Anybody out there with an incidental discovery of a brain AVM feel like they were coerced into surgery and struggle with deeply profound regret from the life altering consciousness altering surgery?
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So sorry to hear you are struggling with the consequences. I canāt say I have been where you are as my neuros always said surgery wasnāt an option for me. They offered me Gamma Knife but said it was really risky. I think if I had insisted they would have done it but I didnāt. I hope things improve for you.
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Thank you! And if you didnāt go with gamma knife are you just āobservingā?
Yes I am. Not always easy, but what other choice is there huh?
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I mean, I āchoseā surgery and regret it. Seems like thereās no good options sometimes. Would you mind sharing your experience? Have you had bleeds? Whatās observation been like?
No problem at all. I found out I had an AVM when I was 27 and went for a āroutineā MRI to look at my ventricles. At 14 I had developed hydrocephalus and was shunted. At 17 the shunt had to be revised when it blocked. But this was the late 80s/early 90s and the only scans were CTs. The docs could see a āshadowā but couldnāt tell what it was. Turned out to be a congenital AVM in my cerebellum and it had caused hydro cos it blocks the normal CSF escape routes. Since the AVM is deep, big and near essential structures the docs wonāt touch it. Last December I had a suspected minor bleed but scans didnāt confirm it. Living with AVM can be scary but I try not to dwell on it. I do my best to keep busy and healthy and fortunately Iām a pretty positive person - about this anyway.
Lulu -x-
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Hi BAAS,
Iām presuming thatās what happened with you? You had surgery and are having side effects?
From my side, my AVM was found accidentally. I went in for a scan for an ear ache and walked out with a brain AVM. It was graded small and non eloquent area and to be left alone which made me very happy. Fast forward to 6 years later, after having the AVM rupture (still did not have any form of treatement), getting married and the birth of my children, AVM changed to having more blood vessels feeding into it because I was having micro bleeds several times a year and developed venous hypertension. Eventually I conceded to embolizing, but I wasnāt happy about it. I wasnāt being pushed into it by my doc (he really was amazing), but by family members and I thought it would be best for my children. But thankfully, my own senses kicked in and drowned out the voices. I had booked the procedure but I just asked God to give me a sign Iām doing the right thing and Covid hit and we were in lockdown - couldnāt be clearer than that for me! Cancelled procedureā¦ I still get micro bleeds and Iām in pain everyday, but is rather deal with that and grateful for it than not know what could happen if we interfered with it.
I hope youāre ok, and if not, I pray that whatever it is gets better for you. Iām not a therapist, but if youāve already had surgery, and youāre feeling worse off, perhaps if possible, speak to a professional psychologist to get through these parts. Whatever it is, you still were brave to go through with it and dealing with the aftermath. Thereās a long rant here somewhere by me a couple months ago and a few people suggested I speak to a professional and it helps me.
Wishing you the best and here if you need to chat!
Best wishes,
Suraya
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Hi, I donāt know with any level of certainty if any of my deficits were caused by my AVM removal surgery. All I know is I was having a Big Stroke. I went into a coma for 8 weeks and when I woke up my left side didnāt work so good anymore. It took me two years to re-learn how to walk while I had multiple doctors and therapists telling me I would never walk again. But I can walk with or without a cane now
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Hi Suraya,
Thank you for your great story!
Love that you took the universeās sign.
Yes, I had surgery and regret it. I had no prior bleeds and surgery was the āeventā
Unfortunately, my story is more that Iāve lived a life dismissing & suppressing my gut feelings. My gut said not to go with surgery. Instead, I let the surgeon, the statistical narrative, & my family push me into it. Now even a year and 5 months later I still donāt feel like or believe that Iām the same person. My experience of reality has completely changed. The primary issue is visual: i experience fluctuating filters/styles on reality . itās especially apparent with peopleās faces. I can recognize everyone but everyone including myself look off in the same way ( and this shifts, mostly weekly/monthly). I feel like Iāve seen nearly a thousand different realities since surgery.
