# Possible informed consent malpractice **URL:** \ **Category:** Financial & Legal\ **Tags:** stories, treatment\ **Created:** [September 2, 2026, 10:05pm UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321 "2026-09-02T22:05:15Z")\ **Posts on this page:** 10\ **Page:** 1
**Author:** ![BAAS](https://avatars.discourse-cdn.com/v4/letter/b/c6cbf5/32.png) [@BAAS](https://avmsurvivors.org/u/BAAS)\ **Post date:** [September 2, 2026, 10:05pm UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/1 "2026-09-02T22:05:15Z")
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. ---
**Author:** ![JD12](https://avatars.discourse-cdn.com/v4/letter/j/ad7895/32.png) [@JD12](https://avmsurvivors.org/u/JD12)\ **Post date:** [September 3, 2026, 12:44pm UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/2 "2026-09-03T12:44:40Z")
Sorry to hear the outcomes you are experiencing, I can hear your frustration with the whole process. Was your memory negatively impacted, and was your personality impacted? I know these are difficult questions to answer, or certainly would be for me. My short term was impacted by my bleed, but has returned, mostly. In respect to my personality, I think it was changed initially after the bleed largely in respect to emotions and an inability to control, particularly sorrow. I would cry when I saw someone I knew. I can assure you that was not normal for me! That went away over a period of a few weeks to months, as did aphasia mostly. I still experience a touch. I went through a process of determining if craniotomy or Gamma Knife, and ultimately went to Gamma. My initial surgeon did the group consult with his colleagues and determined it was less risk. Had the craniotomy be done there was a high potential of impacting peripheral vision. He was really good in giving estimates on impact, based on percentages. Even my neurosurgeon who was also the GK practitioner gave me a 95% chance of obliteration in two years. I personally took that as 100%! Mine was Grade II by the way so certainly a prime candidate. I took the 95 as a number that was as close as any “brain” Dr. would give to 100! That is just a little summary of some of the info I was given during the decision process. I think it often comes down to the practitioner and how they present the information The two neurosurgeons I dealt with were so down to earth and humble it was amazing. We are all have so different in our experiences with our health care systems. Many are very positive, and some not so much. I think this was a long winded was to say that we are here to support you in AVM related challenges and hear your frustrations in respect to health care. Whatever route you choose for follow up in your case, please make sure you are taking care of yourself! John. ---
**Author:** ![BAAS](https://avatars.discourse-cdn.com/v4/letter/b/c6cbf5/32.png) [@BAAS](https://avmsurvivors.org/u/BAAS)\ **Post date:** [September 4, 2026, 3:01am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/3 "2026-09-04T03:01:01Z")
My personality did change, my mother can vouch… as for memory I think my surgeon meant long term memory… i think not unchanged. My question is how would I know if memory is gone? When I woke up with half my visual field gone, I didn’t notice. I didn’t notice because it was just gone. … part of the reality of brain surgery that is hard to accept and face is that waking up after surgery and feeling like yourself or the same is just, not reliable data. How would you know? You, post injury, are you post injury: the neurons that are dead are dead. ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [September 4, 2026, 8:40am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/4 "2026-09-04T08:40:23Z")
My mum has dementia. Her memory is shockingly bad. While she doesn’t recognise that she has a problem, it’s very easy to test and demonstrate that her short term memory is basically shot. You’re right about one sided blindness: wherever that is broken is such that you don’t even recognise it as gone: I’ve read of other examples of that being the case, even to the extent of the concept of \*Left" or the concept of “Right” going missing, which is remarkable. I think there is an example of that in Oliver Sacks book _The Man Who Mistook His Wife For A Hat_. These are remarkable faults in the brain but I expect neurologists to have a long history of detecting and refining their observations to pinpoint what the underlying excess or deficit or altered situation really is. There are a range of examples of that in Sacks’s book. It does need someone other than you to identify these things. I can tell that my mum has almost no short term memory, her long term memory is severely damaged: much of the last 40 to 60 years is gone. She can’t solve simple problems like if there’s no loo paper on the toilet roll holder or a towel missing from the rail or play a board game. She’s starting to lose her ability to find the right word for anything and when I went on holiday a few weeks ago (rather than seeing her twice a week like usual) she didn’t know who I was when I came back from holiday. So she’s in a mess. But I can tell what’s going amiss, partly because I know her ex-husband’s name or the shared history that seems to mostly be a wasteland, or that when we did her memory assessment in 2023, she did better than me on “list all the words you can think of that begin with ‘P’”! So I’m confident that between a professional and someone who knows you well, it should be possible to assess what’s gone missing. You aren’t the best person to judge it for yourself, it is true. The other thing I want to say about my mum, because what I’ve described is horrifying really, is that she’s loving life. I got her moved into a gorgeous care home near me last December and while she needs help with a bunch of things, between me and the home, we are able to ensure that she’s enjoying life. I’m taking her out for lunch this afternoon with half a dozen of her former work colleagues. We go out about twice a week, escape the four walls for a few hours for a walk, a cup of coffee somewhere different, for lunch with one or two friends or a visit somewhere like an art gallery and she is enjoying both those trips out and her time at home. Life is still good as far as she is concerned and I think that is amazing because it is very easy to get down about being less well, especially any irretrievable situation. Obviously, her memory “helps” perhaps in this regard that she forgets everything immediately but it definitely helps me to be motivated to support her because she clearly enjoys the visits I do and I can also see that she’s having fun on some of the photos the home share on Facebook. I hope these thoughts help. Very best wishes, Richard ---
