Re: Stabilizing following disaster....
"The learning curve is great and it's a long, strange and difficult road to recovery" -
It certainly is...I've never heard someone sum up my own experience of this journey quite so eloquently! I'm very happy to connect with you - it really helps to talk with someone who really understands this bizarro journey and can also help fill in the gaps. There's so little information out there for us. I've found this to be one of the very best ways to learn!
So here's a little more of my story to answer some of your question. Yes, I did have the twisted and rotated hips, as well as the imbalanced shoulders, before the TMJD really flared up. I basically was having issues with headaches only and then some dental work seemed to set off the full-blown TMJ picture. I had a root canal (tricky one, curvy root) not done by a specialist and then botched. Infection and another root canal followed. I can't be sure but it may have been the duration my mouth was pried open for that was the trigger - I've read that this is common. I was one of the most severe cases my specialist had seen, with all the TMJ symptoms except ear popping/clicking and fullness. I also had extreme tinnitus, hyperacusis and light sensitivity. Wore sunglasses inside for a time - that was a hard fashion move to pull off! I had to leave work and was marooned in bed for a very long time. It took me a long time to get diagnosed with TMJ (MS was the first dx - I think due to the headaches and the tingling neuralgia) and once I did, I tried a year following the protocol of a traditional NM dentist to the tee. His night guard for bruxism made things worse. He said that there was nothing structurally wrong with me - that it was only muscular and that the only thing he had left for me was botox, which I declined. This was one of the best traditional NM dentists in my city, a big city at that.
Thank goodnesss I found my way to a great NM dentist. I really researched a ton before I decided on one. (He was a NM dentist who co-treated with a chiro by the way...I've also heard of some NM dentists who co-treat closely with chiro's and physio's - I imagine this may be helpful for you) The moment I met him, he could see the bite issue. I have a jaw that is too low and too far back (and trapped there by the front teeth), my top teeth didn't touch the bottom. With no resting place for my jaw over years, it got totally stressed out and the muscles formed knots, trigger points, cementing a constellation of pain in place.
When I went into phase one, functional splint, my dentist (we don't use the term DDS here in Canada - I'm not familiar with it anyways) did use tensing at first and a jaw tracking device to find an initial starting positing for my splint. This may have happened a second time, but overall he tracked my mouth himself and adjusted the orthotic continually and repeatedly until we found comfort. I saw him as soon as things felt uncomfortable and he adjusted the splint accordingly. There was no limit to the visits - my jaw seemed to dictate the frequency and he used his own expertise to find the optimal position after the initial splint was made. I saw my chiro weekly for the first few difficult months of the splint. Things actually got worse before they got better for me. The first 5 months of splint therapy was awful. Many people give up because of this - I'm so glad I hung in there because finally after 5 months I felt relief I hadn't had in years and after almost a year in the splint I was nearly pain free. I guess it's tricky because sometimes people who've been given a splint unnecessarily or by a dentist who botched it up, or have complications outside TMJD, need to stop therapy. Others struggling in spllint therapy are just going through the necessary ills and need to hang in there. Apparently 2/3 of the jaw repositioning for the entire treatment (phase 1 and 2) happen in splint therapy - the first 4-6 months can be quite rough for many.
During this time, I also saw an amazing physio, naturopath, acupuncuncturist (for lock jaw) and I also bought a low frequency at home tensing unit to relax my muscles. I found that until I saw practitioners who specialized in TMJ, nothing helped (tried regular physio, massage, acupuncture and it didn't do anything but create more pain). I also could only work with practitioners who understand central sensitization and would work carefully, slowly, lightly. It was amazingly hard to find them - most people just couldn't understand and caused me more pain! You probably get what this is like...I was pretty close to giving up but I'm lucky to have good support so those around me have kept me going when I didn't have it in me.
I'm now into my second month of functional orthodontics and the pain is still quite low. There are some small up and downs, but overall quite manageable. My NM dentist sees me very frequently - once or twice a week during the first month! I just needed adjustments that often! My top teeth are moving faster than the bottom. He has created build-ups (also known as incisor blocks) behind my top front teeth which are supposed to do two things - hold the bottom jaw forward, in place, and also keep the jaw in a position that is pain free as the molars are no longer touching. He has recreated the build-ups once already to ensure the bite is still good. There are still pieces of the orthotic (build-ups) left on the two back molars and my bottom canines.
Well sorry for the lengthy post - and this is the abridged version!
What makes me hopeful about your situation is that you had some positive results, albeit briefly - "previously in PT I wore a flat plan splint very briefly and my body was holding all of the adjustments my PT made" - I wonder if you will have success working very closely with an amazing NM dentist co-treating closely with physio and chiro. I think it would be important that they really understand the full complexity/complication of your hypermobility syndrome (and possibly Ehlers-Danlos) and feel they can treat carefully and succesfully, keeping this into account. Like me, I think you need a caring dentist who doesn't put a limit on visits - complicated cases often require more. My guess is that you would also benefit from weekly chiro/physio visits during splint therapy.
Well - just some thoughts. Hope you find some of this helpful...I really hope you can finally find relief as i have!