulate the lymphatic system which helps immune response.

There is tremendous power within us and I believe that most of the Western medical responses can cause more problems than they fix.  I totally believe in alternative healing methods.  Finding our own strength and setting a firm intention of Healing is also critical.  We have to want Healing with every thought and fiber.  I journal and write Healing Affirmations and even asked my husband to block negative thoughts about me.  I don't say "I'm suffering", but instead: "I'm Healing".  There's a world of difference in those statements. Let us all Heal together. I'd love to hear what solutions you've found!  Missouri

Reply
Missouri, Community Member
7/25/11 4:52pm

Thank you for your thoughts.  When the pain was so intense,  I knew I was reaching the point at which I could no longer tolerate it; I couldn't talk, chew or walk.  Any movement at all  intensified the pain to total madness.  In complete despair I mediated on "releasing the pain" and within 24 hours it had lessened to the point where it didn't break through the pain meds.  I took percocet every 6 hrs then 800mg of ibuprophen every 6 hours, alternating them 3 hours apart.  For me, I found that taking the pain meds on empty stomach was best.  The food seemed to dilute it.  I was also on 3 oral antibiotics and alternated them on a strict schedule.  I was taking something nearly every two hours, but I never got stomach upset.  I drank mostly protein shakes because I couldn't chew.  I slept in a recliner because lying down just increased the pain. When I had to ride in the car (for over an hour each way) to go to the doctor, I found that a small ice pack on my wrists and arms helped.  (The movement of the car was very jarring.)  The ice seemed to distract my brain pain center.  I also drank chamomile tea and would lay the wet tea bag on my lower gums.  The chamomile is soothing and has a mild anti-inflammatory power.  But only use this for up to 3 weeks. After 3 weeks, I switched to a peppermint tea/bag.  I stopped caffeine and all stimulants.  When the pain was big I often just listened to quiet music in a darkened room,  And I meditated/prayed & visualized.  I also did daily castor oil packs on liver and stomach to stimulate the lymphatic system which helps immune response.

There is tremendous power within us and I believe that most of the Western medical responses can cause more problems than they fix.  I totally believe in alternative healing methods.  Finding our own strength and setting a firm intention of Healing is also critical.  We have to want Healing with every thought and fiber.  I journal and write Healing Affirmations and even asked my husband to block negative thoughts about me.  I don't say "I'm suffering", but instead: "I'm Healing".  There's a world of difference in those statements. Let us all Heal together. I'd love to hear what solutions you've found!  Missouri

Reply
Dont give up, Community Member
7/25/11 6:36pm

Hi Missouri,

 

So sorry you are going through all this. I have had a very hard 5 + years. Reading what you wrote I could understand when you said, "I couldn't talk, chew or walk. Any movement at all intensified the pain" and "I drank mostly protein shakes because I couldn't chew. I slept in a recliner because lying down just increased the pain. When I had to ride in the car...The movement of the car was very jarring." Wow I could have written those things.

 

Because I had 2 infected root canalled teeth that went into the bone on the right side, and then fractures and micro fractures from surgeries, it hurts to even move my right arm. My right jaw was also dislocated 2 times. The pain goes to the right side of the facial bones and jaw and I get rocking in my palate to the right jaw. Surgeries caused fractures and microfractures in the mouth and right sinus, so they have been very unstable. My teeth have turned grayish in the front which I understand could be because they aren't getting enough blood since the doctor said some bones are necrotic and need to be removed. I do not see how I could have another surgery since the other surgeries broke bones. I don't want to end up worse. What gets me by is prayer. I have a strong faith that God says in Jer 30:17 that He will restore health to us and heal us of our wounds. So I hold onto that with all I can even through pain no one should ever have to go through. I like what you said... setting a firm intention of Healing is also critical... It is critical. If we feel like we are dying and focus on that it isn't good, however like you said if we say, I am healing, it really brings about more faith and hope that we will get through this. Prayer is very important because I have come to find out and am a firm believer in what Jesus said... without Me you can do nothing. I think when we come to the end of ourselves and we lean on Him fully, He comes through for us in marvelous ways.

 

For me I have continued to pray for wisdom since almost all the doctors have failed. I don't know if you read above, but my husband and I found (through a natural MD) using essential oils to be very helpful to fight the infection. We researched it and continue to. So many of them are natural antibiotics like...peppermint, cinnamon, eucalyptus, tea tree and others. What has helped me some with the infections since I can't take any more antibiotics (I have been on 21 rounds) is to rinse my mouth with some of them or a combination and then spit it out. You don't want to swallow essential oils, although I believe there are some you can take internally, but I would research them further before doing anything like that. In addition natural antibiotics you can take internally are GSE, Silver, Caprylic Acid, Olive leaf ext, and undecylenic acid. Also what has helped is to take high doses of Arginine, Glutamine and Lysine since studies have shown those to help with fracture healing and bone and wound recovery. If anyone wants to look into any f these further I would check with a doctor first. I run everything by the natural MD I found.

 

Lastly since being on so many antibiotics, I started coming up very low in vitamins, minerals and amino acids in blood tests. No doctor told me to take probiotics until a natural doctor did, but at that point I had been on I believe close to 14 and a lot of the good bacteria was gone. I take a variety of them since they have different good bacteria. I have to test them and see if they help, if not I stop. These are very important to fighting infections especially if you have been on multiple antibiotics. I am supposed to have a GI look into mal absorbsion soon, so I should find out more. In the meantime, I have been homebound pretty much and try not to move or talk. I still have faith that somehow, someway things will get better. It is just so sad to read what so many people have been through. At times you feel like you are the only one, but glad (and sorry) to hear others understand. One question I do have is if anyone else would say their bones have been soft from the infections? This has been very painful and it has been hard to determine what is causing the softness of the bones. I had Osteomalacia (vit D deficiency) but I think that is better. Please let me know. Thanks! Dont give up

Reply
Missouri, Community Member
8/ 2/11 3:10pm

Hello!  Hope you're doing better.  I've thought about you and it's very disheartening that you're still in the severe pain.  For me, it was so debilitating and prevented me from doing all the other important immune supportive things...good nutrition, excercise, contrast showers, etc.

  Try talking to your pain and asking what purpose it's serving, what person or event it represents, why it's staying, and what would have to happen for it to leave?  Journaling this may be most helpful. Don't censore or edit the answers; just start writing and let the information and feelings come out.  This may be critical to your recovery. 

Missouri

Reply
donna, Community Member
4/27/11 1:48pm

Hi to all,

 

 

I have been dealing with Osteomylitis of the jaw for almost five years now. I have had 13 surgeries to fix my jaw. They had to remove my jaw on the right side of my mouth, and pull all the teeth on my right side also. My jaw is completly croocked. I have a scar from one side under my neck to the other side. They put in a Titanium piece of mettle and 10 screws to hold my jaw together.

They took bone from my hip but, that did not work, it got infected. Then they took 2 pieces of bone, one from each side of my pelvic to fix my jaw, that did not work, it got infected. So now the took bone from the outside of my leg at the bottom, to build the jaw, and thankfully it has taken. My jaw will never be staight again. I have to have the rest of my teeth pulled out at the bottom. I am getting implants put in, however they will not be normal cause they are to be made to way my jaw is right now. Unfortunately this is not covered, and I have to pay for this. The cost is $26,000.00. I have not been able to work since this has happened. I prey no one else will have to go through all that I did. I have not been able to sit and scream and cry. My familt tell me I am beautiful the way I am. They don't understand, I know I am not beautiful, I look Like a freak. So I wish I had someone who would let me scream and cry and say what I feel, instead I have to keep it in for my family. So yes I wish there was a support group somewhere I could go.            My name is Donna all this happened when I was 45. Now I am 50, I never had bad teeth, or gums all my life. So that is why I have soooo much complex, I was always told by dentists I have beautiful teeth and gums for my age.

Reply
Missouri, Community Member
8/ 2/11 3:28pm

Donna, 

Go ahead and scream and cry.  Letting out the emotional toxicity is just as important as healing the infection. Keeping a (private) daily journal or your feelings may also help.  It's an important way for you to validate what you're going through and to release the emotional negativity. 

 

Have you considered seeing a counselor to help provide the support you feel is missing from your family?  They may also be able to help you find a support group or you can call your local hospitals and churches to find out if they have support groups.

 

On another issue, my Infection doctor isn't allowing my dentists to add anything into my mouth or jaw (implants, etc) till after I'm infection-free for at least a year.  I'm going to get a removable partial plate.  Invasive procedures and foreign objects are risky for adding even more infection which is something I won't even consider. 

Decide to be beautiful anyway.

Missouri 

Reply
cindy, Community Member
11/20/11 6:34pm

Hi Donna, Did you find a support group? I feel like the ugliest person in the world. I have osteomyelitis of the jaw from a break. I spent 4 months in the Hyber Baric chamber and with a picc line for the last four months. The surgeons who were treating me were waiting to do the hip graft. I have no faith in them so I  got a second opinion. I have the titamium plate in my mouth now, with the external scars. They also recommended the fibular bone. How did it go? Do  you have any feeling in your face? They damageg both the nerves and my face feels awful. Numb, tingley and painful. Any advice?

Reply
RiannaKay, Community Member
5/ 8/11 5:10pm

Hi all!!!

PLEASE help!!!

I am sooooooo happy i have found this site!!!!

I am from England so unfortunatley not familiar with all the doctors names that every one had been seeing. I will try and keep my story cut down and not ramble! here goes..

I am curently 21 years of age however 4 years ago i got bit on holiday in Greece by what looked like a normal mig bite however it got incredibly infected and didnt heal for a good year and a half - two years. i got bit in the september and come October i had horrific pain in my lower jaw ( right side) I went to the dentist and she did an x-ray, she said it looked like i had bone loss under my tooth... she reffered me to the "dental hospital" however in England the system is different and i was not private. So by the time i had an appointment with the dental hospital everything to me had seemed to settle down....

A couple of months later the pain came back and the right side of my jaw had swollen to the size of a golf ball and the pain was horrific! after many visits back over weeks and months they decided to so a route canal... it was horrible the further they went down my tooth the more inflamed the tissue got... after 4 visits of route canal the pain and swelling still kept coming back, so finally they took the tooth out thinking it may be an absess and taking the tooth out would drain it, so on christmas eve they took it out.

