Re: [Parenting Children with Moyamoya] Re: I need more info
- Hi, my name is Sara. I am sorry I am so late to
respond. But, I was dx with MM at the age of 9. I am
now 23. I have never had a stroke (thank God!!). I
would think the arterirgram is the best way to dx MM.
When I first started having TIA's, I had an
arteriorgram, and they told my parents I DID NOT have
MM, because it only was on one sidde. Then, a year
later, I had another one, and it had progressed. This
is when they FINALY diagnosed me. I was very luck I
didn't have a stroke while waiting for them to get
their acts together...
I would suggest seeing a doctor who is experienced
with MM. I know Dr. Scott is a really good one. The
reason I suggest this is because many doctors want to
call MM by "other names" when it is in fact Moya
I hope all is going well. Please keep us posted. Thank
you! Feel free to email me if you want. Just be sure
to put MM in the subject so I don't delete it...
God Bless your family!
--- michelle.marengo@... wrote:
> My son was dx'd after a TIA last fall, and thehttp://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
> surgery took place 2 weeks after diagnosis. It was
> 99% sure after the MRI, but then 100% sure after the
> angiogram. Where are you? Are you near Boston at
> all? I would see if he concurs with your
> doctor...the carotid artery is in the front, right?
> Could that be the difference - which arteries it's
> David is 9 months out of surgery now, and just had a
> TIA (after all this time!) We're going back in for
> an MRI this Friday night, but Dr. Scott did say that
> this could happen up to a year after the surgery.
> Wish us luck...
> Take care - and let me know if I can help! Michelle
> -------------- Original message from "dsrm5482" :
> My son was not dx'd until after a stroke, but I have
> a question for
> you to ask the DR's.: what would they do differently
> if it
> is "internal carotid arterial stenosis (but isn't
> that what MM is?)
> and not MM? It seems to me that if there is a
> reduction in blood
> flow to the brain, you need to get it there! (ie,
> surgery). From
> what I've read in the past, surgery has been the
> best treatment for
> the symptoms of MM. Most patients do very well
> after surgery. Your
> note doesn't say what led you to get the MRI/MRa's;
> has he had TIA's
> or seizures?
> To answer your question about has anyone been dx'd
> b4 a stroke, I
> also reccommend the message board at Moyamoya.com as
> there are a few
> whose children were dx'd b4 stroke and received
> Good luck to you and your son. another bit of
> advice I'd like to
> offer is to pray for guidance (& peace!). It sure
> worked for me!
> --- In
> <jcamp9193@y...> wrote:
> > My 10 year old son does not have a definate
> diagnosis of
> > but they are trying to decide if he has moyamoya
> or inernal
> > artery stenosis.He has had 2 mri/mra's and a
> > mri/mra's stated begining stages of moyamoya, the
> arteriogram was
> > inconclusive.We have an apointment in a couple
> weeks to talk to
> > 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
> > now I feel like I am just waiting for something to
> happen to him
> > am feeling very helpless and am trying to educate
> myself about
> > moyamoya an internal carotid artery stenosis.I'd
> apreciate any
> > or experiance anyone has had thanks
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