Saturday, August 23, 2014

Friday, February 05, 2010 pianogirl, Community Member, asks

Q: Total jaw joint replacement - post surgery

I am a little over one year post surgery for total jaw joint replacement. I have experienced ear pain almost constantly since. Has anyone else had something similar?

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Answers (5)
Tim, Community Member
2/ 5/10 10:56am

Yes.  I am missing joint now as i had it taken out.  If you search yahoo and the web for tmj support groups you will find allot of info. There are alott of ligamnet etc under jaw and pain sometimes feels like ear and maybe is not.  I had tubes put in ears years ago before surgery.  Then again you might have an eutachian tube problems but nore than likely ligament pain etc. Talk to your oral surgeon and research as mentioned. Tim

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pianogirl, Community Member
2/ 5/10 11:08am

Tim, I think you may be right. I saw my family doctor this week to make sure I did not have an ear infection or wax buildup. Both ears were fine, so it has to be something else. I see my surgeon in two weeks for follow-up and will talk to him then. 

 

You say you are missing a joint, so what did you have, a conoidectomy? I had that done on one side but it offered no relief. Did you in fact have the titanium joints inserted or are you just dealing with the pain?

 

 

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Tim, Community Member
2/ 5/10 12:05pm

I had a joint replacement on one side and open joint on the other.  Was having problems

so had the joint removed and it has caused me alott of problems.Have been without since 2002. I am now waiting to try to go to milwaukee from Iowa to see an oral surgeon. Maybe double joints?

 Have had spinal surgery and problems from that,  need knee replacements etc. I was hit by a car in the service in 1974.    I worked until 1999 and then disability from tmj. back started getting worse etc. My one leg is a little over 1/2 inch short as i had a compound fracture from accident.  I went for ever with different diagnosis from tmj.

Had 3 sinus surgeries, tubes in and out of ears.  The average tmj patine goes to 7 docs before they get a proper diagnosis.  Dr Shankland wrote a book called, Tmj the great imposter.   Go to www.drshankland.com  Health and blessings,  tim

 

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pianogirl, Community Member
2/ 5/10 5:47pm

I can't imagine just having a joint on one side. Your health problems sound similar to mine. I was born with a congenital bone disease which resulted in a below knee amputation of my right leg in 1967 when I graduated from High School. I have had countless other medical problems, but none of them have caused me the pain and suffering the tmj has. A family dentist tried to remove the wisdom teeth on my left side and ended up dislocating my jaw. That was in 1969. It wasn't until 16 years later (when I could no longer eat any solid food) that I actually found out what was going on. By that time, I had virtually destroyed both joints. After I had jaw augmentation in 1985, I had about 10 okay years before the bone loss began. I am not 60 and so fed up with the costs and pain of it all. I hoped this jaw replacement would be my miracle, but it is not. I will remember you in my prayers. It sounds like you suffer greatly and I can relate to it. I try not to complain to anyone because unless you have been there, you can't understand.

 

Blessings to you also.

SuzyQ

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Tim, Community Member
2/ 5/10 6:52pm

Will also keep you in prayer!!    I am going to be 58 in april and on vets disability and social security disability.    Blessings,  Tim

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Pat, Community Member
6/15/12 9:55pm
Hey Suzy,I too talk to no one about my problems. You are right unless you experience the pain you cannot understand. Good luck with our jaw replacement. I had both sides done at the same time. I fully trust my doctor. I had 3 surgeries prior to joint replacement. My doctor said this was my only chance to relieve headaches and jaw pain. Eleven years later I am worse than I was before the jaw replacement. You are in my thoughts and prayers. Good luck. Reply
Tbird10, Community Member
7/26/10 12:50am

I had titanium jaw joint replacement and had hearing loss immediately noticeable upon waking up from surgery.  I was told it was eustachian tube dystunction. 14 months later, I have been diagnosed with sensorineural hearing loss involving the cochlear on the side I had the titanium joint implanted.  I do not hear any high pitches in that ear anymore.  I went to several ENTs and 2 oto-neurologists who all said the same.  However, many get hearing loss after weight loss.  A friend of mine has cancer and has lost alot of weight, began to have hearing loss, etc.  Her ENT and oncologist told her there is a fat pad somewhere between the ear drum and middle ear (?).  If you loose alot of weight, there's a chance that fat pad gets reabsorbed causing some hearing loss.  He told her to try to gain some weight.  Maybe that's what's happening  to us who are also losing weight due to a liquid/soft food diet for so long!    Who is a good titanium TMJ doc?  A friend has to have some surgery and I'm not sure I want to recommend my doc.  Anybody had any successes with their docs and titanium jaw joint replacement?

