Posted by Elise on March 24, 2003 at 20:36:52:
In Reply to: Just Me Rambling posted by Douglas Veronesi on March 19, 2003 at 09:05:54:
My Sydney (8) had her surgeries 5 months apart at Boston Children’s. She is doing remarkably well. I went there thinking she was going to have surgery on both sides but when Dr. Scott read the angiogram he said the right side had Moyamoya present but in his opinion was not bad enough for the surgery. He has found if you do it too early the vessels do not grow as they should. The left side was completed with great success. Dr. Scott had asked us to have an MRI/MRA done 6 months later knowing we will be back for surgery at some unknown time. Thank GOD I scheduled it one month early because within that time she had a TIA on her right side. Dr. Scott brought her back there for more surgery within 5 days of the results of the scans. He had said Sydney's case was rare. Most do not deteriorate so quickly. On the up side the left side was showing great improvement already. We will be going back to Boston in July for her one year follow-up exams of her first surgery. I am anxious to have this all behind us.
I hope my story helped you make yet another informed decision. It may be in Hanna’s best interest to wait for the second side. I know how it feels. The way I explained it to my friends was “like a bomb waiting to go off”. Always living in fear of “the next time” Be sure you get all the necessary information and then trust your gut feeling.
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