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My 34 year old niece (Read 3200 times)
Debrak
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My 34 year old niece
Apr 6th, 2010 at 4:23pm
 
My 34 year old niece was diagnosed yesterday and is at UCLA medical center in Los Angeles.  Needless to say we are very concerned and have never heard of this disease before.  She has already had a couple of strokes and we are awaiting the Neurologist's treatment plan.  I guess I am just looking for some words of encouragement.  This is an awesome website!
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« Last Edit: Apr 6th, 2010 at 4:23pm by Debrak »  
 
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mg12061
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Re: My 34 year old niece
Reply #1 - Apr 7th, 2010 at 7:43am
 
Welcome, You came to the right place for encouragment. It's always such a shock for everyone in the family. The best advice is to become as educated as possible on moyamoya. Also finding a Dr. who specialises in moyamoya treatment. This site makes it so much easier than it was when my daughter was diagnosed. 8yrs ago,she was 5 yrs old and diagnosed with moyamoya. After several strokes and 2 surgeries she has been stroke free for 8 yrs! If you have any specific questions feel free to ask away. There's usually someone here who can snswer it or point you inthe right direction to find the answer. Please keep us posted......(((HUGS))))
Mary Grace
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Debrak
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Re: My 34 year old niece
Reply #2 - Apr 7th, 2010 at 2:24pm
 
Thanks so much!  I have been reading just about everything I can, but talking with people like you who have actually dealt with this is a wonderful resource  We are hoping to get the Dr's treatment plan today.  I will keep you posted and thanks for the hug.  I really needed it!
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Debrak
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Re: My 34 year old niece
Reply #3 - Apr 8th, 2010 at 1:48pm
 
Laura's first(?) surgery is scheduled for today at UCLA Medical Center.  I don't know the name of the surgery yet.  We are all hoping and praying for a positive outcome.  Thanks!

Debbie
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Debrak
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Re: My 34 year old niece
Reply #4 - Apr 8th, 2010 at 5:49pm
 
Laura is having EC-IC today.  Is that commonly the first surgery?  What is the recovery like?  Thanks!  Debbie
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melissa
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Re: My 34 year old niece
Reply #5 - Apr 9th, 2010 at 9:03am
 
EC-IC bypass is the surgery that she is having. What type of EC-IC did she have...direct or indirect and what method did they use? I hope all went well with surgery and that her recovery is quick.

Your family will stay in my prayers.

Our website for James is www.jimmysmoyamoya.blogspot.com
maybe some things I have posted there might be of some help to you all. Best Wishes

Melissa
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Debrak
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Re: My 34 year old niece
Reply #6 - Apr 9th, 2010 at 12:11pm
 
Thanks  I'm not sure whether it was direct or indirect.  The surgery lasted nearly 11 hours and the Dr said it went well.  We hope to know more today and in the days & weeks to come.

Just read your blog & it sounds like she had the same surgery.  They took an artery from her scalp and connected it to her brain as I understand it.  Praise God

Debbie
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« Last Edit: Apr 9th, 2010 at 12:25pm by Debrak »  
 
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