Thank you Snapple for your story. I was surprised how much of that resembled some of my issues. I’m sorry you have been through all that. You are super resilient fighting through all that. I’m very sorry about your daughter as well, so sad that she was disabled at such a young age!
For whatever it’s worth, I wanted to tell you and this forum about counterstrain. Go to counterstrain.com and find the highest level / trained provider near you that you can find. At least for me, they have been heads and heels over everything else I have tried. They have treated cranial nerves, lymph nodes, lymphatic drainage issues, inflamed nerves, brain, spinal cord, nervous system dysfunctions, etc., etc. I’ve seen them solve other very complicated cases, just not me (yet!). They are usually PTs by trade, but really they are the highest level osteopaths.
I suppose the question (as typical) with EDS would be finding a provider that is qualified to diagnose a complex case. I will not rule it out. I’m in process of talking to someone to help me transition to Medicare Part G. Will that help vs simply only Part B or still not enough? Really clueless with how to navigate insurance issues as well.
Small sidebar, I’m procuring a Prosomnus device to help hold my jaw in a better position at night and get a little better airway. Also had an orthodontist suggest getting an MMA surgery to help with the narrow airway and TMJ nerve issues. That would be hard to justify to Medicare and hard to prioritize medically with multiple issues. But for me, I imagine just getting the airway back and the nervous system in consistent rest and repair vs. constant fight or flight would do wonders. Easier said than done!
Overall my C1 has never stayed aligned and that’s one of my biggest issues. My therapists have not figured out why. I know surgery is always a big gamble (a couple big ones backfired on me already), but wondering if creating space can allow vascular and other systems to heal and repair…