Pending ACDF/PCDF surgery - I need help !!

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??? 

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