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Re: [Parenting Children with Moyamoya] New Diagnosis

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  • Rena
    Olive, www.moyamoya.com is a Great site for support and info. There are links to other sites, however I m not sure if the numbers are posted on any of them. I
    Message 1 of 8 , Jun 3 5:43 AM
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      Olive,
      www.moyamoya.com is a Great site for support and info. There are links to other sites, however I'm not sure if the numbers are posted on any of them. I do know that Dr. Steinberg at Stanford University Hospital has done over 146 surgeries on Moya Moya patients in the last 10 years. He will be doing my 11-year-old son's surgery on June 18th.

      You found one great support group here and the one I listed above will help too. I hope this helps you on your search for help and information. Feel free to post any questions on either site. Everyone is great about help when they can.
      Rena

      olive_turley <no_reply@yahoogroups.com> wrote:
      My niece of 20 months was diagnosed with Moya Moya yesterday in the
      UK. Do any of you have websites for US treatment centres with # of
      operations carried out etc?

      Thanks,
      Olive.


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    • olive_turley
      Rena, Thanks for this. Sorry to hear about your son and the best of luck for june 18th. Are you based in the US or are you travelling to the US for surgery?
      Message 2 of 8 , Jun 3 7:00 AM
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        Rena,
        Thanks for this. Sorry to hear about your son and the best of luck
        for june 18th.
        Are you based in the US or are you travelling to the US for surgery?
        Do you know of any hospitals in Europe?

        Also, if you don't mind me asking, do you know if the surgery
        recommended prevents the veins narrowing in the future i.e. If my
        nicec has this surgery, will it stop her having any more problems? I
        know you are not a doctor but some general advice would be great as I
        can't seem to make this out from all the websites.

        Thnaks,
        Olive.
      • xiaoming54
        Hi Olive -- my five year old son was recently diagnosed with moyamoya & operated on by Dr. Scott in Boston only 3 weeks ago. [We live in Massachusetts so it
        Message 3 of 8 , Jun 3 7:09 AM
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          Hi Olive -- my five year old son was recently diagnosed with
          moyamoya & operated on by Dr. Scott in Boston only 3 weeks ago. [We
          live in Massachusetts so it was most convenient.] Dr. Scott has an
          FAQ page that answers a lot of questions -- it helped me a great
          deal. Here is the link: http://www.boston-
          neurosurg.org/amphitheater/online.html

          My son is doing fine post surgery. But I understand it will take 6
          months to a year for the arteries to grow.

          Ginny
        • Rena
          Olive, There are two different types of surgeries. The one Ginny is talking about (indirect) is easiest for the doctor to preform, is very effective, and does
          Message 4 of 8 , Jun 3 7:38 AM
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            Olive,
            There are two different types of surgeries. The one Ginny is talking about (indirect) is easiest for the doctor to preform, is very effective, and does just as she says, takes 6 months for the arteries to grow. The surgery my son is having (direct) is more complex for the doctor, needs the patient to be a good candidate, however you don't have the 6 month wait.
            I live in Colorado, USA and am traveling to California for the surgery. Sorry, I don't know of any hospitals in Europe. However, I have learned if the doctor can explain what surgery they choose to do and why they choose it then you have a good doctor. Since this is a rare disorder and depending on how severely it has hit you might not be able to look around, it is very important to have the surgery as quickly as possible without risking health.
            As far as my research has shown the surgery corrects the problem. What the doctors are doing is (indrect) giving the body a way of rerouting the blood past the affected area or (direct) rerouting the blood supply past the affected area themselves. Just ask your doctor everything you can until he/she is able to put your mind at ease. Check the web site Ginny sent you as well as the one I sent, I have been researching this for 6 months while waiting for doctors and insureance to figure out what too do. But I still don't know everything, the websites really helped me, and talking to the doctors were the greatest benefit.
            Good luck my prayers are with you and your family,
            Rena
            P.S. feel free to contact me at my email address: oneofakindco@...

            olive_turley <no_reply@yahoogroups.com> wrote:
            Rena,
            Thanks for this. Sorry to hear about your son and the best of luck
            for june 18th.
            Are you based in the US or are you travelling to the US for surgery?
            Do you know of any hospitals in Europe?

