Lore
MM.com Benefactor
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My brother Kevin (Cubbie) has Moyamoya
Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
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Hi Tom.
I read the Guest Book post and it brought back painful memories.
If I were to document Kevin's sequence of events prior to a major stroke and even 4 years post stroke, and prior to surgery in May of this year, I can not only top that post I can send chills up your spine, make the hair on your neck stand up and curl with the gross misdiagnosis and treatments and even a major surgery wherein they cut a 5 to 7 inch incision in Kevin's neck and then closed it up because they didn't know what they were seeing when they got in there. It is only by the grace of God and the hands of a brilliant neurosurgeon that Kevin is alive today.
You are absolutely correct when you say that anyone with a reasonable diagnosis in a timely manner should thank God that they were most likely spared the horrors that some have experienced with this disease.
We come from a family of medical professionals who are now deseased. I can only imagine what they might be thinking if they were alive today. It is very scarey and as a result, one must be their own advocate.
I will be the first to admit that medicine is not an exact science and therefore, not a perfect science. However, when I read things like the recent Guest Book post, my blood boils. I don't know if it is the difference in medical school teachings or if it is simply the rarity of the disease, which I don't think is rare at all. I believe it is simply undiagnosed and there is not an emphasis in medical school about the disease.
I'm with you all the way when you say "I hope this site educates both doctors and patients enough to not overlook MM as a possibility".
Thanks for the opportunity to share, or in my case, vent the frustrations of Kevin's gross misdiagnosis, undiagnosis, bazaar treatments and unnecessary surgery prior to the "real" surgeries that saved his life and to remind folks who come to this site that MM is nothing to take lightly and there are neurosurgeons, though not many, that do know about the disease and are competent to treat the disease.
God Bless,
Lore
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I thank God I was diagnosed quickly. (Read 2710 times)
