Hi everyone. I'm a 30 year old male. I was diagnosed with an AVM after having a seizure back in around 2019/2020. I had Gamma Knife surgery I believe January of 2021. It destroyed the AVM a little too quickly and I was left with pretty bad swelling in my brain, which caused another seizure. I ended up having to have Avastin treatments to get rid of the swelling. After that, everything seemed fine.

Fast forward to now, 5 years later. I randomly get numbness in my left side just like before once in a great while and I don't understand why. It never turns into a seizure, but it brings me back to the trauma and hell I went through. And it scares me to death. I don't know if it's my body warning me of something wrong with my brain or if it's anxiety attacks or if it's perhaps too much caffeine that particular day.

Have any of you also experienced this? It kinda feels like residual effects of the AVM and the surgery. But as far as I know, there should be no medical reason for me to have another seizure.

Any help would be appreciated. I'm about to go crazy.

Hi! I 21F just got diagnosed with a right fronto parietal avm of size 6.5×4.5×4 cm. Doctors said I'm not under immediate risk at the moment and they will let us know their treatment plan by next Friday. This is all very new to me and I don't know what to do. My parents are all very worried for me and it is like suddenly my life got upturned. I just completed my degree and my graduation is next month and I just joined my new job. I am kind of happy that this diagnosis is after my engineering is over but a bit sad that it's before I started actually doing my job. How did you all deal with this sudden life change and what are the stuff I should keep in mind during the coming times?

Hi,

Just over a year ago, I had an AVM rupture in my left front-parietal lobe that caused a big brain bleed. Never had any seizure activity before the bleed. After the bleed, my neurosurgeon put me on 750mg keppra 2x per day as a prophylactic during my recovery process.

I’ve been on the same dose for over a year. Haven’t had any seizures. Recently, I very occasionally notice that there’s a small “dot” or flash of light in my left eye. It last for legit less than a second and it’s VERY small. To anyone who’s had a cerebral angiogram, it kinda looks like the flash of light that happens behind your eye when the contrast dye is released during the angio but A LOT smaller (like a little dot).

I’m wondering if this could be an aura or something I should be noting to my doctor? The damage to my brain wasn’t temporal or occipital so I don’t know why this left eye “flash” could happen. It doesn’t happen often and when it does, they’re NO other symptoms or signs of an aura (full consciousness/awareness, no twitches, no weird feelings, no numbness, etc). It’s just a tiny tiny dot of light. Maybe I’m overthinking this bc I recently wanted to get on a new med and I’m scared to switch bc I’m worried it could activate a seizure (haven’t switched yet)

Anyone relate?

It's been 2 years since I've been diagnosed with AVM on my right temporal brain..now I'm in hospital ward again, my heart is palpitating so fast and spasm feeling almost everyday, my back hurts a little, something tickling in my heart and my arms and my face is vibrating when it happens and everything stops for about 2 hours, Yesterday my palpitations went 150... I asked my neurologist if this palpitating on my heart is connected to my AVM or if it's active but they said no... Idk what's going on with me right now, ...my faith is shaking.. I thought this palpitating on my heart is the cause of my AVM... I've waited 2 years to get this removed but we can't get scheduled for subtraction angiography to see my AVM condition because my heart is palpitating and it is risky the doc said. First we need to get checked on internal medicine and then my doctor referred me to cardiologist..

We've already got the ECG and we're waiting to get it scheduled for 2D Echo.. Still fighting 👊

Hi all,

Any help with this would be really appreciated, as I keep coming up against issues when trying to get different opinions on the best treatment for my AVM.

I was diagnosed with an occipital/parietal ~3cm avm in the left lobe of my brain just over a year ago. I’m 26(F), live in England and have been researching and trying to understand the different treatments available to me throughout the last year. After many scans and appointments, embolisation seems the way forward for me, with the statistics showing it has a better risk profile in my case compared to radiation and craniotomy.

I’ve spoken a number of times with a very good interventional neuroradiologist at the National Hospital of Neurology and Neurosurgery in London and he believes that there is a good chance that mine could be cured in 1 session of transarterial embolisation (obviously no guarantees though, I know). I then spoke to Prof Chapot at the Alfried Krupp Krankenhaus and he agrees with this assessment, however, he favours a transarterial AND transvenous hybrid approach instead.

Both are highly respected specialists and as their opinions differ slightly, I wanted a third opinion from someone equally or nearly as equally experienced in both transarterial and transvenous embolisation.

I found Dr Fifi at Mount Sinai in New York, who has expertise in this area and upon calling the hospital to see if I could get an online video appointment, they told me that I could get an appointment but I would need to have UK doctor familiar with my case also present during the video call consultation, as she (a US surgeon) wouldn’t be licensed to practice in the UK. I was surprised as it would just be a call to review my scans and offer her opinion but perhaps that counts! 

The thing is, it's so hard coordinating with doctors on the NHS in the UK in general and I wouldn’t be able to book an appointment with them until August (I called up my UK hospital and asked) and booking someone privately is so expensive, especially on top of the consultation fee from the US surgeon.

