Hello everyone,
I must’ve joined this site in 2021. So basically the short version of everything is: I got diagnosed with a large vein of Galen brain AVM late 2020 right before my 21rst birthday and was immediately taken out of work. I did 2 rounds of gk in 2021. I had a brain bleed Labor Day 2022. When I was in the hospital I had a pulmonary embolism and when they were removing the clot from my lung, the clots made me have another bleed and stroke. I was in the hospital for a month, because I begged my mom to take me home because they were gonna keep me in there for my birthday. I came home and my memory of 2021 and 2022 are gone, and my grandma was dying but I didn’t know until she was very close to the end. I used to cry and beg doctors to help me with my memory because my memory would be lost instantly. I couldn’t remember what I did in the morning once it became noon. But I can’t stand for more than 2 minutes unless I’m walking but even still I have to keep the distances short because I’ll start to have an episode like I used to in 2020 before I got diagnosed( vision changes, heart beating out of chest, weakness, and faint feeling) has anyone experienced anything similar or have the same AVM, anything?
Hi I my avm ruptured causing a hemmorsgoc stroke, a a few weeks after my 24th birthday. I lost functionon my left side. I tend to get tired very easily my energy level is extremely low. Standing for a minute straight was a big deal but now that’s improved significantly., But there always hope. You’ll get better slowly but surely. I wrote a book about my story and the strategies I used to cope with the tough times I had to endure mentally and physically. I wrote this book hoping that it would be a source of help and motivation for others in similar situations as me. Here’s the link to the book.
https://www.amazon.com/gp/aw/d/0228827450
I hope it helps good luck!
Hi Kricha, I had an AVM, 2 craniotomies and seizures ever since. One of the hardest parts for me has been loss of memory… I’ve had “strangers” coming up to me and talking as though they 're friends. I wish I had some advice. Maybe journal. Best wishes, Greg
Hi I’ve had had my share of difficulties with mememory loss in so many ways. The difficulties have so many barriers.i can be thinking of something and only a moment before that thought is lost. So please take heart and treasure those
Memories and thoughts you have.
LESR
I had a bleed and then surgery in 2011 and can honestly say my memory has never been the same… I’m sorry to hear about your story but just know you are not alone and we are here for you… God bless!