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    Old 07-26-2013, 11:54 AM   #1
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    Question The "Exciting" New World of TMJ Disorder

    I'm new to this disorder, or at least recently diagnosed. First of all, I want to apologize to anyone on the planet who has this disorder because I have underestimated what a big deal it can be -- and what level of pain it can cause. You are all my heroes!

    My dentist referred me to a TMJ "specialist". Turns out he isn't actually a specialist. From what I can tell, he is a good, caring dentist who has encountered lots of cases of TMJD and has figured out a sort of "assembly-line" approach to patients, with the end culminating in a splint (all paid for up-front). I went to the initial consultation, paid $190, and after he did his examination and showed me some slides of "normal" and "abnormal" TMJs, said he was pretty convinced that I had "sprained" my TMJ, and then his assistant stepped in and told me on my next visit I would need to pay $2,600 up front.

    I went back to my primary care physician. She ordered an MRI of both joints. The results showed: "the right meniscus of the TMJ is deformed, degenerative, and inhomogeneous. The meniscus is displaced anteriorly both with closed and open mouth positioning. This is compatible with complete internal derangement of the TMJ. Degenerative changes includes areas of articular cartilage ulceration or denuding, with mild subchondral sclerosis."

    I now have an appointment with a highly regarded Oral and Maxillofacial surgeon who is the director of facial trauma services at a major hospital.

    The pain is incredible. Relentless. If it didn't hurt so much, I'd be tempted to admire how powerful a motivator it can be. But wow -- it impacts just about everything in my world right now!

    What should I expect to hear from this surgeon? What is typically suggested with the condition I described? I'd just really appreciate any input in knowing what I'm up against here.

    Thanks so much for ANY help you can give!

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    Old 07-26-2013, 02:29 PM   #2
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    Re: The "Exciting" New World of TMJ Disorder

    If he/she is a good surgeon, they will not recommend surgery at the onset. Having been through the ropes (and so far avoiding surgery), I would recommend you explore non-surgical treatments first. Hopefully your OS will agree. I also have displaced disc and severely eroded condyle on my left side. My OS said no surgery recommended, but if I were a surgical candidate the only option would be total joint replacement. There are lots of treatments available including physical therapy, splint therapy (I would also be cautious about that), moist heat daily, exercises, rest. There is a book that someone always recommends here called the TMJ Healing Plan. The NIH recommends less is best in treating TMJ...keep that in the back of your mind. If you can find a dentist that is a member of the Academy of Orafacial Pain or the Board of Orafacial Pain, that would be the best place to start. These dentists are very conservative in their approach of treating TMD. Many of them can refer you to a physical therapist trained in TMJ...a hard thing to find. I found my PT through my dentist before I even got in to see him. His waiting list was so long, that I asked his receptionist what PT he uses and I started seeing her before I even got in to see him.

    Finally I cannot sign off without recommend exploring rolfing. I think I am the only person on the planet (or at least on the web) that talks about this. My rolfer has turned my life around. TMD disorders and posture issues are very much do consider rolfing as a potential therapy.

    Old 07-27-2013, 10:21 AM   #3
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    Re: The "Exciting" New World of TMJ Disorder

    Thank you so much for your response! Most of what I've read and researched so far says to avoid surgery if at all possible -- and it sounds like you agree. I've heard about the various treatments that you mentioned, with the exception of rolfing. I really like the concept. I have OA in several joints (including my right TMJ) and I'd love to be able to improve movement, especially since I'm around 50, have three teenagers, and lots of this life left to live, I hope.

    I'm on prescription pain meds to help manage the pain right now, until I see the OS. Have you found other ways to help with the pain, things that I can do at home? I use ice packs, but I wonder if heat is better. I'm going to check out the book you mentioned as well.

    Thanks so much for your response. Truly appreciated!!

    Old 08-08-2013, 05:20 PM   #4
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    Re: The "Exciting" New World of TMJ Disorder

    I agree with Clenchr that even though you're going to an excellent oral surgeon, surgery should be the last option, not the first. This is being said by a woman who, after exhausting all other options had total joint replacement.
    Over the course of twenty some odd years of TMJ pain I went to three different top oral surgeons at dental schools. Each time they worked with me with treatments other than surgery until they exhausted all of their options. Only then did they operate.
    For the pain, in addition to the muscle relaxers, I would use moist heat, eat a soft diet and do gentle stretching exercises which your doctor, dentist, pt or oral surgeon can teach you.
    My best wishes to you. TMJ issues can be very painful. I'm one of the lucky ones who is finally completely symptom free and out of pain, but it took a long time and a team of specialists to accomplish this.