New year came and i ended up in hospital in january i couldnt open my mouth my face felt deformed the pain in my head was unreal.They finally said "right we'll open you up and see whats going off" when i came back from theatre the surgeon came up to see me i felt instant relief from the headaches it was wierd. He said my bone looked like it had been eaten my moths are tiny creates and had all little holes in it - it was a mess. They sent soft tissue and bone away to be tested. I then got a phone call saying i had osteomyeltis and the specific bacteria was Staph ( full name staphylococcus aureus)

I then went back into hospital to have a PICC line inserted and injected with Flucloxacillin for what was intended to be 6 weeks. however i got terrible stomach cramps every time i injected and after 4 weeks developed a nearly full body rash so they stopped it straight away, i am now allergic to penicillin. they took the line out and i was on oral anti biotics for a further 6 months. these included Clindamycin, Doxycycline, metronidazole and a couple of others i cant quite remember of. i developed erythema nodosum whilst on Clindamycin which is a inflamation of the skin which causes red lumps on your arms and legs and feels like arthritis. all the anitbiotics passed and i felt fine for quite a few months and the bang towards the back end of 2010 the flare ups started again and the pain and head pain is just as ever painful, my right temple the top of my head to the lower of my neck kills! my jaw swells at the bottom again but i have also noticed swelling at the top of my jaw too sometimes, what ive also noticed is most recently after flare ups im developing tonsillitus and fever always after a flare up. i also have jaw joint problems, is it called TMJ / JMT?? and i have a splint to wear but not feeling it is very beneficial . I was opened up again after being hospitilied this january that had just passed by the same surgeon and he says the bone still isnt great but it looks better but he CANT find infection this time??? i am sooo frustrated! could it be that  an infection is right in the core of my bone and the bacteria is slowly starting to "breed" again and therefor not noticible? or could it be in different parts of bones they have not managed to see from openening my up inside?? or is it just my muscle spasming becasue of the TMJ i have developed? i know you guys arnt doctors but youve made more sense than any doctor or surgeon ive seen and im sooo thankfull people know what im going through the pain is so intense i just cry at night and dont sleep! the pain is exactly the same as before when they did find an infection but the swelling hasnt quite been as big as before they found out what it was, but then again it did have 3 years for the bacteria to collect together before,and this time its only had a year to collect.. maybe??  ive had to quit dancing and gymnastics i darnt go to univeristy to do midwifery because im scared of all the time off ive had to have will happen again!

ive had every scan imaginable, CT 4 times MRI 8 times PET scan once chests scans everything!!!

A Bone specialist has said that maybe a treatment which slows down the process of bone re growth may help but its quite a harsh chemical and they dont know what it will do! one surgeon has basically said either i have the treatment or ill see you in 4 months end of. theyve run out of ideas because they say they couldnt see infection this time and i feel so disheartened and let down i really dont know what to do i just want to cry all the time.

Any ideas people?? im so sorry for rambling im just so glad ive found people that know just how painfull it is!!! i have tramadol dihdrocodeine and anti sickness because they make me sick, paracetamol, diclofeneac, amitriptyline, gabapentin and others to help with the pain but i am that used to them after 4 years they just dont work.. when im in hospital they inject straight morphene into me when it gets really bad... it doesnt work any more fortunately when im not having a flare up im not addicted to all the pain killerd so i can have a little rest from all the tablets!

Sorry if there are any spellinh mistakes ive written it all quite quickly because im so excited ive founf others that know how it feels!!

 

Thankyou so much for your time of reading this !!

 

Rianna

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K, Community Member
5/28/11 11:57pm

Hi everyone!

 

I am a 43 year old female who has been fighting a infection for over a year.  Last year I had a crown removed because it went bad and had a infection.  I was going to have a implant put in.  The dentist which was recommended by a news station, did a shotty job.  Long story short, he extracted a tooth and did a bone graft the same time.  I had been on antibiotic for the infection for one week before.  He choose to do the bone graft at the same time as extraction.  The next day I had to seek help from another dentist because this one was unavailable.  That dentist had to take most of the bone graft out and drain the infection, and this was treated with antibiotics also.  I had to have the second tooth removed because the first dentist damaged it badly while extracting the first.  I had another tooth damaged by him also that had to have a root canal with a crown.  Over the past year I have been fighting infection.  Being told it was a sinus, then it was a possible gum disease.  Even though I told the dentist directly that the bone graft area was in pain and I was constantly get drainage into my mouth.  They keep telling me no hole is there from sinus.  I started having arthritis problems and now having muscle knots causing the spasms all over.  I have not immune system left.  I have ulcers that started in the mouth on the side of the bone graft and the bone graft is swollen.  I have been told that spot had healed just fine.  I will be setting a appointment with a oral surgeon this week.  I will be demanding a scan.  I had sent a letter to the first dentist demanding my money back since I had prepaid for the implant.  He made me sign a release stating I would not slander him via the web or ADA.  I did, not knowing what I now know.  I have been taking a lot of Vitamin C made liposomal (which is iv effects but drinking it orally).  I researched quite a bit about antibiotics and immunity.  I even order the book from Paul Linus.  The Vitamin C Foundation has some excellent infor on healing the body. I ran across anothers story on root canal and bone graft gone bad that led me here.  I could not believe what I was reading.  The dental association has know for years how toxic bad implants and bone grafts could make us.  I can not believe how sick I have become.  I also heard for the first few years of the crown that it was in my head when I told them it did not feel right.  I am so glad this is coming out and more exposure needs to be focused on it.  I am not letting my kids ever have a root canal.  Please read the links.  I have enclosed one about lipsomal Vitamin C.  http://www.quantumbalancing.com/liposomalC.htm

This one is about taking care of our teeth: http://www.scribd.com/doc/451268/Dr-Gerard-F-Judd-Ph-D-s-Good-Teeth-Birth-to-Death-The-Prescription-for-Perfect-Teeth-Originator-of-the-Alcohol-Cure

This is one about Vitamin C

http://www.vitamincfoundation.org/stone/

I can not say Vitamin C will cure my condition but it has made my pain more manageable.  I was also told to take Garlic, Fenugreek, and Thyme

all help sinus and fight infections.   

I thank you for having this site for others to read and will pray for each one of you! 

Kristine

 

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alberta taylor, Community Member
6/ 4/11 11:02pm

praise GOD, i'm new here but have suffered for 4yrs. going in for another biospy mon. and another surgery.I know GOD is able, so many ppl have said i don't look like i'm going thru anything.My heart goes out to anyone who has had this chronic pain,and my husband and I will praying for all.

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Missouri, Community Member
7/25/11 12:09pm

Yikes folks.  I had no idea there were so many others who've gone thru this nightmare. Mine started after a root canal, although I've had TMJ for years that really didn't cause pain but inhibited my mouth span opening somewhat.  I've also been through periods of severe teeth clinching at night thoughout my 60 years. 

Tomorrow I finish 6 wk of I-V PICC line antibiotic.  I was hospitalized (6 wk ago) with severe redness moving down my chest from my jaw.  Cultures, CT scans, and MRI confirmed Osteomyelitis.  The deadly pain I had for over a month has subsided.  I did have 3 lower teeth removed and the bone scraped 3 weeks ago. 

I'm seeing an oral surgeon and an Infectious Disease Dr.  Getting them to play nice together was a challenge...both wanting to be right of course. But they both came to see me at the same time in the hospital and I told them together that "I need both of you! So let's figure out how to bring both of your perspectives!"  luckily they agreed.

 My GP refused to see me when I went in with what looked like two large marbles on my chin....saying "this is a dental issue not a medical one" and "you'll be lucky this doesn't do to your brain.  If it does you'll have a real problem!"  How's that for supportive care? 

My biggest concern is that when the meds stop (tomorrow) I'm being told to "wait and see.  If you have recurring pain, we'll have to start the meds again." It's scary but I'm determined to work on building my immune system and staying positive.  Any input is appreciated.

Missouri 

Reply
fatface, Community Member
8/10/11 2:36pm

"this is a dental issue not a medical one" gives me chills that was years ago i won,t bore you i'm sure you have read my letters I finished my suprax (cefixime) july 15 th felt the best i have in years for 14 days then I felt it coming back first felt sick

then sore jaw loss of movement of jaw crazy head pain. I was set to go back to work aug 9th not now. I see my id doc tomorow more anti's Iguess ?

He says he sees a few people like me a week I have lived here 22 years and have only met people with it here on this site seams a little funny?

I think they say what we want to hear my gp says I am the only one he has seen.

I would love to keep hearing how eveyone is doing and what helps and what does not, good news or not keep in touch hoping you all to be pain free.

Tom

Reply
Dont give up, Community Member
7/25/11 3:25pm

Hi Everyone,


So sorry people are going through all this. It truly has been a nightmare and it sounds like others have gone through difficult things too. I have had 2 surgeries that broke bones, so I don't want the 3rd that is recommended, which is more aggressive with titanium plates and screws. I have to sleep sitting up, it is painful to talk, chew, move etc.


Can I ask has anyone felt their bones were soft from the Osteomyelitis? There has been near constant drainage from the bones into my mouth for the last almost 5 years. It has cultured heavy growths involved with Osteomyelitis. The frustrating thing is that the bones on the right side of my head where 2 infected teeth were removed feel soft...especially the palate, and they rock at times. Also sometimes the softness spreads to other bones in the area and is concerning. Any input would be appreciated. Thank you!

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chlim, Community Member
8/ 4/11 6:42am

Two years after extacting a mollar-tooth of the lower right jaw I had swollen-hard cheek. Consulted two different dental clinics .Each said that the tooth next to the extracted one is causing the problem. Given antibiotic by each clinic and being advised to either extract the tooth or do a root-cannal. Unsatisfied I consulted a more prominent dental clinic which took a whole jaw x-ray. It was found there was a chronic osteomeyelitis of the right side of the mandible. I was refered to a 'Specialist Oral-Facial Surgery' for treament.

 

I am sheduled for surgery to remove the affected bone which has a 90% success on 5th August 2011 at 0930 hrs Malaysian time. Time taken for surgery will be about two hours.

 

The point here is generally dentist does not check thoroughly. 

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San Diego, Community Member
8/ 6/11 3:12pm

Hello Everyone!

 

I feel so bad reading all these stories, I myself know how absolutely miserable having osteomyelitis of the jaw was.  Mine was untreated for less than 2 months and I thought I was going to die, let alone 7 years like I read some people had it... I can't imagine!!!! 

 

I had a surgery 4 days ago to fix the problem and I already feel like a new person.  DR. McGANN WAS ABSOLUTELY AMAZING.... http://mcgannfacialdesign.com/#/home   I would fly across the country to see him if I weren't local and had OS.  Just read his bio. 

