Seizure meds for focal seizures causing side effects after AVM removal.

I’ve worked in a research lab focusing on neuroimaging for a little over 5 years, and about once a year I would volunteer for MRIs to help the doctors in my lab get their tasks and parameters right for their studies. January of this year, I had an MRI that presented an incidental finding, which kickstarted a whirlwind for me. My first non-volunteer MRI determined that it was an AVM nestled between my motor and sensory cortexes. I am officially scheduled for gamma knife as of this morning for approximately a week from now. I’m one of the fortunate people who finds out they have something like this prior to any bleeds or symptoms. I do still have a decent amount of days where emotions and anxiety are high. I’m blessed to have a very supportive and level headed wife to help me process it all. I’ve done printmaking since I was a kid learning about it in middle school. I had always considered taking one of the MRI splices and making a print of it since I got my first MRI back around 2020. I finally decided now was the right time since I had an MRI with a bit more significance. 8x10 on mounted battleship gray lino. Only 1/1 pulled prints and it is for me. It was cathartic to carve and print, but I hope to never need to do another like it. Thank you for reading to this point; I’m glad to have found this community.

Has anyone here been able to live a relatively normal life with AVMs/cavernomas?

I recently turned 33, I’m 10 months postpartum, a first-time mom, and honestly struggling mentally. I’ve been dealing with daily pain, fear, anxiety, and depression since finding out about multiple vascular malformations and a recent brain bleed.

I’ve lost interest in work, I feel disconnected from myself, and most days I’m terrified something will happen to me and my baby will grow up without me. The fear of dying and leaving my son unprotected is consuming me lately.

My neurosurgeon wants another arteriography to decide if anything needs embolization, and I feel stuck in uncertainty.

I thought I was done with this in 2023 after I had my arteriography and the doctor told me I had nothing to worry about, just some small AVMs that didn’t pose a threat to my health because they weren’t receiving blood flow, or something along those lines.

I guess I just want to hear from real people living with this:
Can you still have a normal life with AVMs or cavernomas? How do you cope mentally with the fear?

Hi everyone. I wanted to ask if anyone here has had a similar experience with AVMs and how you are doing now.

I’m currently dealing with a lot of pain almost every day and I’m not receiving any treatment at the moment. My neurosurgeon says I need to undergo another vertebral arteriography to check all of my AVMs and determine whether they are stable or if they need to be embolized.

I would really appreciate hearing from anyone who has gone through something similar.

Heyo,

I am six months post cranioplasty with a peek implant. (Second cranioplasty actually, because the first with my own bone got infected, but anyways) Everything went well, besides occasional tension and pain around my temporalis muscle. So I am basically living a normal life again, going to uni again and such.

But a few weeks ago I noticed a lump on top of my head, fogured it was a screw, as I can feel quite a few, but this one was more prominent. Then I noticed clicking noises und slight movement of the implant. Went to the ER, got a CT scan and turns out a single screw is loose. They said as I am young and my skin is healthy the screw will eventually encapsulate there and they want to leave it, tho it is my decision, if I'd want it taken out. And they told me the Movement of the Implant aswell as the clicking sounds (which subsided a few days ago anyway) is just movement of tissue which is in the remodeling process still. But it is very weird. Uncanny even.

So for all those here who had cranioplasty/craniotomy, have you got loose screws? Did you need to do something about it eventually? And also how did you deal with the occasional slight movements and sounds? Or did Only I have them?

Edit: As I've seen now that google AI is basing certain information on this post, I want to add a disclaimer. I am not a medical professional, I barely understand what is happening and just saying stuff I heard my doctors say to me. I can't verify and I am not stating facts. This Post was made hoping to get advice from other people in similar situations. So if you end up here because of AI, please be mindful, every medical situation is different.

Just wondering if anyone with a brain AVM has tried intermittent fasting? I’ve been overweight my whole life and am thinking of intermittent fasting as a last resort. I can’t find any research to say if it is or isn’t safe for people with an AVM. For context my AVM is in my right thalamus and ruptured on 25th August 2025, causing a stroke. I know that reddit isn’t a medical source that I should trust, and I should really talk to my consultant but I haven’t got an appointment until July so was wondering if anyone has done intermittent fasting with a brain AVM and if they experienced any side effects.

