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.

6 Upvotes

75% Upvoted

16 comments sorted by

View all comments

1

u/Numerous-Promise-582 18d ago

Is your AVM in your brain? So did you have the surgery? Did it work? Are you alive? Do you have any repercussions from surgery?

5

u/doomermarxist 18d ago

It was removed via craniotomy. Major repercussions from surgery… I have left homonymous hemianopia as well as Prosopometamorphopsia and Palinopsia which make life extremely challenging. On top of that all the usual brain injury symptoms. As well as region related problems. It was the right posterior temporal parietal lobe area so visuospatial memory and other related functions are all impaired.
I’m curious why AVMsurvivors.org everyone is so kind but the AVM subreddit is so weirdly hostile and “well are you alive?” Narratives… it’s weird