I know you were thinking of this aka why I told you about that lady but have heard very mixed things on this and I think it is good your doctors are not rushing into this. I hope they come up with a plan though. I am sorry as I have not followed your condition though I do know how bad it is but anyhow have you thought of other treatments like scs etc or that is not for you. I think I told you about this girl who is 17 so young anyhow she was in a wheelchair,unable to eat,out of school from the pain where her mom home schooled her. She went under every type of treatment and still was like this with some ups and downs of course of better times. Anyhow now she has a scs and she is back in school and out of the wheel chair etc. I am not saying this is for you but that things can get better but it is true about the long process of right treatment and trust me as I am making these choices about what is right and what is wrong for you. Hang in there