 

My OS erupted after my wisdom teeth extraction. I wasn't eating well after the surgery, actually partied in vegas for 6 days 2 weeks after the surgery. Immune system was down, wasn't sleeping, and I guess some bad bacteria took over and infected my jaw bone.

 

The oral surgeon that did my wisdom teeth stopped believing me that I was feeling pain and his staff accused me of lying to get pain pills out of him.  I went to a 2nd doctor for a second opinion who also didn't believe me.  Finally went on yelp and searched "san diego oral surgeon specialist" got McGann, was fixed in 3 days.  

 

Good luck everyone......

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Caitlin, Community Member
8/10/11 5:43pm

Hey folks, this is my first post here. I've read this page a billion times in the last few months, finding a bit of comfort knowing that I'm totally not alone. 

 

My story is just like all the others, but I'm scared that this is just the beginning. I'm 23, and generally a healthy person... aside from my cigarette habit. I got all four wisdom teeth pulled in March and everything went to hell after that. I wound up with dry sockets, which took a while to heal. After those were healed, I had a burning, aching pain in my lower left jaw. I returned to the oral surgeon who figured it was just bone fragments. He cut me open on the spot without sedation (traumatizing to say the least, but I'll skip details) told me it looked like osteomyelitis, and performed the first debridement (April). They also did a CT scan, which showed a rather small, but definitely-there swiss cheese effect. I was put on Clindamycin for a good month or so and they did another debridement (early May). They then put me on a PICC line (6 weeks) for Rocephin. The first PICC caused a blockage of lymphatic fluid and poured nastyness out for a week before they decided they had to put a new one in the other arm. They did another debridement (June) and were finally able to culture it successfully. They found Alpha Hemolytic Strep, Eikenella corrodens, and Prevotella Intermedia. So guess who got to learn of the (sarcastic) joys of Flagyl. I'm sure you all know how bad that wrecked me. All this time, I wasn't able to work and spiraled into this horrible depression/anger/self pity, which I'm sure you are all familiar with. I couldn't get my mind off of how unfair and cruel life is. Hah. Finally the light at the end of the tunnel....

 

After six weeks of the PICC, they did another CT scan. The image showed no changes, which my doctor said meant that there is no more damage being done. I was still feeling little flare ups a couple of times daily, but NOTHING like they used to be. They took the PICC line out and left me on the Flagyl for a few more weeks for good measure. Then came the glorious appointment where my Oral Surgeon took me off the Flagyl and declared me cured. I felt like I oughta get a certificate or trophy for that. They pretty much told me that they hope they never see me again. 

 

Four months of my life revolved entirely around my pain. Everything I thought or did had something to do with it. I had no motivation and completely let the pain take over my life. I couldn't believe the toll it was taking on me. I had regular thoughts of suicide throughout the days, especially considering the ease of using a PICC line... But now that the infection is supposedly "gone", I'm back at work, starting school next week (to be a Radiology Tech, all my scans and surgeries got me totally obsessed), and feel like I have a whole new attitude. I keep busy, find energy when I have none, and don't waste a single minute feeling sorry for myself. 

 

Here's the thing...

I read this page and see that most of you have been dealing with this twenty billion times as long as I have. None of you have been "fixed" after four months like my doctor seems to think he's done. I've been off antibiotics for a week now. I've felt like my old (and improved!) self for a week. A glorious week. 

Well, the pain is very slowly and subtly creeping back. I wonder if I'm crazy, maybe I'm so used to the pain, that I still just think I feel it...?

I couldn't stand to go back to that routine. A week of feeling like I could take on the world, and now I'm absolutely terrified of losing that. Hah... typing that up got me crying now. Haha... I'm crying to the internet...I'm scared to even call my doctor. I can't hear bad news. 

 

Those of you who have suffered so long must be incredibly strong. 

I really want to hear that I'm not sick anymore.

I really need to hear that no matter what, I can still have the life I want. 

And I guess at this point, I really just need to know that somebody gives a shit. Everybody's sick of hearing about it. Nobody knows what to say. At 23, I have a lot of time ahead of me. I can't spend it this way. 

 

 

 

Reply
Missouri, Community Member
8/13/11 11:44am

Hey 23,  I'm on a similiar schedule as you.  Root Canals May 2, oral antibiotcis for 4 weeks, hospitalized June 12 and diagnosed with Osteo, then 6 wk of PICC Rocephren and during that time 3 root canaled teeth removed and debridement.  The first 2 wks off antibiotics were euphoric by comparison.  But there are daily twinges and my energy is inconsistent.  It is terrifying. 

 

I humbly offer to share my beliefs and the resources I've found.  The infection and the treatments are devestating to the immune system.  It can take many months to rebuild.  Nutrition is critical but it's also very difficult with the general quality of our food sources.

 

 Two Resources:  Book "Uninformed Consent" by Hal Huggins, DDS & Dr. Levy and "Root Canal Cover-Up" by George Meinig, DDS.  This info is critical to understand the infection/toxicity process.  Huggins also has critical info on recovery & healing.

 

Website:  "Western Botanicals" run by Dr. Kyle Christianson.  There is good information on the website:  look for the "Incureables" list and how to build the Immune System. 

 

Healing is a choice, a commitment and life style.  I journal everything I eat and drink and any physical and emotional symptoms.  I take a green drink "Earth's Nutrition" twice daily, 8,000 mg of pure Vitamin C, at least 5 cloves of raw garlic along with other vitamins and the "anti-plague" tonic.  Rest of my diet is fresh veggies, fruits, sugar-free yogurt, chicken, turkey and very little beef.  No refined sugar. Only whole grains. 

 

I'm very lucky to have a close friend who's an herbologist/nutritionist.  She gets referrals from physicians who send post-cancer treatment patients to recover from the treatments.  Our situation is very similiar.  She told me when I was diagnosed, "you can learn to manage it".  This seems to be consistent with all the relapses I read about.  Future dental care must be extremely suspect and chosen carefully with dentists and an Infectious Disease Specialist.

 

It's an individual process and what works for one may not work for another.  Mild exercise, emotional clarity and spirituality are also strong components in becoming and maintaining a Healthy being.  I'm a 60 year old female who's been extremely successful in building a business but I put myself on the back burner for many, many years.  I now have a life-time of poor habits to change.  You have youth on your side.  You have an opportunity to start doing things well and have many wonderful decades ahead of you.  Let me know how you're doing.  Missouri

 

Reply
Marie, Community Member
8/21/11 2:19am

Hiya,

 

You are crynig at the right place:) You couldn't be with a more understanding bunch of folks than us here.

You, unlike the majority of the people on this board, have a huge advantage - the oral surgeons caught the problem very very early on, which gives you a very big chance at successfully being cured. The chance at being cured after having CSO for more than 5 years is basically zero - it is a lifetime battle unless you have the affected area resected.

So, chin -up. Go back to your OS and discuss the fact that you feel the pain creeping back in. It may be worth going through another load of IV antibiotics or oral ones, just to reassure the infection is gone or to keep it from creeping back. Pain is always a sign that something is not up to par....on the other hand though, you may have suffered nerve damage during debridement, and perhaps then it would be helpful to try carbamezepine or some other neuro med and if that works, then you know it's nerve pain, not infection. If you are now experiencing that ugly pulsing, gnawing pain, then it's infection. If it's burning, tingling etc. then it's nerve pain. But then again TMJ pain could be playing a role in the chronic pain you may now experience as a result of treatment. That is why you should see your OS asap and discusss whether it's nerve pain, TMJ pain or unfortunately pain from an ongoing infection. Do it before it is too late....the bad news later on that you might end up hearing if you wait too long is that that there is not other option but to resect the bone (like in my case and several others on the board). My life has been totally screwed up by CSO as it "arrived" during the years when I should have settled down and had a family. Instead I ended up alone and I can't imagine anyone wanting a women without half her lower jaw in the future. I hung my career interests up as well...your brain stops functioning normally when it is plagued by chronic pain.

You are at the beginning so do everything you can now, don't let the doctors brush you away. And don't let fear stop you. Face the problem and go and deal with it or it will haunt you for many more good years of your life. I spent years wishing I was dead because the pain was so intense and nobody knew what the problem was and always brushed me off saying it was all in my head. After being diagnosed last year, the CSO looked hopeless but my OS and I decided to give it time, to give it perhaps a year on IV antibiotics (I have a subcutaneous port system) and then face the outcome. I spent a good 2 months last summer angry at the world and mainly at all of the doctors who had failed to see the problem and made fun of me, making me feel like I belong in a mental institute. I was furious, but it did not help the 7 weeks I spent in hospital go by pleasantly. Being angry only made things worse. But, I guess it was a phase I had to go through in order to come to terms with the whole disease and the possible outcome, which is what I am facing now. My CSO went undiagnosed for too long and even after a year of IV antibiotics, it keeps spreading. Last summer, resection would have "only" have meant 1/3 of the mandible, now perhaps the entire half including the left TMJ. Perhaps even the whole mandible if the next biopsy samples test positive on the other side that we thought was unaffected so far.

Anyway, I have gotten carried away....just follow your gut feeling and talk with your OS. You don't want your body to get accustomed to the infection because then nothing will work.

 

Take care and let us know how you did.

Don't give up....I too have become inspired by my battle with CSO and want to pursue a career in medicine, perhaps even radiology, once i get this whole mess sorted out:) There is always something good behind all of the bad things that happen:)

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Caitlin, Community Member
8/31/11 2:51pm

Thanks a lot for the inspiring advice! I have since gone back to my OS multiple times. They wanted to put me back on antibiotics, but we've decided to give me some time off to see how it goes. CT scans aren't showing any new damage, but there's still strange pains coming from the area. Now they're considering hyperbaric oxygen therapy. I've read a bit about it and it seems like it could really help, especially since I'm at such an early stage. They've thought about wiring my jaw shut for a short while, too. There are no fractures (just a big gaping hole...), but they think a bit of rest could help it heal. That's just a VERY worst case last resort, though. So basically right now, we're just trying to figure out the next step. 

 

You're right, I am so lucky I got the doctor to realize what was wrong before it was too late. I can't believe what you're going through! A resection sounds terrible. If you don't let this stop you from having the life you want, I won't either, deal? But I'm glad you've learned that anger only makes it worse. I've finally learned that, too. 

