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Thread: AVM

  1. #1

    Default AVM

    Hello. My craniotomy was 22 years ago. My AVM was in the area of speech and communication. Any one have any special post op stories or issues to share?

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  3. #2
    New Community Member
    Join Date
    Mar 2019
    Location
    Over edges of Boring, OR
    Posts
    1

    Default

    I had an intestianl AVM that leaked almost 5 yrs, then really wreaked havoc with me...my hemoglobin fell to 5.1 hgb....but for 2.5 yrs it kept hidden from doctors until one day, I had an Angel Doctor who searched and found baseball sized AVM in my upper intestinal area...
    it burst in his hands during surgery but was able to remove it. He said I was one sneeze away from sudden death...wow...I'm told you're born with these, but usually found in the brain and or spinal cord area...
    thankful it didn't kill me!...I feel sorry for those who struggle...God Bless you all! I know I was "lucky"...but it was a virtual nightmare having a transfusion every other week for 2 yrs...all those needle pokes...OMG

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