AVM Survivors Network

My story

On 26th May last year at the age of 19, I went to work as usual. I have no memory of this day but I am told that during my shift I asked to leave and go home as I had an awful headache, I got home at around 6.30pm and started vomiting and my headache was worsening. At around 8pm I went into a seizure lasting approx 40 mins, my GP came and called an ambulance. I was taken to Naas General Hospital where my family were told there was little hope and to prepare for the worst.

I had numerous scans of my brain which revealed I had an intraparenchymal hemorrhage (bleeding within the functional tissue of the brain). I was transferred to Beaumont Hospital where I underwent an emergency right temporal craniotomy (surgical intervention for the bleed). I was then placed on life support for a further 5 days. It was originally proposed that I undergo radiation to shrink my AVM, which had caused the hemorrhage and subsequent seizure, however this changed due to an aneurysm that was forming and instead on the 18th June I had a further surgery on my brain, a resection to remove the AVM that caused the prior events.

Unsurprisingly I have little memory of these events or my 5 week stay in Beaumont. Today I struggle with my short term memory and often feel like I am in a dream when I think of these events and sometimes think this didn’t happen to me and I find that confusing, as part of me feels like I am going to wake up and everything will be back to normal. I am starting to get myself back on track and I am hoping to get back to college using the aids and strategies i have been taught in order to complete third year and continue on with my studies.

Has anyone else here lost their memory and if so does it improve enough to the point where you can almost be back to the way you were before? I’m sick of hearing every brain injury is different from my psychologists who never give me a straight answer. I’m also scared of going out and drinking because so many people have told me I need to be so careful but no one ever tells you what your limits are, I’m lucky that I’m no longer on Keppra for seizures and only experienced the one but I don’t remember any of that, my fatigue and my memory are really the main things that affect me daily when my fatigue isn’t managed my memory is terrible, I haven’t talked to anyone with an AVM who experienced any of this and I find it really lonely to feel like I’m the only one who’s experiencing this and no one can give me an answer or even relate to me

8 posts were merged into an existing topic: Welcome emmaob