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pianogirl, Community Member
7/26/10 9:15am

All of this certainly sounds familiar. I also ended up seeing an ENT and he told me I would have to live with the ear pain. Both ears feel stopped up. He did remove dried blood and lots of wax which I will probably have to have done every few months. The ear canals are so small now that my regular dr. can't flush them properly. I had a wonderful surgeon who did my replacements. Dr. Daniel Spagnoli located at Lake Norman north of Charlotte, NC. He is first class and I think he did as much for me as could be expected. I weigh about 105 lbs and will never be able to gain any weight. I still can't eat much because it is just too painful. Thank you so much for sharing. No one can understand who has not had to deal with tmj pain. I just hope the joints I now have will last until I die because I don't think I can go through this again. My advice to anyone who is considering having joint replacement get several different opinions. It is a major deal.

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Tbird10, Community Member
7/26/10 12:15pm

Hi, thanks for your response.  How long ago was your surgery?  I hope my TMJ (titanium) jaw joint lasts a lifetime, too, because this surgery is very difficult and it was not thoroughly explained to me regarding the recovery.  I have been unable to work and had to take a pay to go on disability for awhile.  If your jaws are still painful, I was wondering when your surgery took place?  The tendons/ligaments/muscles in front of TMJ are sore and it also affects my neck which causes headaches.  My surgery was about 15 months ago and it's been a "major deal" as you stated.  So, what did you like about Dr. Spagnoli?   Did he do titanium jaw joint replacement or rib bone, etc.?  Again, thanks for your response.

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pianogirl, Community Member
7/26/10 7:53pm

I had my surgery on December 31, 2008, so I am 19 months post-op. Did you go for physical therapy immediately after, like 7 days after surgery? I thought I would surely die, but it did help a lot and I finally was able to open to what my Dr. wanted. Dr. Spagnoli did the titanium joints. The only bad thing about him is that he is not affiliated with any insurance company, therefore he was considered out-of-network for me. I ended up paying $15,000 out of pocket. My hospital bill was completely covered. Did you have to wear braces prior? Wearing them was my third time if you can believe that. I can't believe I have any teeth still in my mouth. My teeth also hurt a lot. I'll probably lose them all. Sometimes even my scalp hurts. Did you have the pain pumps after? I would have died without them. Like I said before, no one can relate to this but someone who has gone through it. Hang in there. Thanks for sharing. It helps to know I am not alone.

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Tbird10, Community Member
7/27/10 10:28pm

My doctor gave me some facial exercises to do at home, which helped but I ended up going to "facial reanimation therapy" because when I woke up from surgery the left side of my face was paralyzed. I was mortified. After months of therapy, I still have some lingering palsy and muscle/nerve weakness but not paralysis.  I still have difficulty swallowing and hearing. I lost hearing mainly out of my left ear, sensorineural hearing which has affected my cochlear. The ear problems gave me vestibular problems, too (balance, vertigo, dizziness, nausea, etc.). Then I got infections which lead to bone marrow problems.  It's been a medical nightmare. I have to have immunoglobulin therapy monthly at a cancer center, I'm borderline leukemic now because of my bone marrow getting worn out after all of the post op infections. But, I did have a pain pump. It was great. I now have neuropathic pain in my lips, teeth, gums and chin.  We're trying to figure out if it's trigeminal neuralgia or something else. More medical tests, ugh. I had to pay $30, 106 out of pocket because my doc is out of network. I've ended spending in 2009 almost $70,000 in medical expenses because of the surgery.  It's been a quite a journey!  I don't know too many people who haven't had problems but I think mine is quite severe, unfortunately. I keep in touch with one other lady who had both of hers done after me.  She's having problems with her bite, pain, hormonal changes, etc.  I did wear braces pre and post op. My teeth look great but not that functional due to bite issues.  The tops of them are very painful so I cannot chew anything with consistency because the pain shoots into the gums. My scalp doesn't hurt but I get alot of head/neck aches now and go to PT for that.  I guess we all have to hang in there!  You are not alone.

