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TMJ is a big question mark and very few doctors know the answers
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TMJ is a big question mark and very few doctors know the answers

I have suffered for a little over 2 years in what was thought to be TMJ pain from a wreck and airbag deployment. It is actually called TMJ whiplash I think. So I found a maxiofacial Pain Doctor and was diagnosed flat out wrong. I did not need to suffer for years and now I am addicted to Oxycotin. My doctor claimed my discs were trashed based on reading an MRI. I never even pointed to the TMJ area as the scource of my pain. Ultimately a doctor did a Catscan and found that the long bone that sticks up I think was hitting other bones in my jaw lighting me up like you cant imagine.
My Point!
Be very careful in the decisions you make related to TMJ. There is an epedimic of Pain centers doleing out pills for what may have nothing to do with these joints and you may have problems with your bite and malformed jaw bones which is what was my catalyst to my injury. I have had a cross bite since birth so the air bag just severely aggravated it. I just got back a week ago from successful surgery which took away ALL my pain. It is unbelievable. The doctors are out there but they are few a fear. I sure hope other people dont get in my situation. I mean can you believe that a Catscan wasnt ordered until about 2 years later after a car accident? I mean to me that is malpractice but I am just grateful to God that now the battle is against Oxycotin not Pain. If you have any question about the surgery which also included a Lavage on both TMJ. There was gravel and particles that got flushed out but my discs were fine. If I had followed my doctors diagnosis I may have ended up having an unneeded disc replacment surgery.
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Avatar_m_tn
I wish your story was the first of this nature that I'd heard, but unfortunately I have several patients each year with similar stories, many have suffered for a decade or more.  TMJ injuries and craniofacial pain are difficult to diagnose even by well trained dentists/physicians/chiropractors/physical therapists.  The medical profession gets almost no training in the diagosis of TMJ disorders.  Dentists are a better trained, but woefully inadequate for the profession responsible for its treatment.  PT/chiropractors focus on muscluar problems when the source of the problem is usually an internal derangement of the TMjoint.  Unless that is addressed first you only treat symptoms and the problem will get worse for many.  I'm glad you found some help.  Sounds like you may have had arthroscopic surgery.  This will help relieve symptoms, but I will caution you that your joints can continue to break down without treatment to address disc displacements.  The medical studies are conclusive that arthroscopic surgery leaves the discs more deformed and more displaced than before.  This surgery can help relieve pain, but does not address the original cause.  I've treated hundreds of surgery failures.........Good Luck, TMJDoc
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Avatar_m_tn
Thank You for your advice. Yea one disc has like a bend in it so I guess it got displaced from the wreck. Yes I had Arthroscopy on both TMJ and the surgeon said a lot of scar tissue and other stuff maybe bone came out. I had 2 MRIs looked at by Oral surgeons up North , South  and West and they all said my discs looked fine except my Pain Doctor. I guess you can tell I am very bitter but this wreck occured 1 month before I was to have a double sinus surgery that I had been misdiagnosed on and was on Tylox for the first 2 years. So when I finally found out that my pain in the jaw was NOT from TMJ at least the severe lancing pain I was again angry that I had been misdiagnosed. There is an epedemic of Doctors in this Country that apparently think every pain patient is a drug addict and is lieing about the severity or the pain itself. All the dentists that said my discs were fine did nothing to help me until I think God let a great Oral surgeon meet my father on the Golf course. Unreal. So now I have to suffer from Oxycontin withdrawal and  it really is hard. The maxio tuberosity and another bone were hitting each other all the time. The surgeon figured it totally out and cut an inch off that bone so it wouldnt hit other bones and it worked. I am very lucky or my prayers were answered. Oh and just to add to this story. I caught pneumonia about a month before I had surgery and developed renal kidney failure. I know its from the long use of Oxyicontin. I was in the hospital for a week and the main doctor said I almost died and would have been on dialisis. Anyway my ultimate point is Doctors need to start listening to the patients way more and quit using the 5 minute diagnosis rule. Our nations medical system is saturated with Doctors that dont listen to the patients discription of what they feel when it comes to pain and other ailments.
