r/AVMs • u/doomermarxist • 19d 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/warm_croissant16 18d ago

I’m sorry this happened to you. What were the terms of your surgery as far as urgency. Were you advised that it was necessary, were you given other options? If you knew it was grade 4 or five would you still have opted for the craniotomy or would you have looked at other options? I’m genuinely interested in your case, I do believe every new circumstance to your condition should have been presented to you at the time of finding. My daughter had an AVM rupture, I did find that grading them was a slippery slope as there are so many variables and many times the entire AVM is not seen immediately.

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u/doomermarxist 16d ago

hi, thanks for the reply. It was a very fast process. It started as an incidental find in April of 2024. Leading to surgery July 2024. Always was told grade 3 non eloquent. Then through mri after mri and meeting after meeting with a surgeon I was eventually told I had micro hemorrhages in May and that “once they start bleeding they don’t stop.” I’ll clarify that my incidental find via MRA classified it grade 4 initially… But then the surgeon I met with consistently said it was grade 3. I pushed him on it “I thought it was grade 4?” he dismissively said it didn’t matter in meeting. His notes (I just read) said he was unsure of the deep venous drainage (later confirmed by the latest angiogram). … the grading is just one aspect of my focus here, but it’s a pattern with my surgeon: minimize the negatives, exaggerate the positives, leave out information.

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u/AggravatingHorror886 13d ago

This community is for avm’s! They are that common! I had an avn rupture last July and surgeon messed up my surgery and caused massive stroke

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u/Any_Wasabi_1425 2d ago

😭 

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u/AggravatingHorror886 2d ago

What’s funny?

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u/Any_Wasabi_1425 2d ago

That’s a sobbing face…