r/AVMs

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.

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?

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?

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.