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295Re: [Parenting Children with Moyamoya] Moyamoya and what to do....

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  • LONNIE NORMAN
    Dec 3, 2003
      Hello Li, I have not had the pleasure of seeing Dr. Scott. I am from Florida so we see a doctor at the University of Florida ( Shands) Dr. Mickle did my daughters surgery when she was 11mths old in 1998 When she was diagnosed no one in Florida knew anything about this disease I was not even aware of this website my husband and I tried to get as much research on this as possible but back then there was not much on Moya Moya. Today there is a lot of information on this. My daughter suffered a severe stroke after the surgery but before they were not visible however when the doctors looked a the angiagram they said she should be paralized but she was not. The stroke set us back a great deal however we recovered from it and then in 2001 Dr Pincus did the surgery on the other side of the brain and she had another stroke which the doctors said she would not ever recover from she lost her speech for the second time she was not able to eat, drink, swallow, she could not even use her
      tongue. it also made her unable to sit alone walk without someone holding on to her. She is now 6yrs old she is able to talk just like a 3yr old she can walk, run, and do most things a normal child can do. We do have to watch her because anytime she gets very upset she will have a TIA most of the time they only last 5mins to 6hrs. we have to watch other children around her so they do not hit her head because we were told that that could be very harmful to her oh by the way she can also now eat on her on drink out of a cup without help. I only have to feed her when she gets sick and won't eat. I have heard a great deal about Dr Scott and if he is going to do the surgery then I say go ahead now before something happens and he can't do the surgery. We were told if Samantha had a stroke before surgery they would not be able to do it if she was sick they would not be able to put her to sleep. So go ahead do it. GOOD LUCK WITH THIS you and your family are in my prayers. GOD
      will take care of his angels.
      Sandy
      lnorman88@...

      mdkempes@... wrote:
      Li,

      I am trying very hard to figure out how all of this came about for you and
      your daughter. You said she had headaches and trouble seeing and that she had
      an MRI which diagnosed her with Moya Moya. Has Dr. Scott seen the MRI films
      from the MRI? Was it a Neurologist or Neuro-Radiologist who diagnosed the Moya
      Moya?

      I am not a doctor and cannot tell you what to do, but I can tell you how I
      feel. When my daughter was diagnosed with Moya Moya, one of the top doctors in
      the hospital told me, "She has not had a stroke yet, we should just watch and
      wait". In otherwords, just keep waiting until she does have a stroke, and then
      we'll think it's serious enough to do something about.

      There is no way to know how long it might have taken for my daughter to
      suffer a stroke, ....but I know what the results of a stroke can be, and you can
      learn alot more from parents whose children suffered strokes before they even
      found out about the Moya Moya and had the opportunity to fix it. Many children
      are still trying to get their lives back to normal because they did have
      strokes and suffer brain damage before having the surgery. After having the
      surgery, they have had no more strokes. Strokes are serious and cause permanant
      damage to the brain. People can lose the ability to walk, talk, use te
      bathroom, think, read, and all kinds of very serious injury to the brain.

      For myself, our family, I felt like we were blessed to know ahead of time and
      have the opportunity to fix it before my daughter had a stroke. No one wants
      their child to have brain surgery, but I promise you and every other parent
      on the Moya Moya website would tell you, that having Dr. Scott fix it as soon
      as possible is the only thing that makes sense. If you wait, the risk of a
      stroke increases with each day.
      You do not want that to happen to her. You don't want her to have surgery,
      but the alternative of not having it is worse.

      Your pediatrician knows you are scared and I am sure he was trying to calm
      you down. The best person to talk to is Dr. Scott. Dr. Scott has seen many
      many many children with Moya Moya and he knows how serious the situation can get.
      Also, if he saw your daughters MRI, he knows how important it is to have the
      surgery or I promise you he would not do it. When he first saw my daughters
      MRI, he said he did not think the surgery was necessary right away but that we
      should monitor it. Later, after the radiologists at his hospital reviewed
      the MRI scan and met with him to review it, it was decided that there was not
      enough blood flow and we should go ahead and do surgery. Dr. Scott initially
      put it off because he did not think it was necessary. If it was not necessary
      for your daughter, he would tell you that.

      Moya Moya is not a tumor. It is not like removing a growth from her brain.
      It is very simple. They will make an incision on her head in front of and
      above her ear, they will make a small opening in the bone, he will take an artery
      that is right there in her scalp and separate it from the other tissue on her
      scalp. He will use a special microscope and take the artery through the hole
      to the surface of the brain. He will very carefully open up the outer
      covering of the brain (just a thin covering called the dura). He will use tiny
      little stitches to attach the artery to the surface of the brain, barely even
      touching the brain, then close everything back up.

      Please remember, your friends are not doctors and they do not know what Moya
      Moya is. Moya Moya will continue to develop and cause arteries that carry
      blood to the brain, to close. If you don't create the new blood flow pattern by
      attaching the new artery, then eventually, maybe a month, maybe 6 months,
      maybe a year or even 2 years, the blood flow will reduce to the point that your
      daughter has a stroke. I know you don't want this to happen.

      I did not want to wait because it was a gamble I was not willing to take. I
      cannot predict the future and I would have no way of knowing how much time my
      daughter had before she would suffer a stroke. I could not gamble with her
      health. The better of the two options was to fix it so we never had to worry
      about it again. Now I can
      relax because I don't need to worry any more. I can watch her run and play
      and laugh and know that she is safe.

      Li, I really don't want to scare you....but I must say that I get scared when
      you say that you are thinking about not doing it or that your friends or
      family are suggesting that you not do it. Everyone knows that you are scared and
      they are worried about you also and I am afraid that they are saying the wrong
      thing, to try to make you feel better. They need to understand Moya Moya
      before they tell you to not do the surgery and if they do understand it, I know
      they will tell you the same as I am telling you....fix it now to protect her
      future!

      I am sorry if I scared you more by saying this....I would suggest that you go
      to the "ParentingChildrenwithMoyaMoya" website and read more of the stories.
      These parents told me in August...."Get it done and get it done NOW!!!" I
      took them at their word and I think you should too. Dr. Scott won't let you (or
      him) do anything that is not necessary to keep her safe.

      I know Michelle will help you since her son had surgery on both sides. Read
      more of the webgroup messages and I think it will help you understand that
      there really are no options.

      Take Care, I am praying for you all.

      Julia


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