 

You say you hung up your career interests as a result of all this. Well, I've gone back to school to begin pre-requisites for a radiology tech program. I'll tell you what! Anatomy/Physiology courses will do wonders! For me, at least, just from what I've learned already, I have FAR more confidence speaking to doctors than before. I've let them all know they should use "big girl" words with me. It's helped me to understand whats going on instead of just imagining toxic goo in my jaw. Not to mention, the doctors have stopped treating me like an idiot. You say you're considering radiology. I say go for it! Use this experience as a springboard for a new career. It's never too late. Trust me, if i can do it, you can do it :)

 

 

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tariq, Community Member
8/15/11 1:51pm

hi all

my name is Tariq 29yo i am from kuwait

 

 I have been dealing with Osteomylitis of the lower jaw for almost five years now.

I've been through all the treatments from I-V PICC line antibiotic and oral antibiotic .

 Now decided to do surgery in oct 2011 for the cultivation of the lower jaw. Will take bone from my leg and planting it in the jaws with a titanium plate.

 

 so what do you think folks I'm confused and I need your help.

Reply
Marie, Community Member
8/21/11 2:38am

Dear Tariq,

 

Go for it....I have read that it is the only way out once you have had CSO for so many years. I am heading for total resection like you in October and am mentally prepared for it. Several people on this board have gone through with it and are now pain-free and look "normal" except for the scar under the chin, in the neck line from microsurgery. Inspite being on IV antibiotics for a year, my CSO has literally doubled. So it is time to accept that the treatment has failed and I want to move on in life so resection is the only way to go. Otherwise, my body will continue to live in "alert" that there is an intruder and continue fighting round and round and no matter how many herbal supplements and Chinese herbs and things I take, the problem will not go away (I take various supplements and they do not get rid of the underlying problem, but only support the body in battling - so no, I am not bashing those of you promoting herbal stuff on this board).

I am going in for my second follow-up biopsy in 10 days, which will help us diagnose the span of the CSO. My last follow-up biopsy came back positive even after being on IV ATB for 7 months and I ended up with sepsis from the bacteria entering my bloodstream during the operation! I do not want to go through that again. This time, samples have to be taken from more places as the CT scan shows the sclerosis has doubled and both my TMJs are suffering from osteoarthritis now so I will also have another arthroscopy done to make sure the left TMJ does not need to be removed along with the entire left mandible - thus total prosthesis. A sample also need to be taken from the chin as the area under my front teeth  looks bad...that worries me as it makes reconstruction more difficult and then of course I am concerned the problem will be "visible." The reconsrtuction will be done in two phases to play it safe - the "Marx" method - first removal of the affected bone replaced by a titanium plate and IV antibiotics for another 6 months to ensure the amputated ends heal well and the infection does not spread elsewhere. Then reconstruction using bone from the hip and microsurgery. It is a method that has proven success with CSO patients and although it sounds scary and horrible, those who have gone through with it are very pleased with the outcome and mainly that they can move on in life and put this all behind them.

You have nothing to lose - there are just two options - live with the excruciating pain and have your body suffer from constantly having to fight - or get rid of it the "drastic" way which is not so drastic anymore as surgery has advanced incredibly.

 

Take care and I will be with you in thought in October:)

 

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fatface, Community Member
8/23/11 3:57pm

hello again

Sounds scarry alright ! who will do your surgery and where?

I saw mine last week and he said he felt that surgery was not the route for me because it was sclerising and is sending me back to my id docter sept 8th .

5 1/2 years of searching finely find out what it is and they send me back and forth.

I would love to hear of any surgens who do this surgery I live on the west coast of Canada.

Hope all the best

Tom

Reply
Marie, Community Member
8/23/11 5:18pm

Hello fatface,

 

I only know of oral surgeons in Toronto, but I am out in Europe at the moment and belong to a guinea pig group as this diagnosis and treatment is totally new out in these parts of the world. Not much fun, but I am glad I have a diagnosis and that my oral surgeon is willing to follow "Western" standards, which is the "Marx" method for chronic osteo. I am in good hands, at last.

The fact that things keep sclerosing in your case shows something is still "alive" and causing your immune system to respond this way. The body is protecting itself by having the bone sclerotise. This is why back in January after my first follow-up CT post radical decortication, I knew something was wrong and treatment was not working because not only was the constant throb still there, but the sclerosis had doubled after the initial 6 months on IV. If the bone was infection free, then I figured there would be no reason for sclerosis to continue. The follow-up biopsy later on confirmed my theory. And I am expecting that the up and coming follow-up biopsy after another round of IV antibiotics will come back positive again after looking at my most recent CT scan. I am not so much the type to suffer from the "moth eaten" look, I am the hyperostosis type - I build back too much junk bone.

There must be a faculty hospital or clinic out where you are fatface that specialises in CSO, or that at least dares to try treating it radically? Every larger city in Canada has a maxillofacial clinic. Your ID should be able to recommend someone no? I read a recent article somewhere which helped me realise how bad CSO really is - the article from a scientific journal stated that CSO is every infectious diseases doctor's nightmare as it is UNCURABLE. The destructive process can only be stopped, however the damage cannot be undone. Therefore it is of the utter most importance that CSO be caught early on, which as we all know is not always possible. It also explains why so many doctors have thrown us around like hot potatoes - very few want to take responsibility and help us patients. We are walking oral surgery "f"-ups. We are examples of what happens when doctors don't listen. Had somebody listened when I came back after wisdom tooth extraction complaining of a dry socket and incredible throbbing pain, I would not be where I am today. Nobody bothered taking care of the post-surgical ailments back then. And now one has to deal with the consequences drastically in order to move on. I no longer want to mess around with CSO, it won't go away and it is only spreading. Optimism and wishful thinking aside. There comes a time when it is simply time to say enough is enough, a miracle is not going to happen without surgical intervention and to simply face the fact that my mouth will never be the same and unfortunately I wll carry visible scars for the rest of my life, but I will be healthy again.

Take care and keep in touch. Don't give up fatface, call around, try and find out where a dental/maxillofacial clinic or department is that performs surgical total reconstruction of CSO.

 

Reply
fatface, Community Member
9/22/11 2:37am

You are are so right about time .

got my ct scan back today not good (the sclerosis involving the left mandibular ramus has extended superiorly with involvement of the left mandibular condyle.A few small erosions are now evident along the anterior aspect of the left condylar head. there is accompanying myositis involing the left masseter and left perrygoid musculature.There is a small linear defect extending from the left mandibular canal through the lateral cortex of the mandible, possibly on the basis of a cloaca. Findings are again concerning for chronic osteomyelitis.)

 

does this mean what i think it means base of my jaw in jan this year to the top of my tmj today ?

Tom

Reply
Marie, Community Member
9/22/11 3:00pm

Hiya Fatface,

 

Doesn't sound very good. Have you managed to find a good maxfac specialist? I hate to use the comparison, but CSO spreads like cancer and only radical solutions work. Farting about with antibiotics after already suffering with CSO for years is useless. I have been on IV antibiotics since May 2010 and the results from my second follow-up biopsy on Sept. 1, 2011 show the furry group of bacteria I thought I "only" had in my left mandible is everywhere, in both my maxilla and my mandible, right and left. The left mandible is visibly destroyed, very little blood supply, basically almost dead bone. But I am hoping my oral surgeon will find a way of removing it safely without causing further complications to the other parts which are not as bad, more or less diffused rather than purely sclerotic. I cannot imagine having my entire mandible replaced. Mind you my maxilla as well. I spent several days crying over the biopsy results, as it leaves very limited options for operation as operating is risky. My first follow-up biopsy led to severe sepsis due to the bacteria from my jaw entering my blood stream during the procedure, and the 2nd follow-up led to a milder case of sepsis. This just shows how dangerous osteomyelitis is. I am extremely tired of the whole thing, not to mention the grueling pain one has to deal with on a daily basis. Nobody understands around me, I can't hold a 9-5:00 job, I can't live with anyone as nobody would want to put up with someone who has chronic pain. I am just hoping for a miracle at the moment, hoping my surgeon will have the courage to take the risk to operate.

Take care fatface and make sure you have someone take you seriously and give you the adequate treatment you need now to stop the CSO from spreading.

Sorry for moaning and groaning like a baby folks. Self-pity occasionally creeps in.

 

Reply
Marie, Community Member
11/ 6/11 10:05am

Dear Fatface and all,

 

I have just had the left half of my mandible resected and replaced with a titanium plate 10 days ago. I just want everyone to know that it is not at all as scary as it sounds and once the swelling goes down, and if the surgeon has done a superb job in terms of aesthetics (the way the titanium plate meets the amputated ends is important in the final outcome aesthetically), you can't really notice it unless someone looks real hard at you or notices the scar on the neck. My surgeon opted for inserting the plate from an external approach rather than an internal approach to avoid oral flora and post-operative complications with eating, so I have a scar on my neck which would be the result either way in the end, in the second reconstruction phase, during which there is no other option but to use the external approach. Reconstruction will take place in one year, once the amputated ends have healed 100% infection free. If your alveolar nerve is not severely damaged, your surgeon can save it - you do not have to face chin and lip numbness. Mine has been damaged for years, I have suffered from a numb lip and chin for over 3 years so having the alveolar nerve removed is no change for me....I was told that though before heading for the operating room that provided a neuron is found, the nerve can be saved even in my case. The neuron would be removed and the nerve put back together again. However, after 7 years of hell, my nerve learnt to deal with the compression and damage by growing new branches, so there was no hope in hell for it. It had to be severed. In terms of post-operative pain - I admit I spent several sleepless nights and was hooked up to a pump with Dippidolor (opiate) 24/7 while the pain was still fresh. Now I have decided not to take anything. My oral surgeon is extremely pleased with the result and even with the fact that my facialis nerve was damaged to the minimum...it receives a bit of a blow when the plate is pushed in. The facialis controls the way your lips move when you talk and when it is damaged a great deal, your lips deviate visibly a lot when you talk. It is reparable though, just needs time and rehab exercises.

I hope this is a bit of inspiration for those who have tried all sorts of treatment, and treatment has failed. Do not be afraid of going ahead with resection. Your body will feel a great sense of relief once the infected bone is gone. No more occasional achy joints and muscles or mild temperatures.

Take care all and do not give up. Fight for the treatment you deserve and do not fear even the most drastic of options.