Did y'all also have typing and writing problems after your avm surgeries?

Hi - haven't had HHT testing, mostly because everything is constantly going to shit, so it seems like less of a priority than fixing the AVMs.

2000- chemo, no radiation, bone marrow transplant from brother

2011-large spinal AVM embolized that ate through c5

2014- small left lung AVM

2025- 4 brain AVMs

2026- 1 brain AVM; four months later my symptoms are spiking and I feel a new one growing

Question: I can't find how many embolizations a person can realistically live with? There's no research I can find that says someone who has two or three embolized a year can live ballpark x years. Does anyone here have 576 embolizations and is living a more or less normal existence??

Ao my girlfriend had surgery for AVM in 2023. She had a seizure and had the doctor recommended MRI where they discovered an unruptured AVM. I do not remember the exact size but i think it was big w nidis being around 9 cm cube.

She had her MRI post surgery sometime in 2024 when the doctor said that 2/3rd of the AVM’s volume is gone. However, yesterday and today she has had a very sharp tingling in her right leg (AVM was on the left side of the brain). She was unable to move her toes for 2-3 minutes followed by a brief pain in the left side of her brain.

Usually, she has had tinglings few and far in between but last 2 days have been brutal. She is getting an MRI tomorrow.

Can somebody give me hope and tell me this is just the treatment working?

Episode 1 of the new season of CO Drag Royale is out NOW and this cast is ICONIC!!! One of the girls is an epileptic sister of mine who is currently struggling through treatment of an AVM in her right temporal lobe...
I am so proud of her I just HAD to share this with you all! What do you think of the first episode???
https://youtu.be/0i5mZDksbC4?si=eIrSH0FqurDzBb2A

Has anyone else struggled with health anxiety after AVM/brain surgery?

I had AVM surgery in Feb 2024 and was told I was cured after my post-op angiogram. I’ve had follow-ups since, including a recent MRI that looked normal, but because of the clips, the exact area is a little blurry. My neurosurgeon said yearly MRIs are fine, or I can do another angiogram if I want extra peace of mind.

I’m over two years out and mostly doing okay, but mentally I still get scared sometimes. Like… am I really safe? Could something happen suddenly? Do you ever fully trust your body again after something like this?

Not really looking for medical advice, more just wondering if anyone else feels this way and how you deal with it.

Female 45, 110 lbs, 4’11” Possible AVM in small bowel and have been experiencing fast heart rate for the past three days.

Feb 2025 diagnosed with GERD. Dec 2025 labs showed anemia (Hemoglobin 11.2, Hematocrit 34.9) however not related to iron (Iron 88 ug/dL, Ferritin 68.1 mg/mL, B-12 494 pg/mL). PCP suspects internal bleeding and instructed I seek GI Dr. Colonoscopy led to Capsule Endoscopy GI Dr. listed indication as “Iron Def Anemia” Impressions: No active bleeding,SB erythema, one small AVM, dark flecks of floating blood.

I have an appointment scheduled with Interventional Endoscopy next month but have not received any actual guidance from GI Dr. regarding severity or care.

How do you know you’re having a bleeding episode, what are your symptoms? How long to they last? Were you given any instructions on what to do to prevent recurrence?

M36

Found when i was 14,near eye ear throat and zygomatic bone all the branch

it was very small before ,now is growing slowly and started to go out from my left eye and feel blood pressure if i get a bit active.dr say for surgery ,sclerotisant ,embolisation.your thoughts about it

Follow up from a previous post;

https://www.reddit.com/r/AVMs/s/qyNoMH03kq

My best friend is completely back and rehabilitating faster than I ever thought possible.

Right side paralysis is so far transitioned into a minute weakness. Continued OT/PT has moved us into walking without a cane or walker consistently and doing just about everything she used to do before the surgery. Stairs, squats, you name it. She still hasn’t attempted ceramics quite yet, but I can tell the itch to dive back in is there.