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Avatar_f_tn
I am suffering internal derangement.  It is largely medially  subluxed on one side, and have one disc that pops right out on the other.  Had a bad car wreck, got my head knocked around.  I have had all kinds of suggestions, and read all kinds of conflicting stuff, would appreciate any feedback, to make it worse something is pinching or compressing the trigeminal nerve.  I heard that a dissectomy is not the answer, that it causes  the bones to rub together leading to arthritic problems and it seems that I already have some arthritis due to the constant inflammation in that are.  I am living in Ontario Canada and the amount of knowledge and surgeons are limited here.   I would appreciate any feedback, even names of surgeons in the US, or other alternate treatments.
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Avatar_m_tn
I'm curious how you know that the disc on one side is medially subluxated.  Have you had an MRI?  Also it's curious that you mention pinching or compression of the trigeminal nerve.  At what anatomic location is the impingement suspected/which branch etc.  A discectomy or any surgery for that matter should be done only after all conservative therapies have not been successful.  Mainly because not all surgeries are successfull either and are much more expensive and invasive.  That being said they are the best options for some patients--but only an experienced TMJ specialist and an oral surgeon working together are qualified to make those decisions.  Surgeons do surgery far to quickly in my opinion.  These conditions don't appear overnight or disappear over night.  All the surgeons (of any type) are 'gunners'/type A personalities--and need to be.  But sometimes patience is a virtue and the experienced (read older) ones learn that.  I have colleauges in Ontario.  Which part of Ont are you in.  You can check aacfp.org for referrals in Canada, mostly in Ont.  Unfortunately your dental board in Ontario is quite behind the times in understanding TMD and have slowed the training of well intentioned dentists.  But please let a qualified TMJ specialist treat you conservitavely first before you undergo any surgical procedure.  The more experienced the clinician the fewer surgery referrals needed.   Hope that helps.  TMJDoc
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Avatar_f_tn
Thanks for your reply, sorry about the delay in answering back, been on so many meds making me very sick.  THe info I gave you was actually taken straight from my last MRI on the TMJ jounts.  I have seen several neurologist's that said I did not have Trigeminal Neuralgia, but possibly a pinched nerve or something might be causing the pain.  All I know is the pain is out of league, for TMD.  I know there is pain associated with disc derangement or displacement, but this is horrible, in fact it sounds similar to SGMike's experience.  I am feeling like something is hitting a nerve from the jaw up to my temple region.  I do live in Ontario Canada, and I have seen a Maxillofacial surgeon, that I have been seeing since last year, it took a long time to get an MRI here, and finally this last one showed displaced discs.  But I just don't know what is causing all the pain that is more like neuralgia.  I went to a neuromuscular dentist associated with the International College of Cranio Mandibular Orthopedics, and he suggested after doing some computer analysis and testing on my bite with different machines, and he wants to use an ALF APPLIANCE on the top, and an adjustable splint on the bottom.  DO you know anything about the ALF APPLIANCE??  He said it would straighten the bones in the skull and realign the jaw.  After reading SGMike's story where they found the maxio tuberosity hitting the against another bone I am wondering, if this treatment this dentist is suggesting will do me any good.  OF course I don't know if that is the problem.  I have had a few cat scans, and a few MRI's, would this not show up a problem like SGMIke's if that were the case.

