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Moya Moya for 25 years now (Read 3368 times)
joeblack357
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Groton, USA, CT, Connecticut
Gender: male
Moya Moya for 25 years now
May 7th, 2004 at 7:35am
 
Hi Everyone, just found this community last night, and all I can say is WOW.  First off I would like to thank DJ for all his hard work on this website, it's amazing.

Now for the big info.
My wife of 10 years as of today was diagnosed with Moya Moya at age 9 or so.  She was born with a hole in her aorta and had her first stroke at age 6 during her surgery to repair the hole.  The doctors did not diagnose her moya moya until later due to the fact that it was truly considered rare in the late 70's.  Another stroke followed at age 10, and her last full blown stroke was at age 19.  She has not had any kind of surgery for her moya moya becuase she was always told that her moya moya was unoperable.
Yesterday may be the start of a new direction for us though, as we had a spect scan done, transcranial doppler and ultrasound.  It was a long day of running from clinic to clinic to say the least, but we are looking forward to getting the results next week.
Her moya moya has been so quiet since she was 19 that I honestly don't know what to think.  Aside from the occasional TIA she's had no problems, and we feel very fortunate for this.  Needless to say I still worry everyday though.  We have two wonderful boys ages 6 and 9, and I am in the Navy.  In July I will be getting out of the Navy and entering the coastguard.
Thank you everyone for the great sharing that you have done here, and I will keep you updated.
Joe
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janicetedd
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Waterford, MI
Gender: female
Re: Moya Moya for 25 years now
Reply #1 - May 8th, 2004 at 11:02pm
 
Hi JOe,

I am so glad you found this website.  From my own experience with my sister -- mm led to a sever stroke.  If I had this webiste earlier I believe the surgeries could have prevented the severity.  That is history.  I am glad you are investigating all possibilities.

Good luck - let us know. What is your wife's name
Janice
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Mar
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Re: Moya Moya for 25 years now
Reply #2 - May 9th, 2004 at 8:46am
 
Hi Joe,

Welcome!  Smiley

I couldn't have said it better than Janice did. Sooo glad you're expolring the possibility that your wife may be able to have the surgery. They are learning more and more about moyamoya and saving lives every day and we won't give up. Your wife and family are in our thoughts and prayers.

Please keep us posted.

God bless,
Mar
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joeblack357
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Groton, USA, CT, Connecticut
Gender: male
Re: Moya Moya for 25 years now
Reply #3 - Jun 8th, 2004 at 4:59pm
 
Hiya again everyone
     Sorry we have been out of the loop for so long, been rather busy here.  Getting ready to move yet again in a couple of weeks, and all of TJ's appt's it has been rather hectic.  Great news today though with Doctor Gorman.  The spect scan and other tests show that TJ's brain has compensated for the previous blockage and that the blood flow is sufficient.  So we will be going in for annual MRI's unless things start going bad.  Thanks again to everyone here for there support.
Joe
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