Posted by DJ on March 14, 2003 at 01:12:23:
In Reply to: My 11-year-old Tyler posted by Rena on March 13, 2003 at 12:14:20:
Sorry to hear you're having to deal with Moyamoya, but glad you've found us and we can be here for you!
Trust me, you aren't as "alone" as you think you might be! Everyone here has been in your same shoes to one degree or another. It's like one big family!
A few of questions I would ask Tyler's doctors are:
1) How many Moyamoya patients have you seen and treated/operated on.
2) What surgery do you recommend?
3) How soon can you do the surgery?
If the answers to the questions are:
1) less than 100
2) anything other than STA-MCA or EDAS
3) anything less than 30 days...
I strongly suggest you contact Dr. Steinberg (at Stanford), or Dr. Scott (in Boston) and see if they will give you a "second opinion" on Tyler's Moyamoya.
You want to have Tyler treated ASAP before he suffers any permanent damage! His brain won't "settle down" by putting the surgery off for a few months, he needs to have it done as soon as possible before he suffers a major stroke!
I hope this helps...
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