    Old 08-16-2013, 10:04 PM   #5
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    Re: The "Exciting" New World of TMJ Disorder

    Thanks so much for your response. I've now seen the OS twice. This past Wednesday they made the forms for a splint that will be ready in a week and a half. He told me it will fit over all my top teeth, and he wants me to wear it at night and during the day as much as I can (that will be difficult since I teach at a college and I'm the chaplain, so my job requires talking on a regular basis).

    The burning pain just isn't going away at all. And it's unlike any other pain I've ever experienced. The OS prescribed Vicodin, and now Percocet, but even these strong pain meds don't help much. And I also would prefer NOT to be on them. Muscle relaxers help, but I can't take them during the day because I can't function well when I've taken them.

    I really like the doctor. He told me he would stick with me until we found a solution for the pain. And he said he's had fairly good success with patients and splint therapy. I just don't understand how this splint will help if the cartilage is displaced and deteriorated and there is arthritis in the joint. What am I missing here?

    I'm so glad to hear you're symptom-free now! That gives me hope

    Old 08-17-2013, 03:01 PM   #6
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    Re: The "Exciting" New World of TMJ Disorder

    I was diagnosed with TMJD about 4 years ago after a long journey to figure out what was wrong. When I finally found an appropriate Specialist, I found out my discs were slipped and I had some significant condyle degeneration.

    I ended up in a lower mandibular repositioning splint and an upper splint for sleep that had a 'wedge' that came down behind my lower teeth to hold my lower jaw forward when I slept. Prior to this, I'd worn an upper bruxism flat plane splint.

    There are lots of different kinds of splints, but I can say that with my lower splint that I wore during the day for 26 months, I was able to talk with no problems. Well.. after the first week or two. I had a bit of a lisp as my tongue learned to operate with the splint taking a bit of it's usual space.

    The splint really helped my muscles loosen up and my bite to settle into a more natural positioning. I combined it with a bunch of PT/trigger point release sessions as well. The PT worked on my neck, shoulders and jaw. She also worked some on my body alignment. When the jaw is out of alignment, it can impact the entire body.

    Many people with TMJD are also diagnosed with Myofascial pain and Cervicalgia as well. I did take muscle relaxers a couple times during my treatment process, but only at night since I couldn't work while on them. It made the days tougher when my muscles were in spasm like that. Trigger Point release work can really help with that pain. It is very painful during treatment, but once you experience the 'release' you will feel a significant difference. If you can find a therapist who can do orofacial trigger point work in the mouth, I'd highly recommend it.

    Good luck with your treatment.
    Asthma, Allergies, Dry Eye, severe LPR/GERD, TMJD, Hearing Loss, Ulnar Impaction Syndrome, Shoulder Impingement, Ankle ligament repair, arthritis, Joint Hypermobility Spectrum Disorder

    Last edited by MountainReader; 08-17-2013 at 03:05 PM.

    Old 08-18-2013, 10:53 AM   #7
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    Socrates had an upper splint recommended to him, And MountainReader had a bottom splint recommended. I wonder which factors lead to such a choice, or whether it is just the specialist who believes one is more effective over another.

    In no way did I mean to hijack this thread, but I was just thinking out loud. Having said that, I had a neurological dentist recommend a bottom splint for me to be worn 24 hours (though I haven't began because I am waiting for home sleep test results first).

    Thanks for sharing, Socrates! Best of luck to you through this!

    Old 09-16-2013, 07:18 PM   #8
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    Re: The "Exciting" New World of TMJ Disorder

    Splints and rolfing are definitely things to try out before resorting to surgery. In terms of myofacial pain, in the 7 years that I've had it and after going through Ibuprofen, Tylenol, Excedrin, various muscle relaxors, and even antidepressants, the thing that amazingly works for me is Tiger Balm. I usually get headaches in the afternoon and evening, and I perpetually smell of it, but it is definitely worth trying out. Make sure you get the one that has a vanishing scent, as that one has the consistency of lotion and is not too oily. Just apply it liberally on the joint, sides of your face, under your jaw, and on the sides of your head; basically anywhere that hurts. Hope it works!

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