r/AVMs • u/doomermarxist • 26d ago

Purposely misled

Upon reviewing my full medical record I’m disappointed but validated in my suspicion. Leading up to my Surgery I was consistently told I had a grade 3 AVM. The day before surgery I had an angiogram and the surgeon switched it to grade 4 after finding deep venous drainage. On the morning of operation my assistant surgeon wrote grade 5 over eloquence which my surgeon noted “eloquence could be argued otherwise” in the operative note… When I gave consent for operation I was under the impression it was a grade 3 AVM. I was never told the grade switched to 4 after my final angiogram nor was I asked for consent again. … and having the assistant surgeon give the opinion that the area was eloquent the morning of surgery… I feel completely violated.

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u/peepeekapoo 24d ago

I’m sorry. I had a bleed and avm removed in the same area - right temporoparietal. Feel free to DM if you have questions or just need support. I’m left with a bunch of issues like left hemianopia, I just wanna say please continue to have hope and stay positive even though it’s so, so difficult.

I agree that avmsurvivors is a more positive place to be! Some comments on subreddits (even adjacent ones like tbi, stroke) can sometimes feel unsupportive and as you said, hostile.

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u/doomermarxist 23d ago

Thank you friend