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katie punnett mcloud, Community Member
12/ 5/10 1:20pm

I highly recommend Dr. Keller at Mayo Clinic in Minnesota. Don't be intimidated by the fact that it's Mayo Clinic. They are not for profit and take most insurance. Dr. Keller is amazing. I had given up on life and thought it was just going to be an endless cycle of pain and migraines, vomiting and soup for the rest of my life until my mother found out about his work at Mayo. I don't have insurance, so my parents paid upfront, which wasn't cheap. It's been a month and I can tell I have a whole new life ahead of me now. I can think clearly finally! I spent years in pain, needing and not getting the pain treatment that I needed, then being doped up to deal with it once I got to someone who finally recognized how awful and painful it was. Dr. Keller did a partial joint replacement on me a month ago and yesterday was the first day of no pain meds that I have had in months. I am elated! I wish the same for everyone with TMJ. Please do a search on Dr. Eugene Keller at Mayo and look into him. Best wishes for good health and no more pain, Katie

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LeAnn, Community Member
1/10/11 7:09pm

 Hi Katie,

 

I have had partial joint replacement also.  I now am thinking about having the ball joint replaced now.  I have headaches every day and my face aches.  I am having a problem making my mind up to do it or not.  I had my last jaw surgery about 7 years ago.  I have thought about Mayo Clinic but right now just going to a doctor in Toledo, Ohio.  I feel the same about being on so much pain medicine.  Reading stories on the internet has just scared me even more.  Thanks for the information on your doctor, I will have to look him up.  Glad you're doing so well.  LeAnn

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katie punnett mcloud, Community Member
1/10/11 8:05pm

Best of luck, LeAnn! You are right to be scared after all the stories on the internet and from dentists and doctors. I paid 18K for three years of tmj treatment with my dentist and was told if I resorted to surgery, she could no longer help me. I suffered and suffered and she told me the adjustments on my splint should be enough (along with the cranial osteopath I was seeing at her suggestion) and cut me off without anymore pain meds. It took me months to find a pain management clinic that would take me. One told me, the day of the appointment I had waited 3 months for, that they didn't treat TMJ patients, so not to bother coming! My dentist never once thought about why I was still in pain, or that her treatments might not be effective. She didn't order anymore ct scans, or do any xrays. Turns out, if she had, she would have seen that my jaw joints had become bone mush, all the while she's telling me that her treaments are successful. Bone mush! (My technical term for osteoarthritis.)

 

I was still able to have the partial joint replacement. There is only one piece to it, so there is no chance for it to break. It's worth sending your ct scans over to them. If they can't do anything for you, they won't offer you an appointment and waste your time. At the very least, before you have that condyal removed, I would get a second opinion from another surgeon, even if it isn't from Dr. Keller. A friend of mine had surgery for earlier stage TMJ at the University of Ohio, around the same time I went to Mayo. You might contact them? I know Ohio is a long state, but it might be worth the drive.

 

Tomorrow will be 9 weeks since my surgery at Mayo and I have not had a single migraine since! I wish you the best outcome! - Katie

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katie punnett mcloud, Community Member
12/ 5/10 1:12pm

Have you guys thought about Mayo Clinic? You might consider sending your ct scans to them. If they can help you, they will let you know. They take most insurance. I just had surgery there about a month ago and it was amazing. Dr. Keller is the Jedi master of TMJ surgeries. I just thought I might suggest this. Good luck to you all. I know the pain is awful and the search is unbearable. Katie

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Nancy, Community Member
4/ 5/10 7:48pm

I had total jaw replacement in 2007.  I have had constant severe pain in my right joint and face which continues down my neck.  CT scans of my face show my implants are perfect.  I have neurological pain which causes my face to feel as if it is frozen and I have to excercise my face to talk properly when it happens.  This replacement came after I had had multiple surgeries throughout the years and both jaws kept failing.  My first implant was a Proplast which had to be removed due to recall.  I take Vicodin which helps a little.  I have been to pain management and had multiple procedures which have not helped at all.  My last resort was to see a Neurologist at Barrows Neurological, the doctor said he could not help me.  I have filed for disability due to this excruciating pain. 

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pianogirl, Community Member
7/26/10 9:20am

Nancy, sounds all too familiar. I also filed for disability and got it. I wish I could take Vicodin but can't take any kind of pain meds. They all make me so sick. So I just have to grin and bear it. I wish I could be more positive, but I think we have what we're going to have.

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Tbird10, Community Member
7/27/10 10:34pm

I'm in the process of filing for disability.  I've been with the same company for 20 years but I cannot work now.  I tried one time going back but only lasted 6 weeks. Travel is involved in my job and lots of after hours work.  My body just could not handle it after the problems with the TMJ and all of the post op medical conditions it caused.  How did you get disability?  What doctor helped you get it?  I see so many doctors now I wasn't sure who all to put down on the paperwork. I'm just in the beginning stages.  It seems time consuming.

