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Old 06-07-2013, 10:11 AM #1
corynski corynski is offline
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corynski corynski is offline
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Default MoyaMoya Syndrome: Strangely believe it!

Greetings

I'm writing for my son William who had a stroke on the right side of his head and body about 3 weeks ago. He's 90% deaf, a child of a mother who had Rubella syndrome, and he had surgery for patent ductus shortly after birth. Last week following the stroke it was suggested that he may have Moyamoya syndrome, so we've arranged for another opinion with Dr. Mericle at HWNeurological Institute in Nashville, who appears to be a leading researcher in the field. On July 13th we'll meet with him for another examination.

Willy would like to know if there are any other deaf people out there who have been diagnosed with Moyamoya? We had been concentrating on a heart skip problem and were shocked when he had a stroke.

Please let us know if you are aware of others with this problem.

**

Last edited by Chemar; 01-20-2024 at 09:26 AM. Reason: **member privacy
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Old 01-19-2024, 09:22 PM #2
MoyaMoyaMom MoyaMoyaMom is offline
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MoyaMoyaMom MoyaMoyaMom is offline
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Default Moyamoya

Hello, I just joined and read your post. My Daughter has Moyamoya. If I can help in any way please let me know.
Sincerely,
MoyaMoyaMom
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Old 01-20-2024, 09:31 AM #3
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Welcome MoyaMoya Mom, and thanks for offering to provide info on MoyaMoya Syndrome, which I confess I know nothing about.

corynski does not appear to have returned since 2013, but please do post any info here that you think will be helpful to anyone.

I will edit in MoyaMoya to the thread title as well.
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Old 01-20-2024, 11:27 AM #4
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Welcome, MoyaMoyaMom,

I've been part of the MS scene for many years and know next to nothing about Moya Moya disease but am very glad you're offering to help here. I'm sure that if you have information you can post about Moya Moya, gradually people would materialize to add comments or other information. There was a Moya Moya forum on the list here years ago. You might be interested in reviving it--maybe ask the administrators if that can be done?
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Old 01-20-2024, 03:26 PM #5
MoyaMoyaMom MoyaMoyaMom is offline
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Thank you for the warm welcome. I'm glad I found your site. Moyamoya is a very rare neurological brain disease. Moyamoya means "Puff of Smoke" in Japanese. It is basically the narrowing of blood vessels that provide blood to the brain. Unfortunately there is no cure for Moyamoya. The main treatment is brain surgery to restore blood flow to the brain. This is a very misdiagnosed disease. Alot of Neurologists aren't even aware of Moyamoya that is one reason for many being misdiagnosed. Some of the main symptoms are strokes, seizures and headaches. These are also symptoms of many other illnesses. That also contributes to many being misdiagnosed. I have some information on Moyamoya that I will try to post. If anyone has any questions please let me.know. I am a advocate for my Daughter and am trying to raise awareness in hope of one day finding a cure.
Thank you
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