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Re: Newly Diagnosed - looking for advice! (Read 1761 times)
nicole409
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Re: Newly Diagnosed - looking for advice!
Aug 16th, 2016 at 6:49pm
 
hey,
I just joined this forum.. yes, I agree.  Most of the posts are really old.  I was diagnosed and had surgery last year.  I want to tell you that most neurologist don't even know about MM.  If you have your angio results, send it into Stanford MM research center!  I personally didn't get my surgery from there, but about to go under their care since I have moved.
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2x2709
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Re: Newly Diagnosed - looking for advice!
Reply #1 - Aug 18th, 2016 at 12:37am
 
I believe the advice you received could be/is wrong. Surgery is the only option I know to treat Moya moya disease. If your carotid artery is block and "collaterals" are compensating for it, then you desperately need a second opinion. Without treatment, Moyamoya disease can be fatal.  Those "collaterals" are fragile and could burst.
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corynski
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Re: Newly Diagnosed - looking for advice!
Reply #2 - Aug 21st, 2016 at 9:45pm
 
Hello Sundress
Yes, you will learn that MM is so rare that very little is known about it, and each case is different.  I just want to say I agree with the last writer, I think you should get another opinion to be on the safe side.  I don't see how blood vessels from one side could begin to compensate for missing vessels on the other side.  My son William says he still has headaches as he waits for more blood flow to occur.  Good luck to you.

charley coryn
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willowz
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Re: Newly Diagnosed - looking for advice!
Reply #3 - Aug 26th, 2016 at 2:54pm
 
You need another opinion, stat!  The collateral vessels are not strong and in the long run will not hold up and supply proper blood to the brain. You need to find a neurologist with some experience with Moyamoya or other vascular diseases, ultimately you will likely need bypass surgery by a vascular-neurosurgeon. Where do you live? My sister saw Drs. Brillar and Anderson from Loyola in surburban Chicago.  Wishing you improved Health.
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DawnieLittleBitz
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Re: Newly Diagnosed - looking for advice!
Reply #4 - Aug 30th, 2016 at 4:31pm
 
You might have experienced a silent stroke.  I too have numbness in my pinky and tingling in my arm.   It was a direct result of a stroke.  In fact, I have had more than one stroke I was told.  I was diagnosed with MM last April.  Had a STA-MCA Bypass on both sides.  I still don't have much education on the disease, but now I have two neuros on top of it and a consistent amount of headaches waiting for the bypasses to stick.   GET A SECOND OPINION.  Don't wait.   It can be fatal if not addressed.
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Matts Mom
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Re: Newly Diagnosed - looking for advice!
Reply #5 - Sep 12th, 2016 at 9:15am
 
My son Matt who is 40 years old just had a stroke and they have determined he has MM.  Is anyone in the Buffalo area knowledgeable about this disease?  We went to Dent today and they really were no help.  We need a neurologist with experience and a place for therapy.
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