The narrative the surgeon offered was that since the area was non-eloquent & capillaries were non existent, surgical removal wouldnāt be such a big deal. Even saying that my āpersonality wouldnāt changeā āmemory wouldnāt be affectedā ā¦ I feel like it was way over sold. Even though I asked pointed questions about the risk of visual processing & faces prior to surgery, the surgeon denied me. Even after surgery when I aired my symptoms he denied that it could be a āstructural issueā and referred me to see a psychologistā¦
Hi 
Happy for you!
Youāre strong
Hi, if thereās any misspellings or miss punctuation, itās because Iām better off talking typing instead of typing with my fingers. Iām 55 and after all Iāve been through my AVM was found this year by accident. I canāt believe that I had this my whole life the usual bumps in rotten boyfriend, a rotten husband, bumping my head as an adult I think of all the times and wonder how it didnāt rupture
I felt pushed into it mainly by Family I was scaredI was a grade one in a great area great for surgery but also my family didnāt wanna wait and find out three years later that it didnāt work if I did the Gamma knife or they certainly didnāt want me having a ticking time bomb in my brain and I granted I couldāve had a stroke at any time. I had my daughter when I was 29. I had my son when I was 37. I figure at that āold ageā of having children. I just find it very hard to believe that this has been here since I was born.
So the surgery was scheduled for September 22. I thought that was a good day because 2 was my favorite number. In the meantime, Iām trying to be brave. Iām wondering what is really going on in my brain. I go back-and-forth between canceling it and have an anxiety. I have a prescription for Xanax as needed. Iām very stressed out and then I get a letter in the mail that my doctor is moving to Texas from out from Missouri.. so my surgery is canceled because heās not doing them in September and heās not doing them in August and itās I think I had a week left so it was the end of July when I got the letter so I called at first, I thought maybe it was a sign and then I called throwing a fit and I guess other people did also and he offered me some dates in August. My family thought that I needed it done so I went ahead and scheduled for August 18. The surgery went well but during the angiogram, I had three strokes, two minor one major and I had my right side wouldnāt work and I was right handed so I spent from August 27 to September 10 in rehab and then Iāve been going to therapyspeech, physical and occupational since. I got graduated from speech and I didnāt think occupation was helping me much. The best I had was physical and if you have physical therapy and you have trouble walking, I highly advise The. I donāt know what they call it but the trail thing on the ceiling and you get in a vest and youāre hooked to it so you can actually walk and do steps freely, but unable to fall I forget what they call it. My therapy place at that and it helped me so much. Also, the sit down elliptical was very helpful.! I am walking now but I walk like Iām drunk. Iām not back to work. Iām trying to convince them to get me some part-time hours, but Iām waiting to hear back. I got denied long-term disability because they found it in the end of February, I start my new job in March and I was effective with my insurance my benefits April 1 so theyāre considering me pre-existing and of course you know with insurance you never win. I went to a big hospital. I thought I was gonna be out from 4 to 6 weeks. I had the stroke during the angiogram after the surgery and now itās been four months now closer to it.. I donāt know if I would change anything. I regret having the surgery, but I will regret not having surgery because I know itās there. It was there so I think if I hadnāt had the surgery and having chosen to watch it or to have the gamma knife.m, I would have regrets as well. I think you always wonder what if or I do anyway.. I did what I thought was right at the time, but I didnāt have the feelings of a bad omen and I wonder if I had went with my feelings of things would be different. I donāt know. Iām on my way to therapy now, so I have to go. I hope you do well but therapy is important so make sure that youāre giving it your all!
Sincerely,
NH
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Greetings,
I had an embolization and craniotomy for an AVM in July of 2024, after having a brain bleed. It was quite a shock, as I was 69 years old and did not know I had an AVM in my cerebellum until then. Since then, I have had an embolization to treat a AVF fistula in the same area. I am very happy that I had the surgery because I doubt that I would have survived a second brain bleed like I had if I had not. I had double vision for months after my craniotomy, but it cleared up after six months or so. After my fistula embolization, in October 2025, I have had some vision problems such as muted colors and failure to recognize people I know. Itās also taking me a bit longer to get my walking back to where I am used to. But both conditions are improving ( with great Physical Therapy and Occupational Therapy) and I have no regrets for having had the surgeries. I would do it again in a heartbeat.
PG
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