 

Marie

Reply
cindy, Community Member
11/20/11 6:12pm

How did it go? I have osteomylitis of the lower jaw resulting from a surgery gone bad. I ended up with a broken jaw that went undetected for 3 weeks. I have no jaw bone left just a metal plate. Also I have lost feeling from my lower lip down. The vascular fibular graft was also recommended to me. Isn't there any other bone but the fibular? Has anyone had any of these sugeries?

Reply
jkhamz, Community Member
8/26/11 9:17am

yeah, iam john and i suffer from the same illness, tell me more about the support group

Reply
ju, Community Member
9/ 8/11 12:14am

I am 23 years old and have been dealing with Osteomylitis of the left mandable for 3 years now.  We never knew what it was until i admitted myself into hospital because the pain was so severe.  I have been at the Maxillofacial clinic for a while now, they seem to know what they are talking about.  They have done 1 biopsy but couldnt get to the infection so they are doing another one this week.  They told me that after they detect what infection it is, they will put me on heavy antibiotics for 3 months.  for 6 weeks of the 3 months i will have the anti biotics going through my arm and the doctor will come to my house everyday to give it to me, and the rest of the time i will be on oral antibiotics.  I feel so sorry for all you who have had osteomylitis for so many years.  Do you find the pain comes and goes? At the beginning when the pain started it was so bad that i couldnt sleep and would cry all night long.  Since i went for my first Biopsy and was on the antibiotics the pain hasnt been as often as it was...  I cant believe that some of you have had operations and the pain is still there. I hope the biopsy and treatment work for me.  I have been living on pain killers and Antibiotics for so long now and its definatly not healthy! 

 

Goodluck everyone!

 

 

Reply
SEATTLE LISA, Community Member
10/ 5/11 5:42am

Hello....

I guess this is not exactly my "ideal" club I want to belong to, but I'am thankful to have found others who I can relate to. I'm hoping someone can help me find a doctor who has a clue!!  Is there anyone out there who knows of a good doctor in the Seattle, WA area (anywhere in WA), who specializes in Osteomyetitis????

Although, I am new to this - I feel after reading all of your stories, I have learned a lot more about Osteo, and I have gathered some much needed strength from you all ! Best Wishes!! 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Reply
Jaw1, Community Member
11/ 7/11 10:12am

Hello-

Does anyone have any Doctor recs from the Charlotte, NC area?

Thanks!

Reply
Smiley, Community Member
1/ 5/12 10:02pm

Dr Carl McMillan in Cary or Cornelius NC.  I have been to him and he is very good

Reply
jkhamz, Community Member
11/ 8/11 2:25pm

hey wendy, i am kamau, and i also suffer from the same ailment though on my left leg,hope you feel encouraged as i have persevered for the last 13 years.i am 22 and i am i have strength to go on and hope you feel the same way.

Reply
mmm, Community Member
11/14/11 8:44am

Hi,
I had chronic osteomyelitis of the jaw(maxilla) for over 2 years and defeated it. I am now 100% symptom free.
Please read my blog for any advice
http://mick811.blogspot.com/
Please make any comments.

I know this info can reduce the suffering of some of you

Thanks

Reply
Marie, Community Member
12/ 2/11 2:00am

Dear mmm,

You have got to be kidding with your blog!! It has made my blood boil...at least I am warm in the freezing winter weather. You are giving people advice to go ahead and self-diagnose and self-medicate themselves using whatever antibiotic they think suits their ailment when they do not even know what is officially "living" in their jaw??? NEVER EVER PLAY AROUND WITH OSTEOMYELITIS AND ANTIBIOTICS!!! Osteomyelitis is a severe disease and can even be lethal once it becomes systematic. Believe me folks, if you have osteomyelitis, sooner or later you will find a doctor who is able to identify it. Once it becomes obvious to the naked eye on CT, MRI or whatever imaging tool, nobody can brush you away. You just have to perservere and keep knocking on doors until someone is willing to help. Never self-diagnose or treat yourself for osteomyelitis. You could simply have nerve damage or TMJ pain, which does not require ATB treatment. Never give up hope, I ran around for 5.5 years until I finally found a doctor who could identify the CSO. Unfortunately it was too late and 7 years after the whole thing started I lost half of my mandible. But I am under professional medical monitoring and trust those who are taking care of me. Never would I go and self-medicate myself and put m y life in jeopardy pretending to be a quack.

Never lose hope and faith. Keep on knocking and a door will open....believe me it will one day...

Reply
mmm, Community Member
12/ 4/11 3:05am

I would only recommend this even be considered for those that have lost all hope, especially in countries with poor medical services.

I had chronic osteo diagnosed through a nuclear bone scan.

I posted this as I haven't read one post with successful treatment on this thread without amputation of the jaw. At least now there is one.

Everyone has the right to chose their course of action and I chose mine.

I did 2000+ hours of research before I acted though.

The serious side effects for the antibiotics I were on were less than 1/1000 according to the CDC.

Yes I took a risk, however I would rather go down shooting and have a chance at life than live with osteo

 

Reply
chitown, Community Member
1/ 5/12 7:41am

mmm,

I read your post I can understand trying to be aggressive with your treatment, but that seems dangerous. Were you under any kind of doctor's care, was anyone monitoring your progress?  I'm not really judging just curious.  Do you live in the states?  I know meds are easy to get on line, just amazed you figured out the course of antibiotics.  If is worked for you great, just not sure if it's the safe route.  Please keep us posted on your progress.

Reply
mmm, Community Member
1/ 7/12 2:01am
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Hi,

I have no progress. The battle has been won. I have been off antibiotics for a month or so now and am symptomless, and have kept my jaw too.

Fluroquinolones (levofloxacin for me as it was affordable) + rifampicin has the highest success rate for osteomyelitis of any antibiotic ever period, parental or oral. Over 90% in the very few studies that have been done. They have very high bioavailability(~99%) so oral is just as good as parental.

Anyone who thinks that Fluroquinolones and rifampicin are 'quack medicine' for bone infections is an imbecile of the highest order and has clearly not done any research.

I was on this combination for about 1 year. Didn’t notice much difference for the first 4 months. And slowly but surely they killed all the bacteria. I stayed on them for a few months after being symptomless. Eventually they will always win! , it might take 2 years though or more for some. They have very high bone concentration, are very highly bactericidal against gram + and anaerobes and the combination prevents resistance.

I was monitoring my progress, I had regular blood tests(FB+LFT+Kidneys and all over vitals while on them).

Oh and i don't live in the states and I had seen 3 O/S's, 2 ID spec, 2 dental surgeons, 2 dentists and a GP and been opened up 8 times and been on 10 antibiotics. And they all failed me with their outdated treatment plans and poor knowledge of antibiotic advancements in the last 10 years.

 

NO ONE should follow me unless they have lost all hope and only think of ending it all.

This is one step before that as you have nothing to lose.

 

Thanks

 

Reply
fatface, Community Member
12/29/11 2:56pm

hello again

 

Well my id doctor droped me last week he said he could not do any more good luck.

The good news is I am waiting to start hyperbaric treatment in vancouver .

It will start with ten dives followed by debridement then twenty more dives

working with an id doctor and an oral and maxillofacial surgeon very happy to be moving forward. Being on the oral antibiotics seem to help a bit it is so hard to tell when it is up and down so mutch I feel lucky when I get six days off the pain.When that happens the swelling goes down and I can open my mouth a little more each day yea better food.

I hope your recovery is going well.let us know how you are doing.

I agree keep knocking all It took me years to find the door and they don't think Im nuts!

 

Reply
fatface, Community Member
12/29/11 3:02pm

hello again

 

Well my id doctor droped me last week he said he could not do any more good luck.

The good news is I am waiting to start hyperbaric treatment in vancouver .

It will start with ten dives followed by debridement then twenty more dives

working with an id doctor and an oral and maxillofacial surgeon very happy to be moving forward. Being on the oral antibiotics seem to help a bit it is so hard to tell when it is up and down so mutch I feel lucky when I get six days off the pain.When that happens the swelling goes down and I can open my mouth a little more each day yea better food.

I hope your recovery is going well.let us know how you are doing.

I agree keep knocking all It took me years to find the door and they don't think Im nuts!

 

Reply
Marie, Community Member
12/29/11 3:33pm

Hiya Fatface,

I am smiling ear-to-ear from your positive news. It sounds like you finally have found some support and are being taken care of. HBOT and debridement are a start. You will see how things go. Believe me, you can tell whether or not it has helped - don't let anyone tell you otherwise, if you still get a gut feeling at the end of it all, telling you that the furry friends are still alive and kicking, or that the bone is irreversibly damaged. My mandible was irreversibly damaged - it should be ivory white and when it was resected, my oral surgeon said it had turned pinkish-grey. Thus, no treatment could have any long-term positive affect on it anymore. It was too late in my case. But everything has a reason in life is what I believe, and even my sufferings with CSO have presented in my life for a reason.

Otherwise... I am doing ok 2 months after major surgery. I lost my mandibular nerve, so there is no pain in the back amputated end (just behind the former wisdom tooth site). The mandibular nerve can be saved in some cases, provided it has not been severely damaged. Mine had unfortunately started to live a life of its own and grew new branches. The front amputated end around the lateral incisor occasionally comes to life and I can feel the pain in the healing bone in that area as the nerve that continues from the mandibular nerve towards the front was left intact. Other than the cut under my chin, which was neatly done along my natural neck crease, people who know me say they cannot tell the difference....and they are not being polite. Aesthetically the result is better than I had expected. I do have temporary troubles with partial facial nerve paralysis from when the titanium plate was pushed into place, but that is just a matter of time. I am not a huge talker, so it is ok. But should I be amongst people and get carried away talking or laughing, then you can notice my lower lip deviate to the side that is "healthy".

I have about a year to two years now before reconstruction can take place. I even met up with my oral surgeon in Canada while home for the holidays to discuss the option of using bioimplants (he is the brain behind the creation and production of bioimplants) rather than risking a bone graft from the iliac crest. I am afraid that I am not the best bone healer and do not want to risk ending up with an infection spreading elsewhere, which leaves me inclined to the option of undergoing reconstruction using a bioimplant. He also offered a nerve graft with the help of a neurosurgeon, which I would really appreciate. I would love to feel my lower left lip again in my life, even if it were only 20-30% of sensation back. Better something than nothing. This option has not been offered to me out in Central Europe. So something to ponder about. The down side is the cost of bioimplant material. It is around 1200 CAD per cm3 and I need 8 cm3 of the stuff.

Anyway... I hope your treatment works and allows you to move on in life and put this all behind you.