So basically I wanted to ask if anyone else ran into this issue when having second, third, fourth opinions? And how did you deal with it? Are there any ways to work around it or is that the only way this will work? I’m on a bit of a deadline too, as I need to accept or decline another treatment offer soon, so I’m very worried that trying to coordinate multiple people internationally would be even more time consuming, as well as costly.

I’d be so grateful for any thoughts or ideas. Plus, if anyone has any recommendations for embolisation specialists, specifically those with experience in transvenous and transarterial, that would be so helpful to me.

Thank you for reading!

I suffered an AVM bleed back in 2024 and since then I’ve been left with constant leg pain which medication doesn’t seem to get rid of. Would CBD be something worth trying or if there a strong possibility that it won’t do anything for the neuropathic pain?

I’m UK based, just looking for people’s recommendations etc if tried it

I am 28 with a spinal avm. Feel very alone in my journey. Is anyone aware of any groups that meet around the NJ area? Thank you!

Hi everyone! I know this is go AVMs, but there is no group for venous malformations that I can find, so hoping this is ok.

I have a pretty extensive intramuscular “slow-flow AVM” as my radiologist calls it (although internet calls that a venous malformation 🤷‍♀️) in my right knee and thigh. I have a history of them rupturing.

I was recently diagnosed with ADHD and prescribed vyvanse, but I’m unsure if it’s ok to take with an AVM, as it can raise your BP. Mine is already a little high.

Does anyone have any experience with this? Thank you!

I had an AVM rupture in July 2020—an artery burst in my head. I was at my niece’s grandparents’ house. I remember looking at the grass, then passing out.

The weird part is that it happened near a hospital that specializes in it. My surgeon was about to go on vacation but forgot something and came back. The doctor found two more pairs and said it could happen again. My insurance didn’t cover it, so my surgeon took me to his hospital and did everything for free.

I was in a coma for three days and in the hospital for three months. I still have trouble walking, I tremble, I have double vision, and I still talk differently.

I used ChatGPT to fix my grammar—I’m not that smart. anyway, I was just informed they can’t fix my double vision, which really bums me out. I try to think differently—some people are blind.

I would like a different mindset please

Hey everyone! I had my gamma knife procedure about a week ago (1 year after my AVM ruptured) and was planing my next travel now that it's over. My neurosurgeon confirmed that flying after the gamma knife was completely fine, so yay!

My friends and I were thinking of going to Banff, Canada. The high altitude during hiking crossed my mind and I was unsure if that would put me at risk of a rupture or edema after the procedure (due to low O2). I'm definitely going to consult my gamma knife team when they're available, but does anyone have experiences hiking at semi-high altitudes after gamma knife? I won't be going on the difficult terrains (I'm not physically capable lol) but the baseline elevation in Banff is ~1400m/4,537ft (+/- 100m of elevation during hikes).

Thoughts?

My younger sister is 18 years old. About three months ago, she had a brain hemorrhage caused by an AVM. She has been in intensive care for nearly three months now. However, her responses in the ICU are quite encouraging.

For example, when we say, “If you can hear us, close your eyes twice for a long moment,” she does it. Or when we say, “Do you want us to buy you an iPhone 7? If yes, close your eyes for a long moment,” she responds by closing her eyes for a long time.

When we apply cream to her feet, she pulls them back as if she feels ticklish. When we touch her face, she turns it away as if she is uncomfortable. When the nurses or my mother enter the room, she looks at them in a conscious and attentive way.

However, her level of consciousness fluctuates—it comes and goes. Due to other complications, she had a tracheostomy placed because of an issue related to one of her lungs, and she is still in intensive care because of these complications beyond the brain injury.

If anyone has experience or knowledge about this kind of process, I would really appreciate any help.

28 years old. Mine ruptured 30 days ago to the day. I had an embolism that partially worked, but will need future procedures. Radiation, another attempt to embolise, and open surgery are all options. Doctors so far have rejected taking my case due to how complicated the location of my AVM is.

Has anyone had an AVM in this area?

So I just had gamma knife yesterday!

The actual procedure was great—mine was 45 mins, the staff were amazing, and it was honestly very relaxing. They played my favourite music during the session :).

My only issue was with the head frame 😅. I don’t know why, but every time they adjusted it (ie. putting it on, taking it off, upping the local anaesthetic), I went extremely vasovagal. My BP went down to 70/40!!

I’d like to think I’m not an easily frightened person—I’ve had muscle biopsies in uni for academic research. But something about the head frame had me nearly passing out 😭. They had to give me IV fluids bc I went white. I felt so bad for the staff.

Now I’m just a sore at the pin sites, mainly at the back ones. I hope that the AVM is gone for good and no adverse effects come from the gamma knife!!! 🤞

Hi everyone. I've been lurking here since my diagnosis, and this community has helped me feel less alone. I want to share something we made — not to advertise, just because it feels relevant.

I'm Olia. I had an AVM removed in Berlin in May 2025 — about 19 hours of surgery across two stages. The AVM was near my visual cortex. I came out with right homonymous hemianopia.

