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Re: [Parenting Children with Moyamoya] Re: I need more info

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  • gosline sara
    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
    Message 1 of 5 , Oct 1, 2004
      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
      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!

      Sara
      --- michelle.marengo@... wrote:

      > My son was dx'd after a TIA last fall, and the
      > 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
      > affecting?
      >
      > 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
      > surgical
      > intervention.
      > 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!
      >
      > Sue
      >
      >
      >
      > --- In
      > parentingchildrenwithmoyamoya@yahoogroups.com,
      > "jcamp9193"
      > <jcamp9193@y...> wrote:
      > > 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
      >
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      >





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