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AVM Survivors Network

Spinning head. Avm views on the Cerebellum

#1

Hi all, this is my second post on here. Had a bleed in June this year in my cerebellum and feel I am making a good recovery. I lost every muscle but am slowly getting stronger, which as you can guess I’m very happy about. I am re learning to walk, my eyes are slowly getting there, I would just like the back of my head to correct itself… it has got better as I was a shaking mess 4 months ago. I can now sit on the edge of bed or sofa with ease. Has anyone else had an avm in this area? Also how long was the recovery process? I know it’s hard to answer as no one is the same. I would just like to hear your stories really… I’m starting to struggle with it a bit now as it seems beyond slow… thank you x

#2

Hi,

I just wanted to pop by and wish you the best. I can’t help you with the symptoms or side effects of an AVM bleed or treatment of a cerebellum AVM but from what I’ve read, recovery takes a very long time from a bleed.

It may not seem fair, but great patience and endurance will get you there… or at least 90-something-percent of the way there. I’m confident we have a wealth of people with experience of fighting back after a bleed who can walk with you as you fight your fight.

Thinking of you. All the best,

Richard

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#3

Hi,
I had the same kind of avm bleed in May. My neurosurgeon and my neurologist have both said that I won’t know the exact outlook for at least 2 years. I was given a neck collar for when I can’t handle the spinning. I was told it’s for my comfort. It definitely helps. Hope you keep improving.

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#4

Hi:

Welcome to this wonderful site for support and encouragement. You are lucky to have found us. My AVM is also in my Cerebellum. It ruptured in Nov, 2014. Prior to that day, I never knew what an AVM was, nor did I know I had one. I had or have all the symptoms you described in your post. I had Gamma Knife Radiation in 2015 and I still have Vertigo, but it is much, much better now. Its not completely gone, but is more manageable when I do the right things. My headaches have also subsided and I can only take Tylenol for pain. In the 3-years since I had my bleed, my AVM is now 50% smaller than first diagnosed! It was 4cm and now its 2cm. I will have a second Gamma Knife procedure in April 2018. The only thing that helps me on my AVM journey is Prayer & Patience and lost of rest. AVM’s refuse to be rushed. You are on its schedule now. Wishing you all the best.

Sharon D…

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