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173Re: [Parenting Children with Moyamoya] New Diagnosis

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  • Rena
    Jun 3, 2003
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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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