Originally Posted by alaska49

I have full body RSD but started in the right foot. I was on ketmamine and my foot wouldnt get any better so was sent to NYC to see a specialist in ultrasound and found out there was a neuroma in the nerve almost like a cycst right in the nerve. If I wanted ever a chance to get better it needed to come out of course hearing that is something you think like ya right no way. But it was my only chance which ended up needing 2 surgeries to fix. My doctor talked to every doctor from every coast including schwartzman for the first one they just wanted to try and cryo freeze it so they looked for the best pain specialist in the country that deals with ketamine. Which I ended up in NYC at the hospital for special surgery. For this one they tarted me on the ketamine, demerol, fentanyl, ativan and then put me out for the surgery and when I woke up was in the ICU with the same drugs to manage from a flare. In the end the freeze didnt work but the meds controled my pain and my pain was same the way it came which I guess isnt great. The second one would have to be a full fledge open surgery to cut the main nerve in the foot and drill a hole in the bone to bury it as I dont have muscle anymore. This really scared me but again at 21 it was my only chance for any kind of treatment to help even my meds so said yes. So again he called all the best orthos. to see who could and would deal with this RSD issue and one came forward, then he found another pain specialist in the same town this time not to just manage the pain and ketamine but to put in an epidural so from my waist down would be numb. The day was scary but went through it he did the epidural and started all the meds to get my pain managed before they even put me out. When I woke up I had a little pain not from the surgery but from my arms and stuff so got more meds. The surgeon came out and said he was so happy he did what he did as my nerve was totally shredded like it went through a cheese grinder. I stayed in the hospital for 2 weeks then the meds and epidural stopped slowly. As of now it didnt change much but from where it was cut is numb which I sure dont mind which is only like 2in place but now I have a chance. Since I have had 2 more surgeries one to take out my thyroid because of cancer and second for taking my SCS out each time 3 docs would work together the surgeon, the pain specialist, and an internal doctor these last two went great, they use ketamine, lidocain, demerol, ativan, and some other meds but I dont ever come out worse then when I go in. So all I am saying is it is possible for us to have surgery but you need the best of doctors who know and believe in what RSD is and what they are doing and how to control the patients pain. If the doctors are really idiotic about it and dont really understand RSD and how to control your pain I would definitly say no.

Sam