Posted by Lisa on March 19, 2003 at 03:02:51:
One of JV's post brought a couple of questions/thoughts to mind:
What tests did everyone have to diagnose Moya Moya? I had, in order, MRI/MRA, angiogram, PET scan (which was pointless without the addition of Diamox), SPECT scan WITH Diamox (which is key!) and lots of blood tests.
Also, I belive there has been a published study on the long-term benefits and outcomes of adult Moya Moya sufferers. I will look for that particular study in DJ's links and get back to you on that. Although I do know that without surgery I would have a stroke(s) and/or died. With the surgery, and my post-op angio shows this, my blood and oxygen flow on my left side is great and I don't worry anymore about that side. What will happen in 10 or 20 years? I don't know but I know that right now I am safer and healthier for having had the surgery. I must admit I balked about having surgery for several reasons but DJ said to me "Don't be scared about the surgery darlin', be scared if you DON'T have the surgery." and I believe that the surgery has saved my life and others. I truly believe that if I didn't have surgery to correct the lack of blood and oxygen to the brain, I wouldn't have a long-term to worry about. I continue to urge anybody that has any doubts about the benefits of surgery to contact either Dr. Steinberg or Dr. Scott and in the meantime I will look for the follow-up study.
Lisa