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Tbird10, Community Member
7/27/10 10:46pm

Hi, I have alot of oral/facial pain that involves my lips, teeth, gums and chin that happened post op TMJ surgery.  On the latest MRI and MRA it showed that I have some "prominent vascular loops" that are very close to the trigeminal nerve. They may even be touching it.  I've seen 3 neurologists.  They throw all kinds of drugs at me but they all put me in another world.  I do not want to be a zombie on top of all of everything else. Lortab and Oxycontin has helped take the edge off.  We are trying a stellate ganglion branch nerve block next week, just a diagnostic dose to see if it will stop the pain for a couple of hours.  I have seen a neurosurgeon and one more in 2 weeks.  They are both gamma knife (laser) experts. We'll see what they have to say.  The first one thought I had atypical trigeminal neuralgia but did not want to do the gamma knife or jannetta decompression surgery on me because he is hoping that with more healing time, I might get better.  It's been 15 months of pain and it's not better.  I have an appointment up at the Mayo Clinic in September.  We'll see what they have to say.  I know I don't want to live with this chronic pain forever if there is "something" out there to help that won't cause terrible side effects.  I'm still searching.  I'll let you know what I find out.  Let me know if anything helps you in the meantime.  Have you tried amitrypoline?  My uncle is an anesthesiologist (pain management) and he said that some people get relief with rinsing 3 times a day with 50/50 water/hydrogen peroxide in addition to Delsym Cough Syrup.  I tried it and it worked just as well as my pain meds, which only take the edge off.  I get that 'frozen' feel, too.  Get the book called "Facial Fitness."  It has very good facial exercises in there for TMJ, Bell's Palsy and accident/injury facial patients.  There are facial massages in there, too.  Did your neurologist suggest Tegretol, Lyrica, Neurontin, Cymbalta or anything like that to tone down hyperactive nerves in your face?  Good luck.  Let me know what helps you when you find something.

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Chris, Community Member
8/19/11 5:17pm

I am just curious if you have had any more treatment for the trigeminal neuralgia? I had total joint replacement on both sides almost 1 year ago.  one side looks deformed still but no pain, the other side looks normal but hurts like hell.  My family doc and my neurologists are pretty convinced it's trigeminal neuralgia.  taking tegetrol and lyrica and loratab to barely function.  The gamma knife seems to be the direction they will go, but wanted to see how you are doing with all this.  Also, has anyone thought of talking to you about legal issues with the oral surgeon? I am thinking of talking to a guy I know, but I hate the thought of going down that road.

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tmj sufferer, Community Member
1/11/11 1:25pm

hi from a total jaw joint replacement recipient... done in 
 Dec.,2008.....Last week I had to have a cyst removed from inside my left ear  close to the joint that has given me problems ever since the jaw joint replacement... hearing loss is evident in both ears...  and pain...  wondering if this is connected ... Have had 5 tmj surgeries;   didn't need the left joint done but my oral surgeron insisted on it.....on my last surgeries-complete articifical joint... left side stays swollen and is irregular in shape compared with right jaw line. Also I have pain and on left side and have lost teeth alignment compared to how well my teeth came together before. very disappointed in surgery except right jaw was improved...Wish

Dr. had left my left jaw alone like I wanted.... 

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paigeinpain, Community Member
3/17/11 4:04pm

Hi, Oh you sound like me....I am 42 and had tmj from being 8years old after an accident until first surgert at 25, I asked him over and over not to do my left side that it didn't bother me and he said he had to , well he made 8 thousand off that joint and when I awoke I felt my heart was in my ear and there was blood that had come thru like 4 inches of bandges and as I sit here I could cry as I often do because my ear sounds like a school bell  going off and it never stops and I can't hear at all out of it. This Dr. sent me to get ear fixed by a friend he knew and he said he couldn't do anything and had his partner try and I can hear him say HOW IN THE HELL DID HE DO THIS TO YOUR EAR, HE WENT BEHIND AND BURST MY EARDRUMN AND MESSED THE BONES UP AND THAT WAS A BEGINNING OF A LIFE OF CHRONIC PAIN. I got phone calls from him for two years and I was so sweet and thought oh he didn't mean to, and after two years he had his lawyer send a letter saying to find another dr. and I wasn't even his patient, my loss because I found out later he took my hearing away and I should of never had to worry again at least about money. I ended up having another surgery a year later to try to fix his total messed up job, plus two ear surgeries where he came out and said he didn't know if I would walk again, thank GOD he was wrong on that. After two failed surgeries , they put me on oxycontin the year it had come out and I did great , but the Dr. didn't believe there is a limit to opoids...

