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Progressive Disease Question (Read 1715 times)
charl
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Mother of a 18 year old
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potsdam, USA, usa, 473, 66, NY, New_York
Gender: female
Progressive Disease Question
Apr 22nd, 2010 at 8:25am
 
I have read about this disease being progressive and kept on reading. I know this as do most others here. I am feeling shocked and ignorant because I did not really comprehend what that little word means. I heard progressive and thought that is why we have the surgery done for our loved ones.I thought the surgery stopped the progression unless it was unilateral disease. So you can imagine how I felt when I was told my daughter has another occluded artery and that the disease was going to progress in spite of the surgery and that the surgery would help keep her from having strokes. I just want to make sure everyone is aware of this. I was not, and I feel pretty dumb but I will post it anyway to be sure everyone has this knowledge. Molly had bilateral pial synangiosis in may of 2006 with dr. scott. I am embarrased to say I just did not get the implication of the word progressive. Just wanted to share and hear any feed back, I hope you all already know about this. Shocked
thanks for listening, Amiee molly's mom
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my now almost 19 year old daughter/sister have moyamoya
 
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KTiller
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Freeland, USA, usa, 51, 28, WA, Washington
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Re: Progressive Disease Question
Reply #1 - Apr 24th, 2010 at 8:27pm
 
Hi Charyl,
For the last two years, I've been concerned about the progression of this disease, despite the two STA/MCA bypass surgeries for bilateral moyamoya disease. The other day I learned that indeed the progression will most likely occur despite the surgeries, but the STA artery can expand by 4-6 times its usual diameter to accommodate the increased blood flow that the brain will need as those other arteries continue to be blocked. The brain will get all the blood it needs through the bypass arteries.
I think that children are able to grow new blood vessels very effectively due to the indirect bypass. Those blood vessels then should provide sufficient blood to the brain. The brain doesn't care how the blood arrives, as long as it gets there.
Kim
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LA
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Kneeland, USA, 15, 113, C
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Re: Progressive Disease Question
Reply #2 - Apr 25th, 2010 at 1:55pm
 
Kim makes a valid and important point that should be kept in mind.

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Linda (LA)
 
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charl
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Mother of a 18 year old
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Posts: 58
potsdam, USA, usa, 473, 66, NY, New_York
Gender: female
Re: Progressive Disease Question
Reply #3 - Aug 12th, 2010 at 7:59am
 
Thank you for the post, I think it is wise to say molly had to have another Mri to make sure there wasent any damage(stroke,tia) caused from the artery closing. This says to me there is a chance of damage with progression. molly did not have any but it should be concidered... this came from Dr. Scott, just my opinion but thought you might like to know it is a possibility I do not have any stats on tne issue but would like any new info anyone gets
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my now almost 19 year old daughter/sister have moyamoya
 
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