Wishing you all good or better health in 2012 (Health is Wealth as an old good friend of mine used to say) and may all you wishes come true!!

Marie

Reply
fatface, Community Member
2/14/12 1:10pm

Hello again

 

Got my start date march 5TH ten dives then surgery then 30 dives.

Your oral surgeon said the bone was grey? My surgeon said the same thing after my first biopsy and says he thinks I have "inflammatory or reactive osteomyelitis"

and feels debridement will not help its Hyperbaric treatment orreplacement of the left side of my mandible.So i guess i'm moving to Vancouver for a bit I sure wish

msp would cover some costs!

Everyone should check out msnbc.com 3-d printing reconstructs. A Jaw replacement in 4 hours after printing a new jaw on a lazer printer a full mandible!

I sure hope this comes mainstream soon.

 

Hope all are well

Tom

Reply
KKK, Community Member
2/16/12 7:16pm

My daughter was diagnosed with Chronic Recurrent Multifocal Osteomyelitis in 2007 after her lower mandible swelled and became unbearingly painful. She had recently had braces fitted and so we initially thought that it was an abcess in her gum. Her dentist took an OPG and couldnt see anything so tried antibiotics which did not have any effect. After 48 hours I insisted that she see a specialist. She was referred to a Maxilofacial surgeon who ordered a CT and noticed an abnormality in the bone so did a biopsy the results of which resulted in an initial diagnosis of Garres disease (non bacterial osteo). She has also been having trouble with pain in her feet at the same time and so we were also seeing a podiatrist who diagnosed unilateral  "Friebergs disease". My girls maxilo surgeon noticed that she was wearing a support boot on her foot and suggested that she might have a disease called CRMO which was very, very rare. Apparently he had been at an international conference where the disease had been mentioned in passing and it stuck in his mind. He ordered a full body scan (nuclear) which showed that she had 6 areas of inflammation and sclerosing diagnosed as CRMO. We will be forever grateful to this Dr for shortcutting our diagnostic experiences! She was referred to an Osteo and told that there was nothing he could do other than give her NSAID's for the pain. The braces were also a complicating issue as there was no previous recorded instances of a child with active CRMO in the mandible wearing braces.

 

I thought that there had to be someone who could help her so began researching the net and found a research Dr specialising in the disease in USA. I contacted her and she rang me here in Brisbane, Aust to tell me that there was a Paediatric Rheumatologist working in Melbourne who had some experience with treating CRMO patients. He in turn advised me that a specialist had recently arrived in Brisbane from the Great Ormond St Hospital, UK who had been very successfull in treating the disease. What a godsend!  3 years of steriod infusions, weekly methotrexate injections/pills and 4 x 4 intravenous Pamidronaate infusions later, she has been in complete remission for nearly 2 years. And she continued to wear her braces!

 

Only complication now is that she needs to have her wisdom teeth out in a couple of weeks. Use of Pamidronate has increased the risk of her suffering osteonecrosis of her jaw although the risk is fairly minimal given her age and state of health. I am more concerned that the surgical trauma to her jaw will set off the disease again. Guess we will know fairly soon....

Reply
Andee, Community Member
3/12/12 6:19pm

 

It is a harrowing thing to go through.

 

Our 8 year old daughter was admitted to hospital in Wellington, NZ, in September last year, unable to walk, with a very sever curve in her lower back and in great pain.

 

It was our Chiropractor that first noticed a mild scoliatic curve which then degenerated over 5 weeks to the point where we had to carry her everywhere.  Once in hospital she had MRI, bone scan, CT and full body x-rays. They indicated a change in density in two of her vertebrae and destruction of the bone (although they were not located next to each other). As the bone destruction was in such a hard to reach place they first did a needle biopsy, which showed a whole lot of stuff but nothing to help with diagnosis. As usual, only through a process of elimination did they diagnose non-bacterial Chronic Multifocal Osteomyelitis. The fact that she got spots and pustules on the palms of her hands and soles of her feet helped (this is known as SAPHO and can occur as part of CMO/CRMO). We now just have to wait for the years ahead to see if her CMO happens to also be recurrent (CRMO) of whether it just goes away.

 

We are lucky in that we are able to manage her pain and the SAPHO through ibuprofen alone and she is now back at school. She still has a scoliatic curve in her spine although much less sever and not in need of any intervention.

 

We are actually with the Orthopedics in Wellington Hospital, and while great they have no real experience with CRO in children.  Luckily there is a great Paediatric Oncologist in the Hospital who used to work in a rheumatology clinic in Germany and has seen a fair number of cases across Europe.  From what he says there is so little known about the syndrome that it is not unusual for it is move between different medical specialisations.  He sent me a couple of great medical papers on the syndrome and am happy to share if that would help – there are so few available.  They indicate how different the approaches to treatment are around the world and that some people respond to one approach and others to another. 

 

All the best to yoiu and your family and hope the surgery goes well.

 

Reply
JR, Community Member
11/24/11 3:14am

WendyO, Not sure if you have gotten any relief in the last 3 years since your post. Or if you have found a forum? I was diagnosed with chronic sclerosing osteomyelitis in 2001 after 1 year of intense pain and multiple doctor visits.  Dentists, Oral surgeons, ENT, Infectious disease doctors and my general practioner.  I have seen some of the best doctors in the NW.  However, it took conitinued DETERMINATION on my part to saw "THIS ISN'T TMJ or A SINUS INFECTION or A BAD TOOTH!"  When a CT scan was finally ordered they thought it was a tumor, then after a biopsy I was finally diagnosed.  I was on clindimiacin for 6 months and then intervenious antibiotics for 8 weeks.  It was HELL.  The pain and surgeries that followed were so hard to deal with. 

Today,  12 years later I still have chronic pain.  However, instead of the multiple pain meds I used to take my new pain doctor has had me on ZONOGRAN for the last 3 years.  It helps with the nerve pain form the exposed nerves that the diesease has left. 

I do not know if this helps.  However, I am curious if you ever found relief in your situation. 

Godbless,

JR

Reply
chitown, Community Member
1/ 1/12 3:36pm

I'm new to this site.  I've been reading everyone's stories and was wondering if anyone can give me any insight.  I have not been diagnosised Osteomyelitis, but I've been in and out of doctors lately without any success.  My original complaint has been a feeling there is something in my throat when I swallow.  Went to the ent and he didn't find anything.  I also went to my dentist who could find or feel anything.  But he did say I have an abcess in one of my lower molars which has a crown on it.  Oddly he didn't seem concerned and told me to come back in 6 months...odd.

 

I have as of lately experiened tingling and numbness in both hands and occasionally in my toes.  I also am experiencing some numbness on the left side of my face and lips.  I sometimes feel pressure in my sinuses and from many doctors I've been told i have post nasal drip and it seems to only be on the left side. I really don't have jaw pain or swelling.  I'm also starting to experience fullness in my ear, but no evidence of an ear infection. 

 

I can't even begin to tell you how scared I am.  I am not prepared mentally for this diagnosis.  Has anyone else experienced some of this issues.  My mind is constantly racing I can't even think straight.  And what doctors handle this situation?  Is is your primary, Oral surgeon, infectious disease....can use some info.  Good luck to all of you who are currently battling this infection.  I live in the Chicago area if you can point in the right direction that would be of great help.  Who should I see first?

Thanks

Reply
Bridget, Community Member
1/23/12 12:13pm

I too have Osteomyelitis since November 2010.  It has been a long road both physically and mentally painful.  I hope today is a better day for you, and maybe you have gotten some answers to your questions by now and won't need my advice.  When I read your post" feeling there is something in my throat when I swallow," I felt for you.  I remember before my second Cauldwell Luc procedure to debride the osteo, I woke up one morning in awful pain, and it felt like there was a mass or something in my throat as you described when I swallowed.  I called my local oral surgeon and he told me I needed a swallowing study!!  Finally, five days later, my infectious disease doctor insisted my oral surgeon move my surgery up, and when he made his entry into my sinus, he said he stumbled into the worst infection he had seen in years.  There was a infectious mass sitting in the back of my sinus that was creating "referred pain" in my throat.  He ended up having to debride and remove the back portion of my maxilla, remove a tooth and debride out my sinus.  this was back in May.  Since this started, I have had a total of 10 surgeries, 6 PICC lines, HBOT, three teeth removed, four root canals, and a partial resection of my jaw.  I feel so much better despite being beaten up for the past year.  I am still having some pain, and I am scheduled for a tag white cell study in two weeks to see if the infection is the source of the pain or if it is muscle-related or scar tissue.  I only wish, I had been a better advocate for myself early on.  I trusted too many doctors telling me to move on with my life and that my infection was gone.  I knew it wan't gone and felt so defeated when they would tell me my pain was "psychogenic," "all in my head" or that I needed an antidepressant to feel better.  

My best advice for you is to get yourself up to the Mayo Clinic in Rochester, MN.  I only wish I had gone earlier.  I finally feel like I have a great team taking care of me and am so close to beating this dang infection.  I see Dr. Kevin Arce but have also read a post on here recommending Eugene Keller.  I highly recommend Dr. Tosh with the department of infectious disease.  He hit the nail on the head, and knew the resistent bug causing my osteomyelitis that Emory University was not able to grow in their lab because it is difficult to isolate.  He knew it was Actinomyces before Dr. Arce's bone and sinus culture just from my patient history.  You need a team of doctors managing your care that all work under the same roof. For over six months, I saw doctors from different hospitals, and getting them to communicate regarding my case was a nightmare.  Once at Mayo, I finally felt like I could just be a patient and let the doctors communicate regarding my care.  I live all the way in Atlanta, GA and have made four trips up to MN (driven three of them!) because it is worth it!  I now have my OMS, infectious disease doctor, an immunologist, hematologist, endodontist, ENT and pain management doctor all working on my case.  My best piece of advice, is to be persistent.  If you cannot get into Mayo for a few weeks, call back every week to see about cancellations.  Or, you can just show up (which not a lot of people know) and opt to be what they call a "checker patient" where you sit in their waiting room for a slot to open up if there is a cancellation or a no-show.  I wish you luck and keep me posted.  I hope you get to feeling better soon!!

Reply
Jeanne M., Community Member
3/19/12 3:32pm

Bridget - I would like to visit with you via e-mail regarding your experience with the Mayo Clinic.  My e-mail address is hesler3986@msn.com.  I hope to hear from you soon.

