r/AVMs

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?

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.

For those who had embalmed their AVM what was recovery like? how long before you got back to your normal daily life?

Same with the full brain surgery to remove it, how long was recovery and did you have any deficits?

The area my potential AVM is in is my right frontal lobe. Luckily neurologist said this is away from areas like speech, memory and motor control. The area mine is in more has to do with personality and emotional regulation/behavior, but still scary.

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

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?

Hi there, got an MRI done and unfortunately they believe they have found a AVM on my right frontal lobe..but they cannot tell entirely, it is just there strongest “guess” so to speak. It could be that or a DAVF or best case something benign but that’s wishful thinking. Anyway, my neurologist referred me to a get a cerebral angiogram. they said that’s the only way to diagnose an AVM since the MRI didn’t pick up on it entirely or it’s most accurate since they can see the live blood flow…However I am so scared!! They puncture my femoral artery and insert the catheter up into my brain and said I’ll be awake for it. I’d be willing to do it if I was put under instead of “conscious sedation”. I don’t mean to be difficult but I seriously don’t know if I can do this if I’m awake. it makes me wish I never found out I potentially have this thing. Anybody gone through the cerebral angiogram while awake? how did it go? how did you feel during and after 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.