Lore
MM.com Benefactor
 
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My brother Kevin (Cubbie) has Moyamoya
Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender:
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Greg,
Great opportunity for you and many others who may be a candidate for EDAS....to contribute to the betterment of medicine and mankind. Takes my breath away.
The Columbia study has been in the works for a while now. I contacted Columbia early last year about my brother Kevin. Of course, it turns out, he was not a candidate for EDAS. For this reason, I have no details on the long-term study as I immediately dropped any further inquiry once I knew Kevin would not be a EDAS candidate. Simply put, Kevin needed bloodflow now or die. Because Kevin needed life-saving surgery, I really didn't get the opportunity to know all the ins and outs of the different surgeries because there were no choices when it came to Kevin. I have learned more about EDAS from the experiences posted on the MM.com board.
The Columbia study is a wonderful opportunity for those who may be a candidate for EDAS. I am thrilled that there is even a long-term study going on. I am interested in the study simply from the surgery option and long-term prognosis view. Who knows, as a sibling, I'm always wondering if I am ever diagnosed with MM, I certainly would like the opportunity of weighing all options. I believe any long-term study can prove or disprove many different things. I find it very interesting.
Do you happen to know if there is any age restriction for anyone interested in the study who may be a candidate? Do you know how long they will follow you if you are a candidate? Meaning is it from the time they establish if you are an EDAS candidate then through surgery and then how long after surgery?
Please keep me posted on your involvement in the study.
Hugs,
Lore
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