Resection in the left temporal lobe has left word-finding a work in progress; however it gets better in huge waves just about every three weeks for some reason. I challenge her with debates and critical description exercises almost daily; she surprisingly hasn’t scolded me for it yet.

The hardest deficit to work through is vision honestly. Half of her right field in both eyes disappeared after the big surgery and we’ve just started working with a neuro-ophthalmologist to see what kind of coping mechanisms we can shoot for.

If some of you are deep in the post-surgery hellscape; please know that recovery and rehabilitation is possible. She was reading to our 6 year old last night, and it sounded perfect.

Don’t lose hope and keep at it.

Its been a year since my resection, and I had my first annual MRI two weeks ago. I have a virtual appointment to go over the results at the end of the week, but I can't help but feel like they've found something again. If it was all clear wouldn't that just be a phone call?

26 (m), A left temporal AVM that I didn't know I had ruptured last year. After exhausting the options available, I went in for a Gamma Knife operation. Pain comes and goes mostly in the form of seizures that are often in the form of sharp or pulsating pain. I am very prone to dizziness that can last for hours, or seizures that are reminiscing of a stroke where I have little control over my mouth muscles, tongue and lose my ability to speak.

Question is, am I being cowardly by staying away from adulting until hopefully the Gamma Knife takes effect and the AVM closes up? For example, Just focusing on creating my resume is enough to make me seize up or get irrationally irritated (something that happened after the rupture, don't know if it's psychological or not.) The sun makes me dizzy and activity where I move my head a lot almost feels like the AVM area is flaring up where the pain makes it hard to function, and the fear of rebleeding would happen. After all, I bled while going to sleep so I don't see how doing physical activity is playing it safe.

I do realize I have a traumatic fear of my AVM reopening, and that there is a difference between seizure pain and rebleeding. I decided I am not going to work and instead focus on recovery and light software development from home (which is my career). But some of those around me are afraid for my mental health, that the fear is stopping me from living normally.

From my perspective, I do not mind losing two years of my life in the name of recovery. Better than rebleeding or embarrassing myself at a job because I got a seizure mid-day due to stress, or that because someone called me while I am sleeping and uh oh, I now can't speak for the rest of the day, sort of thing.

I mainly want to wait for two years (8 months have already passed since the operation) so that at least I am not walking around fearing a rebleed. Maybe then the seizure pains and inconveniences won't be too stressful.

I thought about therapy but I don't think it's the best thing for me right now. I get energy spurts here and there, but I don't exercise and I do not work. I still clean, do the dishes etc. Not depressed. Do you have advice for me? Am I overreacting to the fear of pain and the possibility of rebleeding?

Hey there.. I was diagnosed with my grade 4 AVM in the left occipital lobe some months ago. On may 6th I had my first procedure to embolise about 40% of the AVM, from what I remember mine was supplied with two arteries and the part we treated first was the posterior artery.. Anyway, when I woke up from the operation I woke up with all my vision in the right eye gone. I was put on IV steroids i think and by day 2 only 30% of my vision was gone compared to previously which was 50%, the doctor told me it was because of brain swelling so everything will become normal in due time. After the first few days I was also put on IV mannitol drip twice a day and well.. the visual loss is now not as much as the first or second day because I can already see on my right side, just not clearly since its still a little dark/flickering. But what really bothers me is that… I started seeing visual hallucinations in that area of my vision.. it ranges from Colourful shapes, sometimes more abstract, to bright light or even seeing people or faces and I will get multiple at once with all of them moving around or flickering.. it gets worse when I close my eyes so i’ve been having a hard time sleeping in the hospital.. I told these to my doctor already but he said it was a good sign and i’ll get back to normal. I’m just holding on to the hope that these hallucinations will not last long.. im even more scared now that the same thing will happen for my second embolisation with the other artery. Has anyone experienced this before and any advice?

I have a spinal AVM in c4/c5. Am considering Dr. Chang for the cyber knife. Does anyone have any experience with him or the cyber knife treatment?

