I found this community online, and I’m so grateful I did. For a long time, I’ve been searching for a group of people who walked a similar path. Only recently did I discover that the reason I couldn’t find such a community is because what I went through is so rare — just like many of you here.
When I was 8 years old, I survived a brain AVM rupture that caused a hemorrhagic stroke (intracerebral/parenchymal bleed, with obstructive hydrocephalus). I spent months in rehabilitation afterwards, and later struggled with depression and PTSD. And deep down, I hated to have survived, I felt so alone and so different waking up at the hospital.
Over the years, I’ve met others with brain injuries, but I never really “clicked” because our stories were always very different. That’s why I wonder if there’s anyone here who also survived a pediatric AVM rupture and stroke, and truly knows what that journey feels like.
As I was reading posts on this site, I came across one from a lady who was pregnant and was advised by her doctors to have a C-section, because the stress of labor could be too much for her brain. Honestly, I felt so happy to read that because I went through the same, and for the first time I felt understood and connected.
I really hope to find survivors, friends, or anyone here I can truly connect with.
Welcome, and thanks for sharing. We have an incredible community here, we are so different but share so much! Its great you are here with us. Take Care, John.
How awful that you had to spend a whole year in the hospital. I was in the hospital for about three months, including three weeks in a coma. Thankfully, I was able to walk almost immediately after I woke up. Sitting for the first time felt like back pain, but I’m so grateful to be walking again.
The thing about being so young is that you don’t have anything to compare it to. For example, when someone asks me about my fatigue, I don’t have a reference point. I don’t know who I would have been without a brain injury. You know what I mean? I don’t know if my fatigue is normal or due to the brain injury.
Funny that you ask about hereditary AVM, because I just recently discovered that it can also be hereditary as well. And yes, I’m going to do genetic testing for that, since I have 6 aunts/uncles who died with unknown causes.
How about you @Timb? is yours hereditary and I assume you had a brain injury as well?
Glad you found this place. I am also a childhood survivor of an AVM burst. I was only 7 years old and little was understood back in 1963. Much of my childhood was changed due to a slow recovery. I marvel at the progress medicine has accomplished. So much of it reads like science fiction to me. At 69 now I look back and feel so grateful to the pioneering doctors and surgeons who saved my life. Miracles do continue and survival is so much better today.
Wow, what a story. It’s amazing that you survived that back in 1963. I had my accident in 2003, 40 years later, and I’m thankful for a quick recovery. You can definitely say that healthcare has advanced and still does. Only the future of robots operating on humans sounds a little scary to me.
Nice to meet you, and I’m glad you found this community. I was ten years old when I survived my first brain bleed from an AVM in my prefrontal cortex. I spent 11 days in a coma, was paralyzed on my left side but was able to walk again shortly after I woke from the coma, and I have/had severe short-term memory loss. I suffered a second bleed (into a ventricle instead of in the brain) at age 24, and I am currently recovering from my third Gamma Knife treatment. I too have depression and PTSD from the ordeal, not helped by the fact that I’m still facing this 19 years later. I also struggle with the “new me,” and I often feel like this isn’t the person I’m supposed to be.
I’m actually getting married in nine days, but even though I’m thrilled to be with my true love, I’ll always know that this isn’t the real me. I’m also devastated to be getting married before I’ve been able to confirm obliteration of the AVM. When I got engaged in February of 2024, I delayed my wedding until September 2025 with the hope I would be AVM free by then. Unfortunately my timing was horrible, and now I will have an MRI shortly after the honeymoon.
Anyways, welcome to the discussion! Although all our experiences vary, you have found the right people to really understand and empathize with you! All the best, feel free to reach out any time!
Hi, I have a question and concern that I really hope someone can clarify for me.
I delivered a healthy baby boy 7 years ago, but something has been bothering me ever since, and it makes me sad that no one has been able to explain what it was.
During my pregnancy, doctors first suggested that a C-section might be safer because of the stress on my brain. Later, after further research, they concluded I could go through a normal delivery, so that is what happened. But while giving birth, I suddenly felt a very sharp, stinging pain in my left hip. I always thought it might have been a nerve, but I am not a doctor and I am not sure.
What confuses me is that after my accident, I remember (and also have photos showing) that the hospital used to wrap my hip in bandages, but I never understood why. This still troubles me.
