Posted by Marlene on March 14, 2003 at 14:51:03:
In Reply to: Tyler posted by Rena on March 14, 2003 at 11:35:08:
Hi Rena! My name is Marlene and a few months ago, we asked the same exact questions as you did, for my niece Mandy, who has moyamoya and suffered a major stroke right after Christmas. Thanks to DJ and his advise, we got other opinions (you can't ever have too many opinions, time allowed) See..they told us here at the Unniversity of Penna. that they did the surgery and they were very good, BUT..they wanted us to wait. We too, knew Mandy was another stroke waiting to happen. We sent her records to Dr Steinberg at Stanford, He is one of the best in the country, he has did over a hundred and fifty by-pass surgeries for moyamoya and he said after viewing her records, NOT TO WAIT. Our family made the arrangements with the help of his staff at Stanford and a few weeks later she had both her surgeries and is doing great! My point being, their are doctors out there willing to do surgery, but when?? How much experience with this disease do they have and how soon can the surgery be done? Your son's case should be evaluated by the best! You'll know better your options, what ever your final choice is. We live on the East coast, but from all our research, the best was on the west coast and thanks be to God, and all our support here with this moyamoya family, we did it! I pray You will too.
Tyler, You and your family will be in our prayers! Please keep us informed. Their are many here ready to support you in anyway we can.
Bod Bless,
Marlene