Hi Jamie,

I have the CRPS in my left side, I can't imagine how you're feeling having it as long as you have and as badly as you have....

BUT....please PLEASE don't go through with the surgery under these circumstances. You are at risk of things becoming so much worse if your docs don't handle things correctly, and it sounds like they haven't a clue. Once the surgery is done, there is no guarantee that they will treat your pain any better than they are now. If they are failing you now (they are, badly) then they will fail you after surgery as well. Even a good friend to fight for you means nothing if your doctors are unsympathetic to your pain and don't understand CRPS - they won't listen to your friend any more than you.

I completely agree with taking the CRPS in Hospital form, but going into surgery with two docs who both basically dont believe your pain and dont understand your condition, is a recipe for disaster. Nurses take their orders from the docs a lot of the time - if your docs tell them that your pain isn't that bad and they mustn't give you morphine (for example), then all the forms in the world won't change that. Don't forget that most nurses don't understand CRPS either, and they are always very busy.

Cancelling surgery now must be a horrible thing to consider, especially as you have prepared for it, taken time off, arranged help etc., but surely it is better to wait a few weeks or even months and have a better surgery experience and decent aftercare, with docs who believe you when you cry out in pain?

Sorry to be so dramatic, I'm not trying to frighten you, but you are clearly having a tough time already with pain and spread, and we all know that CRPS and surgery are a very dangerous mixture at the best of times.

I wish you all the very best, and I really hope that you will reconsider.

Bram.