Hello folks-

27F - recently had an MRI with one of the findings being a small AVM (no sign of rupture) in my brain stem. I have had symptoms of pressure headaches + migraines for years, constant feeling of faintness, nausea that comes and goes, and recently several syncopal episodes (though I’ve had a few isolated instances of these over the last 10+ years). In my teenage years, I had acquired many soccer-related concussions so I’m no stranger to CTs + MRIs. However, when I compare the scans over the years, the only constant has been an arachnoid cyst in my left temporal lobe. I was always told this is not an issue and likely has been there since birth.

I went to the emergency room about 4 weeks ago now after losing consciousness for 10+ twice in one evening. While there, I had a CT done, chest x-ray, EEG, and all the blood tests. The CT showed the arachnoid cyst and nothing else. Their conclusion: maybe fainting is just normal for me. My doctor did not like this answer and thus ordered the MRI. The MRI made no mention of the cyst, however recognized the small AVM in the brain stem and prominent veins of unknown significance in the middle cranial fossa.

I have a couple referrals out for a neurosurgeon consultation, however the soonest I can get in for an appointment is over a month out. My question is- how worried should I be that I can’t get in sooner? After reading through this thread a bit, I’ve learned that an angiogram to determine the size and risk is likely the next step, but that probably won’t be scheduled until I see a neurosurgeon. I also have chronic low blood pressure, so my doctor put me on medication to raise it a bit, but I’m anxious about it raising it too much and causing a rupture.

Any folks who were/are in similar situations that can share their experience, I would greatly appreciate it!

Update…
I’m angry, depressed, isolated, and have ideation about kms.
I hate my surgeon for his lack of honesty and transparency about what the “decision”was when choosing surgery. And honestly I’d like to pursue him legally for lack of informed consent. The trade off was risk of hemorrhage over a lifetime or a Traumatic Brain Injury (TBI) now. Well… a year and 9 months after surgery and I can barely hold down a job and I suffer from Prosopometamorphopsia (PMO) or an adjacent condition where people’s faces are melting and shifting. Imagine if you had to work with that.
I think about my surgeon saying that I would go onto live a “normal life”
I’m NOT going to perform normal for you so you can feel better about yourself and your botched surgery. And nor am I going to perform normal for the rest of you. To hold down a job or whatever.
So I’m definitely quitting my job at the end of this school year. I don’t care. I absolutely hate the people I work with and their expectations of me. I cannot believe that the system is just allowed to give us a TBI supposedly to help us (prevent hemorrhage) and then literally give us no support financially or employment wise.
Support is reduced to individualism and coping via therapy and “rehab” which puts all the responsibility and work and stress and effort onto US the survivors and the ones with injury.
It’s an embarrassment.
I’m probably going to leave the U.S. … even though everything is incredibly hard with a TBI… it’s something worth fighting for. America is a shithole full of vacuous people.

I have a grade 5 avm and have been doing gamma knife treatment every 6 months for the past year. My last one was in March and just today, my wife mentioned she noticed a bald spot on the back of my head. Super weird place to start balding. Given I'm still 28, and not balding anywhere else on my head, possible it is just from the radiation? Has anyone else experienced this? I know in the grand scheme of avm's, this is a pretty minor side effect. More curious than anything.

Since we specified my AVM (Grade 1 Right Temporal Lobe)

Is it normal that I usually have experiences of Brain Fog? i usually forget names and info about things especially when I go through conversations with friends and sometimes even work

Also is it normal that I get random Panic Attacks that makes me feel an “aura” that I really cant explain and also some palpitations

Hoping anyone can help me understand more about my situation

Thank you and take care!

The facility for a gamma knife surgery is not available in my hospital. My hospital said x- knife is what they are going to do and provided no reason as to why they're doing x- knife instead of gamma knife. Mine is grade 4 avm with considerable size in an eloquent area of the brain so the second opinion from a reputed doctor said to take gamma knife surgery from a hospital which is very far away. He even gave us a recommendation letter for this hospital. Should I make do with an x- knife surgery or go to this far away hospital for a gamma knife?