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MoyaMoya and Coarctation of the Aorta (Read 1999 times)
bel
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MoyaMoya and Coarctation of the Aorta
May 5th, 2010 at 3:25am
 
My 3 year old son was recently diagnosed with MM and coarctation of the aorta. Two weeks ago he went through bilateral STA-MCA. Now we're reviewing the options to repair the coarct (open heart surgery or stent) From what doctors have told us this is an "extraordinarily rare" condition. If they do open heart they will need to make a temporary bypass in his heart to continue blood flow to the brain to avoid stroke during surgery which they said might be too much of a risk. And for the stent they need to do several angioplasty's to make room for it first, which is a little more safer but he will eventually need open heart surgery to replace the smaller stent. Has anyone gone through this? If so, what was done to fix the coarct? I've been looking for information all over the web and couldn't find anything on the two conditions together.

Thanks in advance for any information.

Bel
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Little Luca
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Somerset West, South Africa
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Re: MoyaMoya and Coarctation of the Aorta
Reply #1 - May 5th, 2010 at 4:00am
 
Hey Bel

Unfortunately I've got nothing to add but just wanted to wish you all the best for your little man.

Mark (Luca's Dad)
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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!
 
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LA
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Kneeland, USA, 15, 113, C
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Re: MoyaMoya and Coarctation of the Aorta
Reply #2 - May 5th, 2010 at 8:43pm
 
Bel~
Sending love and support.

Linda


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Linda (LA)
 
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PaulaMart
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Re: MoyaMoya and Coarctation of the Aorta
Reply #3 - Jun 8th, 2010 at 5:30am
 
Hi, my daughter has MM and aorta coartaction. She was operated of aorta coartaction with only 8 days (they didn't know that she had also MM) and then, when she was 4 years, she was operated of MM by Dr. Scott. I'l send you a private mesagge.

All the best.
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