Chronic Osteomyelitis Of The Mandible (Jaw Bone)

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???

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

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.

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

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

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

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

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

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

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

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

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.

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;)

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;)

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

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

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

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

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!!!

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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 ~

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?

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?

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.

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.

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?

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

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

What did you want to talk about?

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

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~

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  

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

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

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.

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

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.

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!

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

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

Jane,

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

Jeanine

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

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

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

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

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

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. 

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 

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.  

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

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.

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

Hey there CJC!

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.

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.

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...

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

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

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~

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!

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!!!!

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

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!

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

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

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:

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: