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MM diagnosis post stroke v MM without Stroke (Read 2556 times)
maka4868
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I am a survivor of Moyamoya

Posts: 8
Kahului, USA, usa, 412, 359, HI, Hawaii
Gender: female
MM diagnosis post stroke v MM without Stroke
Apr 7th, 2004 at 8:05pm
 
Hi everybody,

I was just wondering if anybody knew of or where I would be able to find statistics on people that were diagnosed with Moyamoya after having a stroke and people that were diagnosed with mm without having a stroke.  I was just interested because I'm from Hawaii and all the people that were diagnosed with MM that I know of on Maui have had strokes first.  I was fortunate to be diagnosed before having a stroke.  Although I was incredibly close to having one.  Dr. Steinberg had said that I had 0.3 mLs of blood flowing to my brain and after the surgery I had about 23 mLs of blood flow.  Just wondering.  Thank you.

Melly
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Aloha,&&Melly Smiley
 
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Re: MM diagnosis post stroke v MM without Stroke
Reply #1 - Apr 7th, 2004 at 10:32pm
 
Hi Melly,  Smiley

I don't know of anywhere there might be statistics such as those. That's the terrible part about this disease... unfortunately it's misdiagnosed most often and few family physicians even know about mm and it's consequences to be able to help their patients avoid the hidden dangers of moyamoya. That's wonderful that you were able to find out when you did. It makes my heart glad!!!  I also have to say you were lucky in other ways too...you had Dr. Steinberg. The best!!! Smiley

Stay well...  Smiley

Mar
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Sara
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I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
Gender: female
Re: MM diagnosis post stroke v MM without Stroke
Reply #2 - Apr 8th, 2004 at 4:41pm
 
Hi Melly:

I am glad to hear you got diagnosed before stroking. I did too, and I think it makes a HUGE difference.. Obviously.  Roll Eyes

I don't know where you could find that info. We could just take a poll on this site, though? I bet Dr. Steinberg could give you an idea, just by his experience..

Good luck searching, and if you find out, let us all know!

Smiley Sara
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alice_moya
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west hartford, USA, CT, Connecticut
Gender: female
Re: MM diagnosis post stroke v MM without Stroke
Reply #3 - Apr 8th, 2004 at 4:49pm
 
Hello
I wish that I could help you more with this.  I was diagnosed with  MM before I had a stroke.  And this was many years after the onset of symptom.  In fact I never had a stroke period.  However, my mother did.  I wonder if they are related and hereditary?
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janicetedd
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Sister - Patty w mm

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Waterford, MI
Gender: female
Re: MM diagnosis post stroke v MM without Stroke
Reply #4 - Apr 8th, 2004 at 7:18pm
 
Hi Melly,

My sister was diagnosed with mm 3 years before she had a big stroke.  She is progressing and had the surgeries about 1 year ago.   

I wonder if there is a medical doctor that would like to do a case study on mm'ers.  Maybe Dr Steinberg? 


Marlene,  I always enjoy your replies on this webiste

Janice
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