I had a cerebellar hemorrhage on August 7, 2023. Completely out of the blue, yet extremely humbling and life-changing! Looking to connect with others who had a similar experience.
Thank you!
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Welcome to our group! Iām similar to you, in 2016 I had suddenly discovered I had an AVM and what and AVM was, and a journey began! John
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Thank you, John! To have my life upended has been a lot to digest. I am expecting that, with time, things will be more manageable.
Take care,
Kristin
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Hello @Kpsy2008 , itās nice to meet you. I joined this group a few weeks ago. I had a cerebellar AVM hemorrhage in March 2022, and it took me almost 2 months to even properly understand what had happened! And you donāt want to lose the rhythm of your normal life, but you canāt avoid a major disruption.
I remember silently freaking out when, after 2 weeks in the hospital, my neurosurgeon told me I would need to take 1 month off work to recover. Itās funny to think about now, since I had to take several months off work, and Iām still recovering, over 3 years later. 
Anyway, Iām sure plenty of people can commiserate with you here!
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Welcome to the family & wishing you all the best in healthā¦ God bless!
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Welcome!
My brain stem hemorrhage occurred 11/30/2020. Definitely life changing! I marvel that the brain is so adaptable. i continue to recover this many years later. It is slow, so i have learned to be patient and know my limitations. for example, now i HAVE to nap every day 
Lots has changed. I try to focus on what I can do. It is healthier for me than the alternative.
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Hello!
I also had a haemorrhage in September 2023ā¦
I had cyber knife treatment 3 months later.
Recovery was a little difficult for me especially the psychological part.But at this moment Iām doing very good and feeling like my old self again!
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Me too! My cerebellum haemorrhage was in dec 21. My life changed overnight. They were able to operate to remove my avm but over 3 years later I am still dealing with the consequences. I was not able to return to work but have been able to drive for the last 6 months which gave me some independence back. I have learned to accept what I canāt do and be grateful for what I can - recovery continues! Never give up, although I certainly felt like it at times.
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@Kpsy2008
Hello Kristin
Way back in 1990 my avm ruptured and I couldnāt walk or talk.
Itās a crap journey but I am still here and living independently which is most important.
Can you get the support you need?
Tim
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Hey there, I had a hemorrhage in December 2024 and brain surgery in June just recently, currently just recovering, but certainly seeing the improvement. The physical recovery will be temporary, but Iāve certainly noticed an uptick in my mood and mental health generally now that I had surgery. The time in between stroke and diagnosis was the hardest because I felt all alone. I only started reaching out to groups like this post my surgery. I think I was too scared to in advance, but here for you and here to talk if you need. Matt
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Thanks to everyone for the helpful responses! It does seem that others āget it.ā Itās a group of which we would never want to be a part, but glad that you are in it with me!
Iāve found that itās trial & error; what is best for support and progress. Very eye-opening, for sure!
Iām just taking things one day at a time & seeing where that brings me. Thanks for all your support!
Best,
Kristin 
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Hi all. So interesting to hear everyoneās stories.
Never heard of AVMs last year, now Iām slowly becoming a mini expert!
Iām West Midlands based in the UK. Iām a fairly fit (was anyway) 44 year old man. I went to bed Dec 2024 one night and woke up with what turned out to be a brain haemorrhage. Had 4 months off work recovering and learning to walk again.
First angiogram in hospital was inconclusive but repeat angiogram in June 2025 confirmed AVM, so Iām still in a spin really.
Told my only real option is GammaKnife with the International Centre in Sheffield but likely 6 months before I can get my first session.
Feeling like Iām on a big roulette wheel until such time they can hopefully āobliterateā this malformation.
Great to have such a community available to read tales of hope.
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Welcome @PatrickB
Iām not very far away ā in Leicestershire ā and have had a different path from you but we have a load of people here who have gone through gamma knife or are going through gamma knife. Thereās a very useful story in our AVM101 category.
Sheffield is the major centre in the UK for radiotherapy in this way, so the vast majority of UK radiotherapy patients have been under the care of Sheffield.
Feel free to ask anything you want. I would encourage you to read around the site. Avoid restarting old conversations but anything thatās current, feel free to ask your questions in (or we can move your post to a new topic).
Welcome!
Richard
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Thanks Richard, really appreciate the response!
Iāll have a read around and maybe add a new post or 2.
Regards
Patrick
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