I'm in such a predicament ! I feel like there is no good answer . I started having neck pain 11 years ago and have been on and off (mainly on) prednisone for years. I have steroid induced Cushing syndrome ; common variable immune defiency ; seronegative RA; just diagnosed with Lupus (SLE) ; and now I have advanced problems w my cervical spine . The bone there is possibly weak and I have cervical instability - I'm starting to have more symptoms and surgery (ACDF-PCDF C2-C5) will probably be in the next few months . I have an increasingly difficult relationship with my surgeon , who I understand is very highly trained, and he has scared me to death of this. On a recent visit , I complained of visual changes, bone crunching , pain , SOB, and some radiculopathy symptoms in extremities . He got very angry and stated that my symptoms were not from my neck (except the radiculopathy) although I have had sudden changes and this always follows when I have hyperextended my neck. I am a nurse practitioner myself , and I certainly bow to his expertise , I do know my own body and a little of how it works . If I had felt that I was heard, I would feel better. Instead he put me in the position of "you have to have this surgery to prevent death or possible paralysis " and "if you have this surgery , life is over as you know it, you will have worse chronic pain (great timing with the "opioid crisis " in the news) , none of your symptoms you described will be relieved and healing may very well be unlikely ". My husband and I were flabbergasted . I have been seeing this surgeon for a few years and have never felt this way about him . Now I feel unable to complain or just vent my feelings about this without the possibility of him chastising me. Usually , I would immediately cross him off my list and move on , but for many reasons I need to have surgery where I am if at all possible. I do feel he is very well qualified to do this surgery (according to my rheumatologist ) but my feelings toward him have changed and he crossed some boundaries with me that I normally would not allow. If this surgery is going to essentially leave me a prisoner to my neck and start a series of complicated problems , I have a hard time going ahead with it. On the other hand , i could end up dead or paralyzed . I am very convinced that the SOB & visual disturbances are related. That is not a very good way to live either.
My question is this : has anyone had this experience ? & who are the top surgeons in the US that perform this surgery ?
My surgeon told me that bc of the new drugs for RA , you do not see this as often and the surgeries are less frequent. So I do not feel that this surgery is something he does often . I don't like that . So maybe I should consider traveling to have surgery . I have some support w family , but it is limited. . We also are rather new to the area and just have not made that many friends .
Anybody ??? Help???