I’m also worried about the future. If I were to become pregnant again, could the same pain come back, or even get worse? If it really was a nerve, could it damage my leg or cause paralysis?
Even now, sometimes when I walk or carry things, I feel pain in my hip, and it makes me wonder whether I would even be able to carry another child.
Does anyone have a similar experience and know something about it?
It’s possible some of the @PelvicAndUterine ladies have gone through such things or the @Extremity ladies or any of the brain ladies (but I don’t have a way to tag just the ladies!)
In general, I can’t think of a reason for compressing your hips unless you were to have multiple AVMs and possibly have one in your hips, so your best recourse may be to ask the hospital for a copy of your records. I would expect if it was undertaken in the Netherlands that there will be a protocol for requesting any data held about you at each hospital that you visit. In the UK it would be called a Data Subject Access Request (where each of us is known in UK data privacy law as a “data subject”!) The terms will be different in the Netherlands but the law will be very much the same, driven by the GDPR.
The pelvic and uterine ladies and the extremity ladies do go through concerns about the impact of hormones during pregnancy and the pressures of delivery on their vasculature and the extremity people often wear compression clothing to relieve pain. So such things could be relevant but I would have thought only really if you have an AVM where the compression is being applied.
None of us are doctors, so we can’t say either way but it may be that one of the ladies has gone through a similar preparation.
What a story, so much pain in it. I truly hope everything will turn out well. I didn’t know an AVM could just bleed. I don’t know much about AVMs since I only recently discovered what they are. Actually, I was 27 when I learned that my accident wasn’t random, but was caused by an AVM I was born with. And only recently I found out that AVMs are quite rare; according to my research, only about 0.1% of the world’s population is born with a cerebral AVM.
I know the feeling of the “new me” as well. I struggled with that from the moment I woke up in the hospital, but not anymore. I think the new me is very brave, and so is the new you.
Enjoy your wedding and honeymoon. I believe your soon-to-be husband is also very brave for standing by your side.
Thank you for your thoughts. I do have a copy of my records, but there’s nothing about my left hip in it. Or maybe there is but in medical jargon. I’ll have another look at it.
hi! i was 16 when i had my brain hemorrhage and was treated with radiation. it took me two years to recover from my avm and during these years there was still a risk of another hemorrhage. therefore i was never left alone which made my teenage years very different from my peers. however the joy of surviving was greater than the lack of parties, drinking and teenage romances
My name is Dave. I had a rupture and hemorrhagic stroke at age 37. Quite different because I had a long life prior to my rupture. First I spent seven weeks in the hospital in a coma, then I spent a year in a Skilled Nursing Facility bed-bound and unable to walk. It took me 22 months to learn how to walk again. I’ve been in Physical therapy for two years. Now I’m looking forward to returning to work although I cannot type anymore because my left hand doesn’t work at all
I know the feeling of not having a normal youth. It still hurts to have missed out on that period of life. But you’re right, the joy of surviving is greater. At first, I didn’t actually enjoy surviving. After the accident, I developed depression and PTSD for 19 years. But the joy of living, and feeling like a newborn when I went through therapy, was indeed amazing. We have a story that has made us the strong versions of ourselves we are today.
A dear teacher of mine once told me, “You are never too old to live your youth.” I hope that’s true. But more importantly, I hope I’ll be able to enjoy life truly.
That’s sad to hear. You’re saying you had a life before the rupture, and that’s exactly what I’m missing. I don’t have a reference point.
On the flip side, I’m actually glad that the rupture happened at such a young age, because when you’re younger, your body can adapt more easily to the circumstances. And I think that’s exactly what happened in my case. I was able to walk almost immediately, and talking wasn’t too hard to relearn ( I actually don’t remember, but I think it wasn’t too hard). My left side was also affected, but with therapy I managed to ‘make it work again’. I still have some difficulties, but I believe a young brain can compensate more, and for that I am thankful.
I just don’t know life without brain injury. But I think I’ve reached a point now where I can say: “It’s okay.” But memories still hurt. Nice to hear from you
Yes I went through the same thing twice. The first one was only a brain bleed at 18 and a hemorrhagic stroke. The second one was a rupture with a hemorrhagic stroke and way worse.