Reply
laurence, Community Member
4/11/12 12:59pm

hi everyone

im so glad i found this site i am one of you without diagnisis i know all to well i have been suffering for years  im on a quest for removing mercury and checking for cavitations ............omg if anyone has any referrals in southern calif los angeles or valley area please post.................. im currently seeing a bio holistic dentist dr vern erwin... not sure whats going to happen yet and how i can afford all this .. im thinking of mexico ??????????

plz feel free to email me at larzmx@gmail.com

 

thanx laurence

Reply
Marie, Community Member
5/ 8/12 3:34am

Dear Bridget,

I apologize for responding so late to your previous post further above.

I read your "story" and feel we have a lot in common, like the majority of us who have run around from doctor to doctor, all of them insisting it is all in our heads and to simply move on in life.

I had my left mandible resected in October 2011, from behind the wisdom tooth site to my lateral incisor. It was a very emotional day for me, I cried on the operating table before the anaesthetic took over. After all those years of running around and being accused of being a lunatic or hypochondriac and after finally being diagnosed and treatment failing to work, D Day had arrived. I ended up being on IV antibiotics for approx. 14 months in total over a year and a half, and oral antibiotics in between. I lost track of how many surgeries I have undergone and hopefully have only one more ahead of me - the final reconstruction surgery.

How did your white blood cell test go? Is your infection now cured after having the site resected? I have days where I feel the infection is still alive in the front amputated end and it scares me. I know that after resection surgery, I asked my oral surgeon about what she saw in there and she said the bone had irreversibly changed to a greyish-pink colour, and that the front end remains a question. The problem is there is some sclerosis in the chin area as well, which would be very difficult to reconstruct if resection were to include that area. I am afraid the post-surgery antibiotics may have had problems getting to the amputated end through the sclerotic bone. I am hoping the pain is just scar tissue or muscle. But its just that gut feeling we all have when we know there is an infection going on. In the past, i suffered from sinus problems when my actinomycetes were at their peak. And the CSO on my skull would occasionally cause head pressure. I do not wish to have anyone poke around that again in my life. I am just hoping the IV ATB sorted that part of my CSO out.

Anyway, I am just 6 months post-surgery, not on any meds and just trying to live life as best as possible. I am not even in touch with my oral surgeon - we had a disagreement one-week after surgery and so I discharged myself the following day. It seems you are in good hands, professional doctors with professional conduct. My oral surgeon seemed annoyed after surgery by my questions and simply blew up on me telling me how much time and money i have cost her (the system out here is different than the US) and after hearing out her insults, I am finding it hard to continue cooperating with her. I have only had one follow-up so I have no idea whether the pain is legit or not. I should get a follow-up CT done, worst case scenario I will get it done privately, not covered by insurance and her colleague look at it. Will you have your resected area reconstructed? Provided all goes well, I should start giving it some thought soon and undergo reconstruction, ideally, this autumn...if my oral surgeon will care to see me. There is only one hospital and one person (plus an assistant) dealing with OS in this country. Not many choices.

I feel the biggest mistake in my case was never really pinning down why it all happened. Perhaps the underlying problem is still around and the amputated ends do not have a chance in healing infection free as my body is not able to fight off any intruders. Was it my EBV at the same time as my wisdoms were extracted 8 years ago? Or is it something else that has been overlooked? Or hopefully, the better scenario would be that any discomfort I now feel is simply muscle damage and scar tissue.

Sorry for my ramblings, I hope they make sense.

Take care and I would welcome an update:))

Marie

Reply
Bridget, Community Member
6/20/12 11:00pm
Marie, Sorry to hear about your situation with your OS! You need to be under the care of someone, and someone who listens to you over any test result. Unfortunately, my tag white cell study in Feb was positive indicating the infection spreading forward and towards the palate. I was given the option to either have the left upper jaw resected to the midline (front tooth) including the palate, wear a prosthesis to cover the defect for 6 months before they would attempt Micro vascular surgery grafting bone, vessels and skin from my leg OR I could try one last rund of conservative yet aggressive medical therapy. I opted for the latter. I returned to Mayo the middle of Feb to have a bone biopsy to confirm if the Actinomyces was still present or if any new bugs had grown. They were only able to isolate Strep viridans. I then returned home, had a port placed in my chest, and began what is now my fourth month of daily therapy. I am on IV and oral antibiotics, receiving monthly high-dose IVIG, weekly white cell replacement shots to support my immune system and bone marrow (which both take quite a hit on antibiotics and fighting a long-term infection like this), and I restarted hyperbaric oxygen therapy for 40 dives to treat any remaining Actinomyces not cultured and to help revascularize the jaw bone that had been cut on so many times. I am so very happy to share that I returned to Mayo the first week of June, and both my tag white cell study and indium scan were NEGATIVE!! Th infection is gone. The pain is getting better each day. I unfortunately needed an additional tooth extracted while there because it had fractured from extensive root canal therapy due to blood supply loss with multiple surgeries. I am sadly now missing four teeth on my left upper jaw, but I met with a prosthodontist last week who will be fitting me for a Valplast (similar to a partial denture but flexible and no metal). I will also be discussing reconstruction of the area in the months to come. I have two more weeks of IV antibiotics, followed by 6 months of orals, will continue the white cell replacement shots until my bone marrow recovers, and might need to remain on IVIG for life. At this point, I can handle that. I am so glad I fought until I found the right surgeon. No matter what the scan has ever shown, he always asks, "but tell me how your pain is," and he goes from there. It is hard to find a surgeon and team of doctors who will continue to fight until they get it right. I only wish I lived closer to Mayo so that the trips there didn't take so long. I encourage all of you to NOT ignore your pain until you believe in your heart that it is not infectious. I still struggle with pain today, but a lot of it is postoperative from the extraction and the excision made to examine the bone a few weeks ago. But that heavy, hot, pounding pain that would put me in another world is at rest for now... And I hope forever! Reply
fatface, Community Member
12/17/12 2:35pm

Hi Marie

I have not heard anything from you latley how are you?

Tom (fatface)

Reply
Marie, Community Member
12/17/12 5:54pm

Hiya fatface, and all,

 

How are you doing? Any progress?

Thanks for checking in on me:) I just had a biopsy done of the amputated ends and I am clean of any sort of furry friends:) However, I ended up with sepsis again thanks to the dodgy hospital staff hygiene out here. I was discharged home the day after the biopsy and had fevers and the shakes for a week (I had moments I thought I would die when I had tachycardia and was sitting in a freezing cold shower) while on antibiotics that were apparently not the right kind and thus I had to go back in to hospital and have my subcutanous port removed. Not a pleasant experience and I have to admit I was very ticked off by yet again becoming a victim of neglected post-operative procedure and poor hygiene. Anyway...I am pleased as punch the results are negative but I still have days where I have extreme pressure in the titanium plate It feels like it could literally pop out of my mouth and it seems it might be due to hypertrophic bone formation. I am a bone former. So, I managed to get rid of the bacteria but not the pain! In terms of reconstruction, I am still waiting - I will make my mind up in 2013 as to whether or not I want to undergo the horrid operation next autumn or not.

Take care and keep us up to date. I hope everyone is doing well or fighting as best as they can. Enjoy the holiday season!

Marie

Reply
fatface, Community Member
12/20/12 12:50pm

great to hear things are moving forward for you.

My new dr. says i have sterile ostemyelitis(spectrum of a syndrome called:SAPHO(synovitis,acne,pustulosis,hyperostosis,and osteitis).So on DEc22,23,24 they will give me 60 mg Pamidronate hope it helps.

Merry Chridtmas

Tom

Reply
Kim, Community Member
2/15/13 1:48am

Hi Marie:

 

I was diagnosed with Chronic Osteo of the lower right jaw (after 6 years of being told I was imagining pain) & recently had a debridement surgery at UCLA.  I was told that I may need to get a titanium jaw replacement and then a bone graft made from bone taken from my hip.  I am really scared.  How painful has it been for you?  Did you get your bone graft jaw replacement yet?

 

I hope you are doing well and look forward to your response.

 

K

Reply
Marie, Community Member
2/17/13 1:49pm

Dear Kim,

You have to consider the pluses and the minuses.

My list of pluses may help you make your mind up:

- almost everyone on this board who has kept their affected bone intact, only undergone decortication and debridement almost always ends up with a relapse.

- most board members who have undergone resection slowly drift away from here as they no longer have the need to seek “help” and “advice” – they are “cured” and moving on in life.

- white blood cells and other inflammatory markers are all within norm now – no more mild temperatures as well.

- pain is gone (but so is my mandibular nerve), yuppee!!! No more nausea from bacteria and no more incredible suicidal pain!

- no more running around from doctor to doctor listening to how you must be nuts and that it’s all in your head.

Now the minuses:

- my mandibular nerve had to be resected as well. The chronic infection caused it to live a life of its own and thus it had created several new branches. It was beyond hope of rescue, but others I met in hospital had theirs saved (it takes up to 2 years for it to recover).

- without the mandibular nerve I naturally have difficulties with controlling that part of my face (lips are annoying, or when I laugh and my left side sags). It makes me fell very self-conscious and sometimes even bitter…still have my bad days mentally with accepting the damage that was caused by the neglect of medical practitioners to listen and act in time.

- reconstruction is a long process… I am still not decided when to go ahead with it. Where I am living now and insured they do not know how to do nerve grafts yet. If I can get back home within a couple of year and wait for my free medical insurance to kick back in, then I have a contact for one of the top in the city and he said that he does nerve grafts in cooperation with neurology. Nothing new inCanada, unlike here.

 

In general, I would advise you to go for resection, if you have been through hell and back with CSO, have lost years of your life already and treatment has failed. My treatment failed to rid me of all the bacteria and the bone was irreversibly damaged. So it was a no-brainer decision for me to say “get rid of it” to my oral surgeon. No regrets now. My biopsy of the amputated ends from last November (1 year post resection) came back all negative. However, I am a bone-grower, hypertrophic person, so I occasionally experience pressure due to the fact that the amputated ends are “growing back”, thus the plate and screws feel like they are ready to explode.

I hope I have helped you and haven’t confused you.

Take care and let me/us know what you have decided for.

Reply
Smiley, Community Member
4/ 5/13 6:57pm

Marie,

You seem to know alot. I have been dealing with this for over 8 years.  Is there an antibiotic that seems to work better overall than others?

Reply
Smiley, Community Member
4/ 5/13 6:58pm

Marie,

You seem to know alot. I have been dealing with this for over 8 years.  Is there an antibiotic that seems to work better overall than others?

