481Re: [Parenting Children with Moyamoya] I need more info
- Jul 10, 2004I don't know if I can help but would like to try. Last summer when my
daughter was 7, she had a routine MRI performed.
(Both of my daughters have routine MRI's every 3 - 5 years because they have
Neurofibromatosis which is a neurological disorder which can lead to tomors in
the brain, along with other locations on the skin. They are almost never
After the MRI was performed, I received a call from the doctors letting me
know that they discovered narrowing of the Right Middle Cerebral Artery. They
scheduled an Angiogram/Arteriogram and found that it was virtually 100%
occluded. The collateral vessel development in the area did NOT appear like a puff
of smoke, like Moya Moya syndrome normally does.
Some doctors wanted to be aggressive about treating the problem and others
wanted to take a "wait and see" attitude since she had not had a stroke. As you
can imagine, waiting for your child to have a stoke is not even in the realm
of reality and the gall of any doctor to suggest it still appals me. They
doctos did not want to call it "Moya Moya syndrome". I researched the internet
for weeks and finally contacted Dr. Scott. I sent my daughters MRI /MRA and
Angiogram films to him in Boston and within a week, received a call letting me
know that they wanted to schedule surgery. Dr. Scott felt it was just a matter
of time before a stroke occurred.
The surgery was performed and my daughter is doing fantastic. The new
vessels are developing beautifully and we are planning to go back to Boston in
Oct/Nov for her 1 year follow-up, but the MRI in May (6 months post surgery) look
great. This summer my daughter is on swim team, doing gymnastics,
cheerleading, Girl Scout camp, etc....
You would never know that 12 months ago we were on pins and needles for her
Dr. Scott finally described the diagnosis as a "variant" of Moya Moya
syndrome, and a fellow working with Dr. Scott said "If it acts like a duck and quacks
like a duck, for all intent and purpose, we treat it like a duck".
Have faith, there are alot of knowledgeable doctors out there but personally,
I think the world of Dr. Scott and trust his word regardless.
Take Care and good luck....Julia
n a message dated 7/10/2004 4:38:31 PM Eastern Standard Time,
My 10 year old son does not have a definate diagnosis of moyamoya
but they are trying to decide if he has moyamoya or inernal carotid
artery stenosis.He has had 2 mri/mra's and a arteriogram.both
mri/mra's stated begining stages of moyamoya, the arteriogram was
inconclusive.We have an apointment in a couple weeks to talk to the
Dr.and hopefully I can get my questions answered then but if there
is anyone out there who was diagnosed before a stroke I would
greatly apreciate any info on what led to a definate diagnosis.Right
now I feel like I am just waiting for something to happen to him and
am feeling very helpless and am trying to educate myself about both
moyamoya an internal carotid artery stenosis.I'd apreciate any info
or experiance anyone has had thanks
[Non-text portions of this message have been removed]
- << Previous post in topic Next post in topic >>