The thing is here in Canada the equipment is older, and like you mentioned we are behind when it comes to TMJD.  The dentist I saw has studied with Dr. Stack, and other TMJ specialists in the US.  I haven't started the treatment yet, but was about to sometime this month.  I just ran across SGMike's story, and was wondering if that is what is causing all this horrible pain.  I tried to write to SGMike but I could not get through.  DO you know of any specialists, or good maxillofacial surgeons, that would be able to detect this kind of thing, anywhere in the Buffalo, Michigan area, or if you happen to know the surgeon that helped SGMIke's problem.  Would also like to know if that problem would not be plainly visible on a Cat Scan or MRI, of the head...   Any feedback is appreciated....

Therese46..
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Avatar_f_tn
Hi Again,

I hope this is permissible, me writing this many times but I just ran across some of  these posts tonight...  I am set up to have arthroscopic surgery by the maxillofacial surgeon I mentioned, I am suppose to have the pre-op this coming Thursday.  He told me he is only going in there to look at the joint, to see the status of the ligaments, joint, and to remove scar tissue which he says he saw on my MRI back in July.  Sounds like you don't think this is also invasive...They really make it sound routine, but I am now afraid to have this done.  I really was considering it for the fact, that I wanted to know if there may be more things with the joint than the MRI shows, and I wanted him to find out for me.  He takes the conservative approach, although he said my disc on the one side is shot, and we may have to talk later about removing it later on... He says he doesn't want to do anything other than look at the joint and then possible wash it out, and take out the scar tissue during the arthroscopy.  I really didn't think that this would cause any further problem later it sounded reasonable to me.  But now I read what you wrote SGMike on it and I am frightened about having it done.  I am sheduled to have it done at the end of November, but I am to have the pre-op this coming Thursday October 30th.  Now I am scared to go....  Do most Maxillofacials do more than wash out the joint and remove scar tissue.  What makes it so invasive.  They explained that they would make small incisions, and use a scope... It didn't sound like much, but now, I am worried... Hope to hear from you soon..

Therese46..  
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Avatar_f_tn
Hi.  How did your procedure go?  I am wondering where you are in Ontario.  I am in Kitchener and have just been diagnosed with TMJ.  I can see by reading on this forum that there is a lack of knowledgeable specialists here to deal with this issue.  I am trying to avoid a long road of hassles and would appreciate any advice you can give about where to seek help.  Thanks
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Avatar_f_tn
Hi Joan,

I just went to the pre-op last week.  I am scheduled to have arthroscopy done on at the end of NOvember...  I am so confused.  I also have sleep apnea, and a lot of nerve issues with this.  I am in pain all the time.  Nothing no medication works for it.  I am really upset because the neuromuscular dentist doesn't promise he can fix it.  I am also not wanting to go the surgery route, heard to many rotten things about it.  It works for some, but with nerve pain many say it doesn't address it, and as for my disc displacement I have heard of neuromuscular helping with anterior disc or posterior disc displacement, but I had to have my discs medially displaced, and well there isn't that many success rates for that kind of displacement, although I have had a few neuromuscular dentist's that have said they might be able to alleviate some of my pain, but I would have to dole out $7000 dollars or more to have it done.  And when they do the splints it shifts your teeth and you have to have braces done afterwards.   It a long process with no guarantees whatsoever.  Most of the time, I will hear of some success rates but it always seems to be those who have some disc displacement, but like I say there are no guarantees with any of the treatments, dentistry or otherwise.  I chose to  have the arthroscopy done because I wanted to know exactly what is going on in there, also because the maxillofacial surgeon told me that there is a lot of scar tissue that he wants to remove.  I am having a hard time talking so thought I would try it, as I really don't know which way to turn.  No one gives you a straight answer, I could mention the doctors to you but I will have to email you.  I will send you a private note.  I am seeing another dentist on the 4th of November and didn't say anything about the first one so I want to see what he has to say about the situation.  What do you know so far about your situation.  Did they do an MRI already??  Did you find out what condition your discs are in??  Or do you think its just muscular problems??  I will send you an email letting you know the doctors and dentist I am seeing.  I haven't tried the dentist,  he wasn't giving a whole lot of assurances.  He told me he knew of someone in the States that does surgery on my type of disc displacement, but of course I would have to have all the treatments done with him before he would give me his name.  You know this stuff should be covered here in Canada.  Surgery is, but all you have is a few maxillofacial surgeons in Toronto that are suppose to be the best, and that is all there is.  Sorry I can't be more encouraging about it... I am pretty tired of it, because it like playing russian roulette...  I will send you a quick email, letting you know, and will keep you posted.  Let me know what your symptoms are and the condition of your discs.  The first thing you will need is an MRI of your joints...Catch you later..

Therese..... I am also under seekandfind46..



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