Posted by Marlene on September 27, 2003 at 00:17:56:
In Reply to: i have moyamoya posted by karen fruin on September 25, 2003 at 19:54:10:
Hi Karen~
I'm sorry to hear there is yet another suffering with this rare disease, but you've to come to right place. As rare as this is, there are many beautiful people here that have the same problem as you and will help and support you in any way they can. There is another good thing on your side... Dr. Steinberg! He's great and one of the best specialists' in the country. You couldn't be in better hands. (IMO) I don't know the severity of your moyamoya vessels but as I'm sure you know, unfortunately you have no other options other than surgery. Moyamoya leads to irreversible blockage of the blood vesseels and progressive deterioration and without the surgery you can have a major stroke anyway. So Karen, with the wonderful staff at Stanford, the best surgeon in the world and all our prayers and support, you gotta know that you have alot on your side. Good luck. Our prayers are with you.
God bless,
Marlene