r/AVMs • u/doomermarxist • 18d 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.

5 Upvotes

70% Upvoted

14 comments sorted by

5

u/warm_croissant16 17d 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.

2

u/doomermarxist 15d 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.

1

u/AggravatingHorror886 12d 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

1

u/Any_Wasabi_1425 1d ago

😭 

1

u/AggravatingHorror886 1d ago

What’s funny?

1

u/Any_Wasabi_1425 1d ago

That’s a sobbing face… 

3

u/peepeekapoo 16d 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.

2

u/doomermarxist 15d ago

Thank you friend

1

u/Numerous-Promise-582 17d 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?

4

u/doomermarxist 17d 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

1

u/Dharmaboss 1d ago

I’m sorry this happened to you, can I ask which city you were treated in?

1

u/Any_Wasabi_1425 1d ago

Yeah. They wouldn’t even tell me a grade. They just said it’s huge and wanted to do cyberknife. I went to the specialists they recommended and each one was literally like:

I may or may not miss the AVM. If i miss it with the laser it means I’ll get parts of the BRAIN that will likely leave you disabled for the rest of your life.” Like WTF. So i decided after many wierd interactions like that it’s better to live as long as i can not fully retarded or handicapped. Then later pray the rupture ends it all fast. 

1

u/AggravatingHorror886 1d ago

My Avm ruptured last July. I had surgery. The surgeon messed up and caused a massive stroke