**Author:** ![natwieg](https://avatars.discourse-cdn.com/v4/letter/n/a9adbd/32.png) [@natwieg](https://avmsurvivors.org/u/natwieg)\ **Post date:** [September 7, 2026, 1:03am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/5 "2026-09-07T01:03:51Z")
My AVM was found incidentally, I was a healthy, perfect candidate for surgery, my AVM was shallow, perfect spot, MRI showed “ right medial frontal AVM” I was told I had a less that 3% Chance of having AVM and less that 1% chance of having a stroke. Again, this was to go perfectly, back to work 4-6 weeks. No, they lost a needle during my surgery, had to look for it, prove wasn’t in me, under anesthesia extra long they say that isn’t what caused the strokes, i guess I am told a clot “probably “ formed on sheath and I had 1 major stroke in cerebellum and the others, I think 3 , were not bad. I had to Learn to talk, walk, can’t use my right side normal and no attorney will touch me bc a stroke is a risk of brain surgery. I played the lottery soon as I could bc at those odds, I was golden, right??? Nope, lost that too ☹ 🤪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! ---
**Author:** ![natwieg](https://avatars.discourse-cdn.com/v4/letter/n/a9adbd/32.png) [@natwieg](https://avmsurvivors.org/u/natwieg)\ **Post date:** [September 7, 2026, 1:05am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/6 "2026-09-07T01:05:19Z")
On intraoperative angiogram sheath… ---
**Author:** ![natwieg](https://avatars.discourse-cdn.com/v4/letter/n/a9adbd/32.png) [@natwieg](https://avmsurvivors.org/u/natwieg)\ **Post date:** [September 7, 2026, 1:24am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/7 "2026-09-07T01:24:45Z")
Also, I was Grade 1, had options, i chose the surgery to avoid a stroke and I had a stroke!! Ugh!! Well at least it is gone and I guess I just had bad luck although my daughter says maybe I have good luck bc it could have ended up worse. ---
**Author:** ![BAAS](https://avatars.discourse-cdn.com/v4/letter/b/c6cbf5/32.png) [@BAAS](https://avmsurvivors.org/u/BAAS)\ **Post date:** [September 7, 2026, 3:43pm UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/8 "2026-09-07T15:43:07Z")
Nat, thank you for your reply. I’m so sorry to hear about what happened to you. And that there were no grounds for a legal case… certainly worries me, for yours sounds solid. If it’s any solace, I too would have chosen surgery for a grade 1. Just bad luck. I just can’t believe. You are clearly struggling with disability, and because of the known stroke risk you can’t get legal assistance… that’s just wrong. I hate this system. ---
**Author:** ![natwieg](https://avatars.discourse-cdn.com/v4/letter/n/a9adbd/32.png) [@natwieg](https://avmsurvivors.org/u/natwieg)\ **Post date:** [September 7, 2026, 8:13pm UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/9 "2026-09-07T20:13:30Z")
I was stunned for sure.. I have worked in the medical field mostly as a medical assistant for 34 years, I believed in the medical system, I chose a reputable hospital, a doctor group that was well known in the St Louis area and did not expect this.. I felt I was still invincible even after 55 years. I found out I am not. I don’t know what to think of your situation. I feel like we have control.. but ultimately have NO control, and that is scary ☹ ---
**Author:** ![Chirstreet](https://avatars.discourse-cdn.com/v4/letter/c/a587f6/32.png) [@Chirstreet](https://avmsurvivors.org/u/Chirstreet)\ **Post date:** [September 8, 2026, 4:17am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321/10 "2026-09-08T04:17:53Z")
I am sorry about your experience and new disability. My son went through a similar situation, he had moved to California from New York where his doctor who had treated him since he was 15 was. He also had a grade 5 AVM in the corpus colosseum, all doctors had advised not to touch it as it was not curable, his doctor did embolize a few times but only to address evident potential bleeding areas and he was always extremely cautious. When he went to California he had a small bleeding which did not leave him with any neurological damage, (he had had similar bleeds in the past), but this doctor in California convinced him he could cure it and performed 3 embolizations in one week, which was extremely reckless, as the brain usually swells and the doctor in ny never embolized right after a bleed. My son had a small stroke right after the 3rd embolization and less than a year later he had a massive stroke that left his right side, including his vision impaired, he also has aphasia and short term memory loss. Needless to say he is now disabled. We did go back to ny and his doctor told us about a doctor in Germany who had come up with a new approach to embolize these difficult AVMs and we sent him the films and he told us he could cure him. He performed 3 embolizations each 3 months appart and was able to compleatly cure him. This was now 8 years ago and he has not had any more bleeds and his yearly angiograms show no change. Unfortunately the damage that was done could not be reversed. We are just thankful that at least we don’t live in fear of more bleeds. Good luck with your legal pursue, I hope you are able to get some restitution or at the least stop this doctor from hurting anyone else.