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Recurring Hemorrhage (Read 2308 times)
Manny
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Recurring Hemorrhage
Jan 13th, 2011 at 9:06pm
 
On November 8th my wife had a major bleed due to moyamoya.  She's being discharged from UNC Chapel Hill tomorrow after two brain surgeries and a wound revision surgery.

They didn't give me much information about what could happen in the future besides the "anything can happen" spiel doctors usually go on.

Also, she didn't have any corrective surgeries to fix the problem.  She just had shunts put in her brain to control the bleeding.  My question is can this happen again?  Should I try to lobby for her another surgery to fix (or try) the moyamoya?  She's 25 years old and Japanese.

She's starting out patient PT, ST, and OT sometime next week.  She wasn't sent home with any medications besides stool softeners and a sleep aid.

Is the worst behind us?  Or will it most likely happen again without further treatment?
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Little Luca
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Whatever it takes

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Somerset West, South Africa
Gender: female
Re: Recurring Hemorrhage
Reply #1 - Jan 14th, 2011 at 7:10am
 
Hey Manny

I'm sorry about your wife's situation but you're at the right place for info.

My foremost suggestion would be to find a neurologist with moyamoya experience to assess your wife. You'll find a list of them here:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?board=surgeons_board

It's my understanding that a shunt isn't going to alleviate the blockage caused by moyamoya, bypass surgery is the only way of doing this. Unfortunately until she has the correct surgery, the risk of further strokes is increased. What I've said is not intended to throw you into a panic, but more to get you an informed opinion from an expert. Each and every case of moyamoya is different and there are a number of bypass surgeries depending on the individuals situation.

There does appear to be a general lack of moyamoya knowledge amongst quite a few neurologists who haven't dealt with the disease before. Some form of a blood thinning medication, like Disprin,  is generally given to moyamoya patients. This helps the blood flow through the compromised arteries. I'm not suggesting you self medicate because if your wife is hemorrhaging you really want the blood to thicken, not thin. That's why speaking to a neurologist familiar with moyamoya is imperative.

Unfortunately Asians seem to be more predisposed to moyamoya than Westerners. In my research looking for a surgeon to do my daughters surgeries, it became quite apparent that the Japanese have been dealing with this disease for a very long time and the surgeons over there are very experienced. I came very close to taking Luca to a moyamoya clinic in Japan run by a Dr Touho:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1225224749

Good luck and stay strong for your wife
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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Becky
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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

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Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female
Re: Recurring Hemorrhage
Reply #2 - Jan 14th, 2011 at 12:39pm
 
Manny,
Welcome to the family. I will have to fully argree with Mark. It does sound like you are seeing a doctor with little knowlage on MM. That is what this sight is for. I hope you find a MM doctor on the listing Mark gave you. Please don't hesitate to ask any more questions.
Stay Strong,
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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