Wow, you are so young and you have a lot going on. I do hope there are family members and friends close by, to provide you with the support you need and deserve to see your way through this. I am not personally familiar with the condition/s you have, but I know there are others at NeuroTalk who know more; hopefully they'll see your posts and will chime in.
You can always post on the Chronic Pain forum as well, as you've certainly earned your seat there! Sorry, not sure how to post the link to it here for you
, but I'm sure you'll figure out how to scroll down through the alphabetically listed neurological disorders to find it, if you've a mind to…
I do know what it's like to receive a decades-overdue diagnosis like this; I waited almost 30 years for mine! (I have a very advanced case of Thoracic Outlet Syndrome [TOS].) When it came it was made clinically, on the spot, by an expert in the field (a vascular surgeon), based on my medical history and some provocative tests.
Not only did I feel vindicated and a certain amount of relief, I also felt some anger towards all of the so-called "experts" before him who had gotten it so wrong
! Took a bit of time for me to get over my "doctor anger," but at the end of the day it wasn't going to help me to get well and I had to let it go.
It's great that you think so highly of the surgeon who's to operate on you in your case. I know that's a scary proposition
! What helped me was finding others with TOS who'd had the surgery I was facing and could tell me what it was like, as well as about their recoveries and other aspects of their experiences with TOS.
Most of the TOSers I met through NeuroTalk, actually! But a couple of face-to-face support groups, as well. If you live near a large teaching hospital, you might want to inquire as to whether they run a regular support group for people with spine injuries or chronic pain (or similar). One of mine was run by a Pain Psychologist, which was helpful. Oh, and I also met with a psychologist at the Pain Clinic I was going to at the time, whose specialty was counseling patients who were facing major surgery. Just a one-time visit, but it was worthwhile; he answered questions I didn't even know I had.
Natalie, I wish you the very best, and I do hope that you will keep posting here and let us know how you are doing. I admire your courage, as well as your levelheadedness (is that a word?…yes?…OK, right!) in the face of what could be devastating news. You needn't go through this alone, and we are here to help support you in whatever way we can.
Take care,
Alison