Posted by Karen on May 18, 2003 at 15:41:33:
I have had Moya Moya for 3 years now ... well at least that is when I found out that I had it . My Nuro Doc here in Naples , FL was less then helpful with my situation .I did send all of my films to various Doctors across the US who had at least an idea of what I was talking about.I was all set for surgery at Mass General but 5 min before the procedure I cancelled , it was fear and the uncertanity of not knowing what to expect. Right now I am fortunate I have no deficits.I have been on Plavix for 3 years now and feel well. I am planning to be married next year and we have been discussing a baby and what the effects of being pregnant will have on my body . I would love any feed back anyone has on this and for that matter anything that can help me with this disease.Thanks