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Re: [Parenting Children with Moyamoya] New Diagnosis

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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 1 of 8 , Jun 3 7:00 AM
      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 2 of 8 , Jun 3 7:09 AM
        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 3 of 8 , Jun 3 7:38 AM
          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 4 of 8 , Jun 3 8:26 AM
            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 5 of 8 , Jun 3 8:27 AM
              --- 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 6 of 8 , Jun 3 11:09 AM
                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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