Thank you, though I still don't know how I got through it! lol
As far as surgeons, I think it's best to get a few opinions. I personally ended up going with an orthopedic surgeon, but he has a spine fellowship and his specialty is adult spine disorders such as stenosis, scolosis and spine injury. He also works with major sports teams and gymnasts, etc and is part of a well-known ortho group. I did a lot of research into docs, plus i got opinions from others. My physical therapist was wonderful in giving me doc recommendations. If you have a PT, you should ask them. And, at PT, I was able to meet and talk to some of my surgeon's patients. So I got good recommendations. And when I went to the hospital, the nurses asked who was doing my surgery, I told them, and they all said if they had a problem, they'd want him doing their surgery. They said I was in good hands. So I was lucky and found a good orthopedic doctor. It's more of finding a good surgeon, whether it be ortho or neuro, plus I guess personal preference.
I am presuming you are being checked for ankylosing spondylitis? My rheumatologist had suspicions of that at first. After my first lumbar MRI, he suddenly had me quickly get a sacroiliac MRI to check for it. But the MRI did not show any fusion so he ruled it out, I guess, though I never had that HLA blood test.
But again, as for surgery, it doesnt matter if it's an ortho or neuro. Just make sure they specialize in spine surgery (that's all they do) and have a fellowship in spine surgery. Read up about them, ask nurses, ask your physical therapists, ask other people if possible who they had surgery from and how it went, etc.
Hmm, well you can probably call your local hospitals and ask if there is someone that can help you out regarding finding a good surgeon. You always want to ask (whether it be your pain doc, primary GP, nurses, PT's, or anyone else) who they would trust to do surgery on themselves or their family members. You can also visit the page of NASS, which is the north american spine society. They have information for patients as well, plus you can look up by zip code to find surgeons nearby. There are also other sites where you can find similar information. Some of them also list if the surgeon has a spine fellowship. You can always make appt's. with some and just go like it's an interview. You go and ask them questions relating to their background and the surgery. Even though I was given a good doc recommendation, I still brought a list of questions with me when I met the doc. But these are just some ideas.
You sound like me, never knowing what "nerve will be assaulted" when you wake up. I never know that either. Never know where or when I'll get extreme pain or what body part will suddenly go numb. I also get problems with my shoulder, usually my left one. I've had terrible pain and spasms in my left shoulder so terrible, that my whole shoulder/arm were pushed forward & it felt out of place. I even tried pulling it back to no avail. I know how you feel and how tiring it is dealing with pain.
I just thought, I wonder if having AS might have something to do with why your docs are saying you shouldn't have surgery?