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My mom has had moyamoya for12 years (Read 2551 times)
terra42519
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burnside, USA, KY, Kentucky
My mom has had moyamoya for12 years
Apr 13th, 2004 at 12:33am
 
Hi every one..My name is Terra and i'm 20..My mother has moyamoya she will be 40 in july..she was first told she had it at the age of 28..they told her she wouldn't live to be 30..she hasn't had surgery she is just on meds..she has have over 10 strokes and lost her speech. she can talk a little now but not much..My sister and I was tested for it about 7 years ago and at that time we didn't have it.. she is doing alot better now and i really want her to have the surgery because maybe it could help he get back a little of her life that she lost..
But I can't find a doctor to give her the surgery..
  she has vision problems and can't use her right arm b/c of a stroke they have her on many different meds..
I miss my mom ..She was a very outgoing person and now she is suffers from depression..she has regained her speech b/4 and her vision  but had a stroke and lost it all again..Does anyone with moyamoya who has has the surgery live in ky?
I would love to learn more about the surgery..
Right now my mom is in a nursing home..but she is able to do for he self but needs help in some things like getting dressed or getting in and out of the shower..
I would love to learn more about the surgery

THANKS TERRA
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janicetedd
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Sister - Patty w mm

Posts: 221
Waterford, MI
Gender: female
Re: My mom has had moyamoya for12 years
Reply #1 - Apr 13th, 2004 at 5:11am
 
Hi Terra

My heart goes out to you with your mom.  My sister Patty has mm and has 2 daughters.  Patty's situation is a lot like your moms.  Patty did have the surgeries and continues to get better a minute amount at a time.   

This webiste is outstanding.  I am sure that you will get a lot of support. 

My sister lives in Michigan.    

God Bless you and your family.

Janice
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Nancy_N.
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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female
Re: My mom has had moyamoya for12 years
Reply #2 - Apr 13th, 2004 at 4:21pm
 
Terra,
         Have you contacted Dr. Steinberg or Dr. Scott they will look at her films and give you an opinion Dr. Steinberg is in Ca. and Dr. Scott is in Boston read on this site you will find out alot of what you need to know. Almost anything you want to know will be on there.
Good Luck!
                         Nancy Smiley
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