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AVM Survivors Network

Month 7-cerebellum bleed


#1

Hi all, Just seeing if anyone ever still had issues 7 months in? I know it’s early days and every case is different but I’m still struggling with my head… I had a rebleed in June 2017 in my cerebellum and it has still not stabilised. It has got much better but it’s not gone away. It’s like my brain is constantly moving/ vibrating /shaking/juddering not sure how to explain the sensation. Has anyone else experienced this and I’m guessing it does go away as I have never read that anyone has this… I also have funky vision, poor balance and having to re learn to walk. Which is all improving slowly but boy am I having to put in the hours! It’s hard and slow but I’m thankful that it’s all moving in the right direction.

Thank you for taking the time to read my post.


#2

I’ve still got a bit of a pulse going on on the back of my head somewhere, I think. Can’t feel it on the outside but it feels like your constant moving feeling, I think.

I’m going to get it checked out but I’m having to wait to March.

I’ve not had a bleed so I’m sure I’m much better off than you, but I hope it helps not to be completely alone!

I think you had gamma knife, so I think it takes ages for that to have its full effect. I hope you just need time to get better.

Very best wishes

Richard


#3

I think it can take up to five years for gamma to take full effect. I’m hoping for a change soon from the bleed as it’s been 7 months since the re bleed. I’m sure it will happen. It’s just a long slow journey in the meantime… All the best for your appointment, I hope they have some advice for your sensation, fingers crossd :blush: good luck.


#4

I’m sure it will happen, too. Gamma is an amazing process but also amazingly slow, so it is quite a test meanwhile.

Very best of luck,

Richard