I am new to this forum and wish I had found it sooner. My sympathies to others who are struggling with this - it is a bear. And thanks to all those who share their stories and advice.
I had a displaced disc for 15 years and was told not to do anything about it (!)becuase there was no pain. Finally, though, the jaw totally spasmed and we now know that there was severe degeneration going on over all those years as we finally did a scan. I am working with a craniomandibular specialist who has helped considerably with TENS and a splint. Chiropractor helps as well.
I have made a lot of progress pain-wise with the splint. I have great vertical opening and minimal pain. BUT, I have very limited lateral movement (SLOWLY improving) AND, more worrisome, have a fair amount of crepitus (bone on bone friction). As I understand it, this can be because a) the disc is still not in place completely or b) the disc is damaged.
The specialist tells me that we cannot see whether the disc is damaged using an MRI. This does not make sense. That said, maybe it doesn't matter in terms of a treatment plan anyway?
If anyone has thoughts on improving lateral movement, treating crepitus (most importantly), or MRI's they would be most appreciated! I am very worried about bone degeneration and want to treat this agressively. Thanks much.
Thanks so much for your story. I can relate to (and learn from) a lot of it. Regarding seeing disc damage on an MRI -- I don't know about the "damage," but an MRI of the TMJ can be extremely helpful in seeing damage to the joint and function of the disc. During the MRI that I had, a 6-minute "movie" of the joints' function was recorded.
How did you find a "craniomandibular specialist"? I'm having a lot trouble finding the right specialist(s). Thanks.
It was really by persistence and luck that I found the specialist. The dentist I was seeing for some time was no longer helping (and actually, I realize now, made me worse), so I just started seeing all kinds of health professionals. One of them told me about the specialist.
He happens to be affiliated with Stanford Medical Center. So what I would do is start calling all your local hospitals physical therapy centers etc. and asking if there is a craniomandibular specialist that they know of. These guys are hard to find but I think many dentists are not equipped to handle serious tmd cases. Also, if you tell me what city you're in I can ask my guy if he knows of anyone there.
Thank you, christi22.
I'm located in Charleston, SC. Would appreciate any leads, and I'll start making some calls. I am encountering dentists who want to help but don't seem to know how. A splint that seemed to work great for a few days now feels awful, and I think I've hit a threshold with physical therapy and acupuncture. At a low point ... hopefully temporary setback.
I have not forgotten about you. Had to bug my doc many times to get a name. Closest he knows of is a doc in Raleigh: Keith Yount at 919 781 6600. Tell him Dr. Martin Frankel sent you and ask if he knows anyone specialized in your area. Let me know how it goes!