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Re: [Parenting Children with Moyamoya] daughter's test results

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  • mardanz@comcast.net
    Call Dr. Scott s office at once. The next stroke could be fatal . My husband is a physician and is extermely upset by the advice you have been given. ... From:
    Message 1 of 6 , Apr 15, 2006
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      Call Dr. Scott's office at once. The next stroke could be fatal . My husband is a physician and is extermely upset by the advice you have been given.

      -------------- Original message --------------
      From: "Ginny McCarthy" <vamcc@...>
      You're not being paranoid. We all need to be better advocates for our kids.

      From what I learned there is no reason to wait. In fact, the success of the
      surgery is based in large part on the condition of the patient pre-surgery.

      The progression of the disease is very fast in some patients -- my son's
      left side was fine after he had surgery on the right side. Five months
      later, we were back for the second surgery.

      Please get a second opinion -- and not from a referral of your current
      doctor.

      We're wishing you all the best.

      Ginny
      ----- Original Message -----
      From: "jnokes5" <jnokes5@...>
      To: <parentingchildrenwithmoyamoya@yahoogroups.com>
      Sent: Friday, April 14, 2006 10:39 PM
      Subject: [Parenting Children with Moyamoya] daughter's test results


      > Hello.My daughter's ct perfusion test results came back today.The
      > surgeon says that the blood flow is delayed but there is good blood
      > supply & volume in the affected area of her brain.He also said that
      > good collateral vessels have formed despite severe moyamoya.He wants
      > to wait to do surgery until we notice her having symptoms of another
      > stroke.He thinks that medicine treatment is sufficient for right now.I
      > am still concerned because I know that the disease will continue to
      > progress whether it is quick or slow progression.I am worried that she
      > will have another stroke before the doctor has a chance to do anything
      > about it.Has anyone else experienced this same problem with their
      > child's care or am I just being paranoid about this?Please let me know
      > what you think.Thank you.
      >
      >
      >
      >
      >
      >
      >
      > Yahoo! Groups Links
      >
      >
      >
      >
      >
      >




      YAHOO! GROUPS LINKS

      Visit your group "parentingchildrenwithmoyamoya" on the web.

      To unsubscribe from this group, send an email to:
      parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com

      Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

      [Non-text portions of this message have been removed]
    • Jillayne MacInnes
      The advice you have been given is common amongst the medical profession. However, those that are more educated about this disease strongly disagree. Please,
      Message 2 of 6 , Apr 15, 2006
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        The advice you have been given is common amongst the medical profession. However, those that are more educated about this disease strongly disagree. Please, please, please get an opinion from one of the moyamoya experts. The two doctors with the most experience and expertise are Dr. Steinberg at Stanford and Dr. Scott at Boston Children's. Dr. Steinberg treats both adult and pediatric patients, Dr. Scott treats primarily pedatric patients. It is not at all unusual for people to have to travel far from home to get good/appropriate treatment for MM.

        Here's an explanation for why waiting is dangerous. When MM is present, the body forms the collateral vessels to deliver the needed blood and oxygen supply to the brain. This is a wonderful thing, but these vessels are fragile and simply not equipped to do this successfully over a long period of time. Thus, the risk of hemorrhage and ultimately, stroke. The length of time to delay surgery may vary from patient to patient, but why in the world would you want to wait? The next stroke could be devastating, the one that could change your lives forever. It doesn't make sense.

        I don't want to scare you, but it's important that you understand the possibilities. I know a number of patients who received similar advice, with terrible outcomes. Trust your instincts, and certainly continue to educate yourself about this disease. The more you know, the better armed you'll be to make these important decisions. Surgery is a frightening step to take, but it really is the only way to ensure that a person's blood flow doesn't remain compromised.

        By the way, I am the parent of a 19 year old girl who was diagnosed and had two surgeries in June 2004. We were fortunate to identify the MM and treat it before a devastating event, though she had had two small strokes in early childhood.

        This probably all seems very overwhelming at this point. I encourage you to seek that second opinion from an expert, and to continue with your own education. The moyamoya.com website has a ton of medical information, and a page that talks about doctors with experience in treating this disease. I'd also be happy to talk more with you if you'd like. Never hesitate to ask questions, o.k.? Those of us who have been down this road are usually anxious to help others, even if it's just to offer a shoulder to lean on.

        Warmly,
        Jill


        > ----- Original Message -----
        > From: mardanz@...
        > To: parentingchildrenwithmoyamoya@yahoogroups.com, parentingchildrenwithmoyamoya@yahoogroups.com
        > Subject: Re: [Parenting Children with Moyamoya] daughter's test results
        > Date: Sat, 15 Apr 2006 16:54:03 +0000
        >
        >
        > Call Dr. Scott's office at once. The next stroke could be fatal .
        > My husband is a physician and is extermely upset by the advice you
        > have been given.
        >
        > -------------- Original message --------------
        > From: "Ginny McCarthy" <vamcc@...>
        > You're not being paranoid. We all need to be better advocates for our kids.
        >
        > From what I learned there is no reason to wait. In fact, the success of the
        > surgery is based in large part on the condition of the patient pre-surgery.
        >
        > The progression of the disease is very fast in some patients -- my son's
        > left side was fine after he had surgery on the right side. Five months
        > later, we were back for the second surgery.
        >
        > Please get a second opinion -- and not from a referral of your current
        > doctor.
        >
        > We're wishing you all the best.
        >
        > Ginny
        > ----- Original Message -----
        > From: "jnokes5" <jnokes5@...>
        > To: <parentingchildrenwithmoyamoya@yahoogroups.com>
        > Sent: Friday, April 14, 2006 10:39 PM
        > Subject: [Parenting Children with Moyamoya] daughter's test results
        >
        >
        > > Hello.My daughter's ct perfusion test results came back today.The
        > > surgeon says that the blood flow is delayed but there is good blood
        > > supply & volume in the affected area of her brain.He also said that
        > > good collateral vessels have formed despite severe moyamoya.He wants
        > > to wait to do surgery until we notice her having symptoms of another
        > > stroke.He thinks that medicine treatment is sufficient for right now.I
        > > am still concerned because I know that the disease will continue to
        > > progress whether it is quick or slow progression.I am worried that she
        > > will have another stroke before the doctor has a chance to do anything
        > > about it.Has anyone else experienced this same problem with their
        > > child's care or am I just being paranoid about this?Please let me know
        > > what you think.Thank you.
        > >
        > >
        > >
        > >
        > >
        > >
        > >
        > > Yahoo! Groups Links
        > >
        > >
        > >
        > >
        > >
        > >
        >
        >
        >
        >
        > YAHOO! GROUPS LINKS
        >
        > Visit your group "parentingchildrenwithmoyamoya" on the web.
        >
        > To unsubscribe from this group, send an email to:
        > parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com
        >
        > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
        >
        > [Non-text portions of this message have been removed]

        >
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