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Heart trouble and Moya Moya (Read 2410 times)
Shelbi
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Trinity, USA, AL, Alabama
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Heart trouble and Moya Moya
Jul 18th, 2011 at 12:53am
 
Hey,

Coincidentaly, my dad has a buddy that was diagnosed with MM back in 2005, we were talking one day and he said he had this strange neurological condition and started discribing it then said what it was and had some info from this website as well where he had read up on it(small world).Unfortunately, he has had some major heart trouble with multiple bypass surgeries and the doctors don't really want to mess with his head unless he has major problems. Dad said he has been having a lot of bad headaches but he won't tell the Dr. about it. He lives in Indiana so not sure what all Dr.s up there might be comfortable with handling this. I told Dad to have him check out Dr. Scott, but then I started thinking he was a pediatric NS, so I told him Dr. Steinburg. But do any of you have suggestions, I would greatly appreciate it and I am sure his wife and kids and my Dad would as well.

Thanks,
Tina Peters
Shelbi,daughter-MM, Chiari Malformation, Syrinx, Basilar Invagination
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STrantas
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Re: Heart trouble and Moya Moya
Reply #1 - Jul 18th, 2011 at 10:20am
 
Hi Shelbi -

I had my sugeries almost 8 years ago with Dr. Scott.  At the time, he saw adults up to age 35.  Not sure how old your dad's friend is...but I also dont' think that Dr. Scott would mind giving an opinion for anyone - no matter how old they are.  Doesn't hurt to contact him and ask either way.  Just my opinion --

Shari
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Skay5709
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Re: Heart trouble and Moya Moya
Reply #2 - Jul 18th, 2011 at 11:43pm
 
Shelbi,  I was diagnosed with mm in 2002. At the time I also had heart problems. I still was able to have a bypass in 2003. This was done at the University of Iowa Hospitals. I know that Dr.Steinberg at Stanford is the best but some of us cannot afford is. I had mine in Iowa City and will celebrate almost 8 years of survival. Tell your Dad's friend that he needs to get to a Dr. abput the headaches
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