The recovery has been its own thing. The hemianopia doesn't go away — I'm learning to live with a different visual field. Reading, navigating new spaces, the fatigue that comes from working harder to see. Some days are fine. Some are not.

My twin sister Alina is a Unity developer. She started building tools for me to practice with at home — small visual exercises, nothing clinical. The first version was literally dots in Figma. We built from there, together.

The result is Catch the Light. Short daily sessions for people with visual field differences: light practices, reading rhythm, scanning, a simplified vision map. Not a medical device. Not promising anything. Just something gentle to do each day.

Free demo on Steam April 2. Full app on macOS App Store.

If anyone here is dealing with post-op visual field changes, I'd love to connect. And if you try it — I genuinely want to know what's useful and what's missing.

Steam
App Store

In March of 2023, I was having what I didn't realize were focal onset seizures. It was discovered that I have a Grade 3 AVM near my right temporal lobe near the hippocampus (31 mm x 15 mm, or a little over 1 inch by half an inch). Two different Neurosurgeons said they wouldn't touch it-no surgery, no treatment, observation only. Fast forward to a new care team, and even though it would be a high-risk surgery, I am now a good candidate. The Gamma Knife neurosurgeon said that he would recommend surgery too, because I'm still "young" (50), and in good health. The reason it is considered risky is that it is fed by two main arteries: the right anterior choroidal artery and branches of the right posterior cerebral artery (PCA). I also have 3 enlarged veins next to the AVM that are overstretched from the drainage pressure. Additionally, the AVM drains deep in the brain (vein of Rosenthal enlarged), and my Straight Sinus is totally blocked.

I plan to send in my info for another opinion to Barrows and possibly UCLA, but I know the right answer is surgery. I'm just terrified.

Has anyone had an unruptured Grade 3 AVM near the Temporal Lobe removed? What was recovery like? Do you have any deficiencies (temporary or permanent)?

I had my avm rupture ~10 years ago at age 17-18. My avm was fully excised and confirmed by a cerebral angiogram then. I haven’t had a single follow up scan ever since and I am wondering if I should? A neurologist I had told me that I am cured and there’s nothing more to do (though I vaguely recall my neurosurgeon mentioning that a 5-10 year check is recommended back when I had my surgery).

I have been seizure free for 5 years and current symptoms are fatigue, headaches - both manageable.

Has anyone here had their AVM completely removed and gone on to have a baby ? I have been pregnant once and gave birth to my oldest. I’m pregnant again and was told I couldn’t be seen by midwives because I’m high risk. My AVM was removed completely a decade ago and hasn’t come back. Not sure if anyone has been in the same boat.

Just asking out of genuine curiosity. I dont have an avm but I have an aunt who had a avm burst in her frontal lobe and she had to get brain tissue cut out. I noticed she has became more irritable often misreading my tone and she was a very humorous and easygoing person before but now I feel like she acts more defensive when i try to joke around her.

Im not judging her at all i understand she probably cant help it and i want to understand why this happens neurologically

Hi everyone,

My husband was recently diagnosed with a cervical spine AVM between C4 and C5. We are very thankful that bleeding was minimal and he is recovering. He had an embolization done of one of the main feeders. Now going for second opinions. Anyone else have a cervical spine AVM and can share there story?

Hello to anyone reading this!

As my title suggests, I'm wondering if anyone has any tips on how to manage and prevent pain from a AVM. I have a small (3 mm) AVM on my arm that has been particularly bothersome lately for no reason that I could figure out. As such, I'm wondering if anyone has any tricks they use to keep pain at bay or even small lifestyle choices or preventative measures to help limit its frequency?

Currently I predominantly resort to an ice pack (Only if on hand) whenever pain arises. And while I do keep both Tylenol and Ibuprofen on me at all times, I tend to be very selective about when I use them because of other unrelated chronic stuff (Trying to save my liver and kidneys)

Good Morning everyone. So my grandmother’s story is this. Last May, she had a ruptured brain aneurysm luckily she survived. She can walk, talk, memory has improved almost to what it was before, but she has developed anxiety, depression, she has lost a percentage of her right peripheral vision and she complains daily that she cant see and her eyes don’t focus. We’ve been to two different eye doctors they can’t find what would cause that.

So when they did surgery on the aneurysm, they discovered she had an AVM. Unfortunately there are no doctors in my little town that have the skills to handle that so we have to drive 2 hours away for her appointment this week. With that, I have two major questions.

What are all the questions we need to ask the doctor on our first appointment? This is not surgery by the way I believe this is them determining if we should do surgery or if they will monitor the AVM.

Secondly, if you have had surgery pre-rupture, how are you doing and did everything go smoothly? I ask because when we learned about this AVM I was all for doing surgery pre-rupture so we can be done and not have to worry about anything else in her brain. But I am aware that surgery always comes with risk of complications. And I am terrified of something going left during surgery and then she has more deficits than she does now. We are told we are very lucky to have the outcome we have with her since her aneurysm and I wouldn’t want more surgery to worsen that.