@Glitterbats –you could be describing my situation. POTS, other forms of dysautonomia, ME/CFS leaving me bed bound much of the time, CCI, hyper mobility, May Thurner, elongated and calcified styloids and a few other gems. I first became notably ill in 2013 and have been searching for answers/diagnosis/treatment ever since. So…I feel you, as they say. I do indeed know what you mean when you say that your nervous system just stopped working.
And…I also understand what I take to be a familiar feeling of slowly wasting away in the corner while others seem to be charging ahead with healing. I know that in the wake of so many people dealing with long covid, I felt frustrated, particularly when I encountered those who were bemoaning the fact that it took 10 whole months to get a diagnosis! (I am sure at 10 months in I also thought I had spent waaaay too much time trying to get answers; I just had no idea that the months would become years–no perspective on that).
But here we are, armed with so much more info than we had last year or the year before and with plans to do something. It is hard to wait, but you will get there. I loved the idea of surgery with Dr Nakaji but he declined me due to MCAS and Hypermobility. If I were you, I’d contact his office today (online form!). You did not mention either of those co-morbidities, so perhaps he will take you. And I was initially offered a surgery date within six weeks of my original outreach. Dr Constantino is also a great option to pursue. Get on his calendar for a consult if you can. I second @Isaiah_40_31 ‘s suggestions, and while I would love to see Hepworth, I just don’t think I can wait that long.
I am having my first of two styloidectomies in a couple of weeks and will report back as to what miraculous–or merely beneficent–impact it has.