            Also, if you don't mind me asking, do you know if the surgery
            recommended prevents the veins narrowing in the future i.e. If my
            nicec has this surgery, will it stop her having any more problems? I
            know you are not a doctor but some general advice would be great as I
            can't seem to make this out from all the websites.

            Thnaks,
            Olive.


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          • olive_turley
            Thanks for all your help. I ll pass onto my sister and her husband. Her daughter is having more tests today and tomorrow so I might be back with more
            Message 5 of 8 , Jun 3 8:26 AM
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              Thanks for all your help. I'll pass onto my sister and her husband.
              Her daughter is having more tests today and tomorrow so I might be
              back with more questions.
              Olive.
            • djkrn2000
              ... the ... of ... I have read all of the messages attached to this one, and I am sorry for your neice s diagnosis, but the good news is that the treatments
              Message 6 of 8 , Jun 3 8:27 AM
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                --- In parentingchildrenwithmoyamoya@yahoogroups.com, olive_turley
                <no_reply@y...> wrote:
                > My niece of 20 months was diagnosed with Moya Moya yesterday in
                the
                > UK. Do any of you have websites for US treatment centres with #
                of
                > operations carried out etc?
                >
                > Thanks,
                > Olive.

                I have read all of the messages attached to this one, and I am sorry
                for your neice's diagnosis, but the good news is that the treatments
                are very effective.

                My son was 13 when diagnosed and underwent the indirect
                approach.That was 2 years ago, and yes it does take 6 months, to a
                year for the vessels to fully develop, but we started seeing
                improvement immediately. The TIA's became less and less frequent,
                and less and less severe. His last TIA was about 6 months ago, and a
                year before that one. He functions like a normal boy of age 15 now,
                with the exception of wearing a helmet for many activities, that
                other boys of that age might not.He was not a candidate for the
                direct approach because of the location of his blockages, and we
                could not be more pleased with the Dr. the hospital, or the
                procedure. the Dr. fully expects him to get to a point where he has
                no more Tia's at all.

                He has a beautiful voice, and is very involved in Chorus, Jazz
                Choir, Madrigals, etc, and I thank God every time I see him, or hear
                his voice that we were able to get help for him. I hope your neice
                gets the same quality care and does well.

                Please feel free to contact me at my email address if you would like
                more information. djkmomo3@...

                Debbie Kasper
              • chbrigger
                Dear Olive, I have two children with moyamoya and they both had surgery with Dr. Scott in Boston. I would recommend calling him, as he could tell you if there
                Message 7 of 8 , Jun 3 11:09 AM
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                  Dear Olive,

                  I have two children with moyamoya and they both had surgery with Dr.
                  Scott in Boston. I would recommend calling him, as he could tell you
                  if there are any hospitals in the UK. I do believe he has had
                  patients travel from there to Boston for surgery. He is absolutely
                  wonderful and has performed the surgery many times with much
                  success. My two are about two years from surgery and doing great, no
                  TIA's or headaches. Please feel free to ask more questions as they
                  come up, this is a great group for support. Here is Dr. Scott's
                  website and I believe the phone number is there, if not let me know
                  and I will get it to you.

                  http://www.boston-neurosurg.org/amphitheater/online.html

                  Good Luck! Heather



                  --- In parentingchildrenwithmoyamoya@yahoogroups.com, olive_turley
                  <no_reply@y...> wrote:
                  > My niece of 20 months was diagnosed with Moya Moya yesterday in the
                  > UK. Do any of you have websites for US treatment centres with # of
                  > operations carried out etc?
                  >
                  > Thanks,
                  > Olive.
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