six years ago I came off of so much medication on my on that I don't know how i lived thru it,thank God again....Then I was attacked by a pit bull dog in the face and it was like nothing I can even explain, the dog ate my nose, just messed up everything and inside my heart and head was even worse P.T.S.D. ,ANXIETY AND ALL THAT GOES WITH IT... I then got infected under my eye and fought that for almost four years, until it kept draining down thru my teeth and the infectios disease dr said i was gona die if they didn't take my teeth out..the infection never had a place to get out so after they pulled my teeth, it was like somebody was ripping my joints apart for months and I was back on meds. but nobody understands that they gave me so much to start with and I didn't know , and now I lost my ins. , my head ,neck,sholders ,arms and I really think it effects your whole body. I have a wonderful oral surgeon at emory in atlanta and he is doing things for charity, he said all I could do was joint replacements and they want pay for the joints...I prayed really hard and went back one more time, and he said if he numbed my joints and it helped with some of the pain he had one more surgery, so he stuck needles in my joints WHICH WAS HORRIBLE... and it worked on the sides of my head until the middle of the night and then it wore off and oh its been alful, but hes gona take muscle out of my head and put it inbetween where the disc should be...I'm terrified...the last two I stayed in hospital over a wk. and they say I will go home in a 23 hour period and thats crazy, but nurses say they want kick me out if post op pain is to bad. I also found out that somehow I need my face rebuilt which has metal and screws and a glass tube in my eye, it's all messed up....Theres so much and nobody to talk to, I have to try one more time. If anybody sees this and can respond please do. I can't afford to get anything done with my teeth and my bite , so anybody knows if your bites off then you can get tmj, and just wondering if anybody out there has had surgeries and have dentures or no teeth? I'm in desperate need for someone to talk to that knows what tmj is like, and then to throw all the damage the dog did, well that just is WHAT???? Help Somebody Please.......

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jpaige, Community Member
8/20/11 10:34am

I'm sorry you have been through all of this.  You have been through a lot.  I'm probably not the best help at answering your questions but I will try.  If your bite is off, yes this can cause wear and tear and mess up your tmj joints.    I am also 42 and in need of my a right jaw joint replacement.  I also had my first surgery at age 25 but they did not go directly into the joints.  I had lower jaw and chin surgery to try to correct the tmj pain and the chin surgery was more for aesthetic purposes because I felt I had a pointed chin but I would take my own face back in a heartbeat.  The surgery left me with paralysis from my lower lip and below, a very fake looking smile with my lower lip looking completely flat and my chin tissue hanging straight down (hard to explain you would have to see it).  Anyway, it completely changed my looks for the worse and has changed me as a person.  I also have worn braces two or three times, I can't remember anymore, and when I get this jaw joint replaced I will have to once again get braces.  I have heard that if you wear braces too long that it can loosen your teeth and you can lose them, but I have no experience with this.  Because my bite has been not completely right and messed up for years due to former surgeries, I believe this is what has caused my right jaw joint to be completely gone now.  I have zero cartilage and its bone on bone.  Painful to eat, I hear "bone crunching" even when I open my mouth, headaches, teeth aren't aligned right now... everything is messed up.  Tired of the pain and depression too.  Although it sounds like you have been through a lot more, I can definitely sympathize with you.   I'm scared to have my jaw joint replaced but I can't live like this either.  I wonder how long the surgery is and if its a dangerous or extremely risky surgery.  Does anyone know?

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retired, Community Member
1/ 5/12 11:10am

hello pianogirl,   I have had the same experience along with 3 cysts in the left ear area .two have been surgically removed.   In the last 2 months another one has grown near or on the suture line in front of my left where the jaw surgereon had made to place the jaw joint replacement...  ear pain and loss of hearing over the last 3 years since my surgery 3 years ago has been prominent along with cysts now...  all my 3 ent doctors agree it is the jaw....  

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Pat, Community Member
6/15/12 9:43pm
Hi! I had jaw joint replacement in 2001 and yes I have had the ear ache everyday since. I was in a very serious auto accident with damage to head back pelvic and just about every inch of my body. I cannot open my mouth wide enough to eat a sandwich and my poor ears. I have questioned whether or not I would have been better off without the surgery. Good luck! Reply
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By pianogirl, Community Member— Last Modified: 04/02/14, First Published: 02/05/10