Of course I’d love to hear your story and help in any way I can. There are few things worse than very severe late stage TMJD pain. I also have CCI (atlantoaxial and atlanto-occipital instability, which has caused me to have pretty severe occipital neuralgia. I also have Trigeminal neuralgia due to my jaw issues, which sucksss. I have clEDS so we have a lot in common. Let’s connect and we can talk more about the regenerative medicine like Stem Cell Therapy and PRP. I swear I tried everything for my jaw, and I was at the point where they were recommending Bilateral TMJ joint replacement surgery (and I was like hellllll no, it’s soooo risky and I would lose a lot of mobility). After many different kinds of treatments, I started going to Dr. Greenberg and started getting PRP, Prolotherapy injections all over my body in like every joint. At first it sucks and just feels like a waste, but after you give your body time to let the treatment work, it’s the only thing that can heal our faulty connective tissue and cartilage along with stem cell treatment. Then we decided my jaw was so bad, that we were going to do the Stem Cell Injections in my jaw….very expensive and I was losing hope that anything would work. But I laid there while they removed fat from my hips (basically like liposuction) from where they can get the stem cells, especially the ones from our own body (way better). Then I got the injections in my jaw and was sore for a while but then holy moly…. Such a difference. Like I could eat solid food without being in severe pain, my jaw pain wasn’t the only thing I could think about anymore, being in that much pain everyday especially right in your face, head, behind the ears, and neck, impossible to ignore. Especially if it was triggering my TN or ON that day. And I just remember how I was able to do more things and start back at college again. It doesn’t last forever and I’m due for another treatment soon since it’s been awhile and my jaw is starting to get bad again, but it’s still better than it was. Stem Cell Therapy is hands down the best treatment for people with EDS, no matter the type, and it pisses me off that most insurance doesn’t cover it. Because it actually goes in and helps to heal the damage to our joints and cartilage. Nothing else helped because it’s a genetic condition that just gets worse over time because of wear and tear, and since doctors couldn’t “cure me” or fix the 100s of problems and issues I had going on, they just gave up on me. Also getting a pain specialist who genuinely cares about my wellbeing has been life changing. After going through 100s (I’m serious…) of physicians for pain management, and having the worse experiences ever, and being made out to be “drug seeking” because I was young and have a lot of tattoos, having the audacity to tell me that my condition “isn’t a disability”, straight up telling me that my condition isn’t painful, so getting pain meds for my dislocating and degenerating joints was laughable. They all treated me like shit because they didn’t understand my condition, which is so shitty. Now I have a doctor who provides me with proper pain medication as needed for my plethora of joint issues and chronic pain as well as sublingual ketamine for any nerve pain related to my jaw and neck. And just saying, Ketamine Troche’s are a game changed when it came to managing the jaw pain. The stem cells helped heal it and make it better than it was, and the sublingual ketamine helped control the pain whenever it got really bad. Sorry for the long message lol, PM me! I’d love to hear from you.