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daughter's test results

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  • jnokes5
    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
    Message 1 of 6 , Apr 14, 2006
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      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.
    • rebecca phillips
      Hello, Both my son and daughter have MoyaMoya and both have had surgery. When my neurologist told us about the disease she suggested that we see a specialist
      Message 2 of 6 , Apr 14, 2006
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        Hello,
        Both my son and daughter have MoyaMoya and both have had surgery. When my neurologist told us about the disease she suggested that we see a specialist right away. After we had talked with our doctor in Salt Lake City and he had reviewed the MRIs he suggested that we do surgery immediately because of the progression of the disease. The progression of the disease in both my son and my daughter was extremely fast. In one year the vessels that bring the blood supply up the back of the neck had completely been dissapeared on my daughters angiograms. I have never dealth with Dr. Scott, but everything I have heard about him has been wonderful. My doctor in Salt Lake City is also wonderful and took very good care of both of my children. I am not sure where you live, but I would definitely get a second opinion. The fact that we acted so fast has probably saved my childrens lives. Dont wait for another stroke, follow your instincts.
        I think every one of us who has been touched by this disease knows exactly how you are feeling about not knowing if you are just being a paranoid mother or not. I know there were several times when I knew that my son had had a TIA, but I wasnt sure if I was just being too cautious. what helped me is that I researched everything I could about the disease and then I followed my heart in every situation. We will be praying and thinking of you all. Let us know how everything goes.

        jnokes5 <jnokes5@...> wrote:
        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.






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      • Rena
        Get a second opinion, go to www.moyamoya.com to find a doctor in your area that has more experience. My son showed no signs of his stroke until he had a full
        Message 3 of 6 , Apr 14, 2006
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          Get a second opinion, go to www.moyamoya.com to find a doctor in your area that has more experience. My son showed no signs of his stroke until he had a full blown stroke. Why do doctors think it's ok to gamble with your childs life?

          jnokes5 <jnokes5@...> wrote: 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.






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          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.


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        • Ginny McCarthy
          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
          Message 4 of 6 , Apr 15, 2006
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            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
            >
            >
            >
            >
            >
            >
          • 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 5 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 6 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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