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We want to hear from you: please tell us about your experience of the online community.

Brain AVM

arrywillz

Hi everyone New here but I needed to know if someone’s been through a similar thing as I’m really struggling, at the age of 21 I was diagnosed with an avm back in 2013 and had radio surgery (gamma knife) in 2014 to treat it, unfortunately I suffered quite a lot of trouble post surgery I then developed epilepsy and started to suffer from severe aura migraines and headaches witch both still effect me to this very day 7 years later and have impacted my life, work and mental health greatly just wondering if anyone else suffered anything similar and did it get better? As I just feel it’s never going to end thanks.

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Comments

steve51

Hi @arrywillz

Good Morning!!!!!

I am one of the Community Champion’s here at Scope.

Yes I have also had a Brain AVM.

Mine was at the base of my “Brain” at the top of my “Spinal Cord”

I have also had :SRS Radio Surgery here in Birmingham.

This didn’t work & it has given me “Chronic Pain 24/7”

Please come back if you need any further help?????

@steve51

chiarieds

Hi @arrywillz - & welcome to the community. Great that you've met Steve, as you will have much in common, tho very sorry you've both had complications. Hope to see you around the forum.

Chloe_Alumni

A warm welcome to the community @arrywillz! I'm really sorry to hear about your post-operation complications. Do you currently get any support at work?

Please do have a look around, get involved and please shout if we can do anything to help.

janer1967

Hi and welcome to the community glad you have joined us here. I am sure there will be lots of members who can share their experience with you and I look forward to seeing you around

angel123x

Hi there! I’d really appreciate it if you would share or donate to this GoFundMe, Brain Avm rupture - Stroke at 21 - He deserves your love and support (Removed, crowdfunding is not allowed on the community)