Islandgrl, I am responding to your post because I have been agonizing for the last six months about going through with a surgery knowing I have RSD in my left arm. I am terrified to go through with any surgery because of the fear of spreading RSD. I have had RSD for almost two years. It got it after I had my ulnar nerve moved in my left arm. I have RSD from hand to shoulder and into my neck. I took me almost two years to get it to calm down and I don't want to go through another serious flare if I can help it. I would like to keep it just to those areas if at all possible. However, as luck would have it, I have a fairly large bone tumor growing in my right hand. It was found by accident just one year ago when a hand surgeon wanted to see how much bone loss I had in my left hand from the rsd. And there it was, this big, black hole on the x-ray in my right hand. These tumors are called enchondromas. They typically are not cancerous but they can turn into cancer given enough time...

I have seen several doctors since and all of them (except one neurosurgeon) has recommended I remove this tumor. This will be a big deal because it will require a bone graft from my wrist. I am now seeing the tumor pop out of the bone in my hand and it is starting to hurt. It hurts to hold things or to put any weight on my hand at all.

I have been to the Cleveland Clinic and that is where I shall do the surgery if I elect to go through with it. They are the only group of doctors I have found who are experienced in working on RSD patients. I have another appointment next month with Dr. Michael Stanton-Hicks to determine how to block the arm, what type of precautions to take, etc. He is the only doctor I have seen who sees RSD patients on a regular basis. I am so scared I can't even put it into words because I know the risk I take by having a surgery on my upper limb of all things (which is the most likely place for a spread).

I can't advise you what decision to make except to say I can so empathize with what you are going through and the fear and anxiety that comes with this situation. I suggest making a trip to CC to see Dr. Hicks or to see another RSD specialist before going through with any surgery to your leg. At least learn how the experts would block the leg and what precautions they would take to reduce the risk of a spread.

I know what this decision is like - stuck between a rock and a hard (very hard) place. Good luck.

Lisa