I am pursuing consultations for informed-consent malpractice, but I have to post for anyone who is in a similar situation or may recognize this behavior in their own journey. My Dr. was eager to operate and downplayed the negatives while exaggerating the positives of surgical intervention.
I had a Grade 4/5 AVM in the posterior temporal parietal lobe that was continuously downplayed as a Grade 3 AVM by the Dr. Grade 3 is certainly within the operable range; Grade 5 is NOT.
From my first MRA, it was determined to be a Grade 4. The Dr. would, in consultation, repeatedly reduce it to a Grade 3, even after my pushback citing the initial MRA. In his medical notes he explained that he was unsure of the deep venous drainage +/- 1 point (making it Grade 4). This deep venous drainage was confirmed and acknowledged by him via angiogram only 5 days before scheduled surgery. That is to say, he had already convinced me of surgery, and only after convincing me did he then document the surgical reality.
The extra +1 point, making it Grade 5, was eloquence. It reached the thalamus, which is eloquent. Again here, the Dr. maintained during consultations that the AVM was “NON-ELOQUENT.” Only in the operation notes published the day of surgery does he write, “eloquence could be argued otherwise,” which the assistant surgeon did. The assistant wrote it as a Grade 5 the morning of surgery, which may be the only reason I have the Dr. in writing saying, “eloquence could be argued otherwise.”
To continue…
In consultation, my Dr. verbatim sold: “here’s what I can promise you: you won’t lose your memory and your personality won’t change.” No surgeon can honestly promise that of a Grade 4/5 AVM surgery in the temporoparietal lobe.
I was consulted on how I would potentially lose my “left peripheral vision.” That eventually led to him stating that I would certainly lose the vision. I’m happy he was semi-honest there. The problem, again, was in the sales pitch: “you’ll lose left peripheral vision” that “could potentially come back, or be permanent” — mired in ambiguity. The predicted outcome was only ever stated as “left peripheral vision.”
The problem is that this was a planned surgery with a planned route of operation, so the eloquent outcomes were predictable. However, I was assured the area was “NON-ELOQUENT” and that “peripheral vision” alone would be lost and “potentially come back.”
Today, post surgery: I have Left Homonymous Hemianopia as well as trans-synaptic retrograde degeneration (i.e., permanent vision loss). These two visual conditions are central here. They were independently verified by optometry via a Humphrey test and retinal scans, but point to the neurological reality: the Lateral Geniculate Nucleus (LGN) on/within the thalamus, which is ELOQUENT brain, was cut/damaged via surgery. You only get trans-synaptic retrograde degeneration (permanent vision loss) from such a cut.
“Left peripheral vision” that “could come back” would have been an acceptable claim IF the AVM surgery was merely within Meyer’s loop or the optic radiations in the temporal lobe, BUT my case involved the thalamus. True informed consent would have stated the eloquence of the area, as well as expected permanent loss of the ENTIRE LEFT visual field from cutting the LGN/thalamus.
Additionally, this Left Homonymous Hemianopia is a DISABILITY. My Dr. told me, again dismissively, “driving will be a confidence issue.” Sure, he’s not an RMV worker, but unfortunately where I live, I can and will lose my license for driving the next time my vision is tested at renewal. Something I was completely unprepared for via downplaying/dismissal.
Finally and ultimately, I want to emphasize that this was an “elective” surgery for an incidental find of an asymptomatic AVM. “Observation” was mentioned and arguably more appropriate for a Grade 4/5 AVM. But by “mentioned,” I mean it really was only a peripheral mention. Towards the final consultations I was told that I had “micro-hemorrhages,” and when I put forth that I had a one-year Master’s program that I’d rather do first, before surgery, I was presented with: “can you afford to wait? With that kind of stress on your shoulders?”
Ultimately, I made a mistake (i.e., the wrong choice — and that’s me being humble and putting it liberally). For I was only one of three decision-makers via shared decision-making. The surgeon held the expertise. My mother was in every meeting. And I was 26 going on 27… it’s ridiculous to say that I am solely responsible for my fate. It is also ridiculous to claim that this was some random biological event out of the control of any one person, an event that simply happened to me. That would be a nice comforting narrative for a weaker minded person who is uninterested in dealing with the reality of an incidental find where the options are observe or intervene. If observe was a real option, it wasn’t given its fair hearing.
Good luck to you though and all of you. I say, AVM is no joke and having a stroke when everything was so perfect is not one either!