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AVM Survivors Network

New to site-have had a cerebellum bleed

#1

Hi, I have recently had my 2nd bleed in my cerebellum. I was in ICU for 2weeks. It’s just off the brain stem. I had gamma knife treatment in 2015. It seems it was not all caught which is why I have experienced a 2nd bleed. This time worse… has anyone else had this happen? I am currently relearning to walk, I am nearly on crutches now :smile: It happened in June '17 so not that long ago. Though I feel I’m on a speedy recovery. I do hope so xx

#2

Welcome to the site! I have an AVM in my left temporal, had a bleed in May 2016, and gamma knife in November 2016. So I can’t add in respect to a second bleed, its possible someone here will add who has had a similar experience. A lot of experiences here but I’m not sure I’ve seen one similar to yours. You’re certainly right in respect to time being so important during the recovery process, that’s certainly something I learned and patience was not really a strong suit of mine. It’s greta you’re her with us, take care! John.

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#3

Hi there. I also have an AVM of the Cerebellum but mine is unruptured. I am really really hoping (perhaps naively) that it will never bleed. One thing I do know is that the Cerebellum is responsible for physical movement and balance so I’m not surprised you are having to relearn to walk. In Feb 2016 I had a funny turn (docs referred to it as a Stroke Mimic) which gave me the symptoms of a Stroke - left side weakness (my AVM is the right side of my brain), no balance, inability to walk etc). I had loads of physio and thankfully am as back to ‘normal’ as I can probably hope for. I really wish you all the best of luck with your recovery and pursuit of being AVM-free (if that is what you wish for).

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#4

Thank you John for your reply…

#5

As long as I accomplish the walking I will be one happy lady… it’s no fun relying so much on others. It’s all taken for granted when we have the ability. I’m also struggling with my sight, it really sucks… I wish you all the best and I hope it never bleeds l😃

#6

Thanks a lot and all the best to you too. Hope your problems get resolved. I know what you mean about having to rely on others. I hate having to do this too.

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#7

Hi and welcome to the group. I also had an AVM bleed in my cerebellum in 2014. Had Gamma Knife in early 2015. All subsequent test showed no sign of the AVM. Last month, 8/17, I had what I had hoped was my final Angiogram w/contrast dye. Turns out, its not gone, but it is 50% smaller. After reading your post I will ask my doctor on Thursday, about the probability of a second bleed. Best wishes to you for a full recovery.

Sharon D…

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