24th February 2021 was the year my life changed forever. I was at the gym as I am regularly when I had a severe headache. I was 18 at the time and somehow managed to drive back home even with the pain. Since my mom is a doctor I wanted to get her opinion regarding the matter before going to the hospital. After this I passed out. I don’t remember any of this at all but this was what I was told after regaining consciousness. Since then it’s been a tough journey. I’m sure everyone here has their own story and I just want to say the posts here really help me push myself and work harder to get better. So I want to thank everyone for sharing their stories. It’s been almost 2 years since the injury and I wanted to know how many ppl here continue to recover few years after the rupture. We might not know each other but this website really helped me through some dark times. Thank-you guys
Welcome to our site and thanks for positing! The folks on this site are really a fantastic group, and the stories of courage, perseverance, patience and caring. When I had my bleed back in 2016, I like to say I had some of that 10 feet tall and bullet proof attitude. I realized that I do no need support from others, and the folks here provided that from people who shared a lot of similarities to me. We are certainly all different but we all also share so many similarities.
I can say that, yes, many continue to recover after two years. I was one. The most rapid recovery for me occurred in the months following, the pace of continued recovery slowed but forward is forward! I did not have any major setbacks or additional complicating factors during my recovery. I was bleed, hospital, home and recovery for 6 months, gamma knife and few side effects following. I would be a relatively straight forward case when talking our “world”. Take Care, John.
Hi there. I haven’t had a AVM rupture but I did have a stroke mimic in 2016. At the time I was using a cross trainer and pushing myself quite hard. I was trying to lose some weight too so was also restricting my food intake. I don’t know the cause for definite, but for one reason or a combination I had an ‘episode’ which affected my eyesight and perception. I didn’t realise for a couple of days but actually the entire left side of my body was affected. I had the droopy mouth, couldn’t walk etc. At the hospital they did a load of tests but could find no evidence of an actual stroke. That’s when they told me I’d had a mimic brought on by ‘stress on the body’. It took me about 9 months with regular physio to get all my movement back.
Hi @Zadeed I’m glad to hear you’re doing better & like you find this place has also helped me through some dark times.
It’s amazing how much stress release & comfort you can get on this site from interacting with other survivors… cause that’s what we are here!
I’ve read several stories of these issues occurring at the gym or after intense training etc as I also first found out about my AVM after a headache after weightlifting… I had a bleed 1 month later & had surgery for removal at the time as there was no other option.
I think it shows there’s definitely a risk factor there we all need to be aware of & keep in mind when training or exercising… please keep us posted on your journey… God bless!
Hey @Zadeed, I’m glad you found us. I also had a stroke when I was 18, though I was just lounging on a couch. I had a craniotomy about a month later. As was said earlier, the largest progress was probably in the following six months or so, though still slower progress now. Everyone’s brain is different, everyone’s AVM is different. It’s hard but it’s great you’re here now.
Welcome to AVM survivors! (I know you’ve been a member for a while but it is good to have you speak up and for us to understand what you’ve been dealing with).
There are definitely people here who are still working hard on their recovery several years after their bleed. Two years may not be the end of your recovery.
I’ve not had a bleed myself but we did have a documentary on television here some years ago and, while the subject of the documentary did not have an AVM as the underlying cause of his haemorrhage, I think the film serves as a very useful example of how long recovery can be and how good a recovery someone has made after a severe stroke. I think it is very helpful material: My Amazing Brain
Very best wishes,
Thanks for sharing your story. I am 2 years and 1 month past my AVM rupture in my brain stem. And, YES, I am still recovering. Sometimes I think I should be further along, but in reality, it is a miracle that I am able to do the activities that I can! It is a long road and I think everyone’s recovery is different. I hope to continue getting stronger and being able to do more as time goes on. I wish you well as you continue to recover…
I was similar age when I had my bleed. Like you I was super fit and at 19 suddenly crumpled.
I didn’t walk for months but I got there and so improvements can happen quickly and some take a little longer. Try to be kind to yourself and not expect too many milestones. Push harder when you can and rest on the other days.
Essentially I’ve been left with a hole in my brain and so if I’m alive at 60 I’ll be surprised. I know my body won’t last forever but even aged 50 I managed to hike at 10000 feet!
I had some noticeable changes in the first 6 months but at the two-year mark a couple very small changes that only I would notice such as little bit more feeling in my left hand little better balance and coordination but very minimal after 2 years; doesn’t mean you quit trying though or hoping!