Reply
Marie, Community Member
12/17/12 5:54pm

Hiya fatface, and all,

 

How are you doing? Any progress?

Thanks for checking in on me:) I just had a biopsy done of the amputated ends and I am clean of any sort of furry friends:) However, I ended up with sepsis again thanks to the dodgy hospital staff hygiene out here. I was discharged home the day after the biopsy and had fevers and the shakes for a week (I had moments I thought I would die when I had tachycardia and was sitting in a freezing cold shower) while on antibiotics that were apparently not the right kind and thus I had to go back in to hospital and have my subcutanous port removed. Not a pleasant experience and I have to admit I was very ticked off by yet again becoming a victim of neglected post-operative procedure and poor hygiene. Anyway...I am pleased as punch the results are negative but I still have days where I have extreme pressure in the titanium plate It feels like it could literally pop out of my mouth and it seems it might be due to hypertrophic bone formation. I am a bone former. So, I managed to get rid of the bacteria but not the pain! In terms of reconstruction, I am still waiting - I will make my mind up in 2013 as to whether or not I want to undergo the horrid operation next autumn or not.

Take care and keep us up to date. I hope everyone is doing well or fighting as best as they can. Enjoy the holiday season!

Marie

Reply
Yvetta, Community Member
6/ 9/12 10:05pm

Hello,

I am so trilled to hear that somebody got it right. I would love to talk to you. I guess you understand the frustration. I am not well and had several surgeries trying to fix my jaw and dealing with days not be able to make it out of bed. Please email me yvettausa@gmail.com It would be very nice to hear your experience and recomendations. I will cross the country to give me a relief.

 

Yvetta

 

 

 

Reply
Yvetta, Community Member
6/10/12 3:23pm

Hello,

I am so trilled to hear that somebody got it right. I would love to talk to you. I guess you understand the frustration. I am not well and had several surgeries trying to fix my jaw and dealing with days not be able to make it out of bed. Please email me yvettausa@gmail.com It would be very nice to hear your experience and recomendations. I will cross the country to give me a relief.

 

Yvetta

 

 

 

Reply
LJAmick, Community Member
3/ 2/12 5:40pm

I do.

Reply
LJAmick, Community Member
3/ 2/12 5:40pm

I do.

Reply
JazminM., Community Member
6/18/12 12:35pm

hello wendy. my name is jazmin and im 22 years old. i have been suffering from osteomyelitis of the mandible since i was 9 years old. was a support group ever set up? people dont understand the pain i go through on a regular basis and it would be nice to talk to other people who have this condition. please email me and let me know.

 

Bowlinqueen22@yahoo.com

 

thanks,

Jazmin.

Reply
camillejones, Community Member
8/ 5/12 7:43pm

ive dealt with chronic osteomyelitis of the jaw for years!!! i've already had a 2nd surgery.  and more is soon to come, because of the growth.im in constant pain, but mostly in my hips and back. 

Reply
Teresa, Community Member
10/20/12 6:22am

Dear WendyO.,

 

I was diagnosed with osteomyelitis of my jaw a few months ago. I broke up the whole right side of my face in a car accident three years ago. Ever since then my teeth/face has hurt. I had a bunch of root canals and dental work done but my teeth kept getting worse. Now I am missing half the teeth on the bottom and am planning to have them all pulled and get dentures. The pain was so bad I actually pulled three out myself. I am very ashamed to smile or even talk because I look like a gap-toothed yokel.

 

The issue hindering me getting ready for dentures is that every time I have a tooth extracted it sets off the infection again. I do not heal right and the bone stays exposed. I already had one skin graft to cover the bone on the bottom.

 

This condition is just miserable. I feel like it has taken over my life. It is hard to think about anything else because I am always hurting. And, my teeth are so gross and embarrassing that I want to avoid people. I do not have insurance right now and am lucky to have gotten into a free program in my area for low-income people. However, the program is by no means equal to the level of care one gets with insurance.

 

I am just finding myself completely frustrated. I have pain medicine but I do not want to need narcotics all the time. I am wondering if you or anyone reading this knows about nerve blocks for pain. I would also like to hear from anyone with chronic osteo who had all his/her teeth pulled and got dentures. Also, I would like to know if anyone has plates or screws in his/her jaw or face that hurt. I have a ton of questions and I am just so relieved to have found this message board.

 

Please, anyone with information to share feel free to contact me. I am desperate to hear from others. I have yet to meet anyone with this condition. Now I have you folks. Thank you!!

 

Teresa Allgeier

tallgeier5@gmail.com

Reply
carol a, Community Member
10/23/12 12:56am

My husband was diagnosed with Osteomyelitis of the Mandible a year ago after his wisdom teeth were removed.  He had 2 debridment surgeries, PICC line, Hyperbaric, and is now getting a neurostimulator to help with the chronic jaw pain.

 

Our medical bills are overwhelming!  We have insurance, but our "part" is still so much!  Did anyone see medical relief or malpractice after getting Osteo?

Reply
David Smith, Community Member
11/ 3/12 4:14pm

Hello Wendy, I MUST SAY < I have been extremly frustrated with the care of my Osteoyelitis lower jaw infection. As I have the Veterans clinic and I got this infection after the denist pulled 5 teeth and DID NOT Prescribe me any knind of antibiotic. So I Can't get any dental work done by the V.A. and My VA doctor had me do lab test that all showed normal as most all of the bone infections are in the bone and don't show any high white blood cell count, So I was refered back and fourth from my dintist and my doctor at the VA. (My Dentist is a privit pactice) So I felt like I was a ping pong ball going from one to the other and the two wern't talking to each other. So during weeks of begging for and antibiotic medication, You would think that I was asking them for HEROEN.  So after weeks of them both sending me back to the other, My infection was just growing bigger and now I'm on I.V. Antibiotic medication for 6 to 8 weeks. And Im looking at having to have reconstrutive surgery and I don'y have the money for it so I have to get V.A. to do it and they are still calling my bone infection dental work that I don't qualify for.  I contacted my senator and he sent me a reply from the VA saying my blood work didn't show any infection)s)  As Most of the time, the booldwork shows normal But the Cat Scan showed all sorts of dead bone fragments and I have to get those removed and now that they were piddleling around not helping me by porescribing antibiotics It Seem I now also will need to have all the dead bone removed from my jaw bone as well and then recontructed with ether bone graphs or metal plates  And I can;''t seemnm to find that I THOUGHT When 5 teeth had to be extracted that he shouldhave put me on an antibiotic So this infection would have never started in the first place. Do You know of any good lawyer?  Almost a month I was begginging them both for an antibiotic but both would say Im under the care ofthe other and won't over ride what they are doing. When in all truth They were not even talking to eachother and Did nothing so my infection just grew while I was having to behg. I had to take a loan out to go see an oral surgen and Thats The only way I got put on oral antibiotic meds.  I had to prove to them it was a lifethreatening problem  And they still haven't made a plan for treatment  As I didn't get kicked oin the teeth in some war.  Would loveto hear from you as I may not ever see this site again, So my email address is (silly)  use2bawildchild@gmail.com and my mame is Dave. Thanks for your input , I just want dotors to understand that CBC and other bloodwork can come back looking normal  when you have Osteoyelitis  also spelled as Osteomylitis without the "E" after the Y.  Look forward to hearing rom you , Dave Smith

Reply
fatface, Community Member
12/14/12 2:06pm

hello again

More rounds of treatment nothing working

I will be starting Pamidronate 60mg/day for 3 days

have any of you tried this treatment calling it a SAPHO

syndrome.Hope all are the best theycan be and merry christmas

 

Reply
Mclax2, Community Member
10/26/13 5:51pm
Hi all, My story is eerily similar to most of yours. I had a cyst removed from my mandible in December 2012 and then the infection set in soon after. I was swollen / hardened in the right jaw and had trismus for months. I was originally diagnosed with Actinomycosis of the Massetter and put on iv picc line for 8 weeks and Oral antibiotics for about 4 months. After removed from the antibiotics it took about two months and I had a full flare up again in September 2013. I was hospitalized again and had my 4th MRI this past year. Finally, I had a Gallium and then a Technesium scan. I am now diagnosed with Osteomyelitits of the jaw. After reading all of the posts I have experienced much of what many of you have. I thought I was the only person on earth to suffer from this till I stumbled across this site. I have seen countless doctors and experienced many blank stares about what the best options are for me moving forward I am in the New York City area and am looking for more doctors near by with experience and expertise in dealing with this specific illness? Any help would be much appreciated. Reply
Osteoman, Community Member
11/26/13 9:51pm

Hi I am also new here. I contracted osteomyelitis last Dec2012. I have vertebral osteomyelitis, I was getting a posterior cervical fusion. I went through the 7 weeks with the PICC line in skilled nursing. I have also been on 2grams Keflex since March 2013. I write because I feel I am having a recurance of osteomyelitis. I havd developed some dental and jaw aches rather quickly. About my neck. The suregon does not give me any hope of pain relief from the "by the book" operation to remove metal pieces that harbor the infection. I have decided not to have the operation. My infectious disease Doctor supports my decision. I am having so many symptons (leg and knee pain,ankle swelling, along with my new dental issues and my constant neck pain). I am a 58 year old man and I will say I am getting tired from dealing with this disease. My wish is for the medical world to get it together and at least confirm I am having a relapse. I wish all the best,hope to hear from you.

Reply
Osteoman, Community Member
11/26/13 9:51pm

Hi I am also new here. I contracted osteomyelitis last Dec2012. I have vertebral osteomyelitis, I was getting a posterior cervical fusion. I went through the 7 weeks with the PICC line in skilled nursing. I have also been on 2grams Keflex since March 2013. I write because I feel I am having a recurance of osteomyelitis. I havd developed some dental and jaw aches rather quickly. About my neck. The suregon does not give me any hope of pain relief from the "by the book" operation to remove metal pieces that harbor the infection. I have decided not to have the operation. My infectious disease Doctor supports my decision. I am having so many symptons (leg and knee pain,ankle swelling, along with my new dental issues and my constant neck pain). I am a 58 year old man and I will say I am getting tired from dealing with this disease. My wish is for the medical world to get it together and at least confirm I am having a relapse. I wish all the best,hope to hear from you.

Reply
Marty goldberg, Community Member
6/14/14 8:56pm
Hi,I had osteomyelitis and had my left mandible replaced at ucla,a 12hr surgery. My pain was constant and awful. Reply
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By WendyO., Community Member— Last Modified: 06/17/14, First Published: 11/15/08