AngryBear

Hi I’m Amey, I’m 23 and have an AVM at the back of my brain.
To say this has been a tough year is an understatement, on feb 9th I had a bleed on the brain that caused me to loose all my left side movement, lack of balance and coordination as well as double vision in my left eye. At first medical staff tried to put it down to cluster headaches but after many scams they found my AVM. I’ve had two batches of gamma knife to try and shrink it but won’t find out if it has worked for another two years. Whilst waiting I can still have bleeds on the brain, I’m on five right now… they’ve put me on medication to help with the pain but it’s all a waiting game. Whilst waiting I’ve had physio and gained back most of my strength and use of left leg. I’ve found that I’ve had to deal with this alone, no help or support from medical staff on how to live with something so dangerous and life changing. This is something I want to change!

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Hi Amey and welcome to the site. I have a left temporal AVM and have had one dose of gamma knife back in November of 2016, about 6 months after my bleed. You’ve had a tough go for sure and I understand the waiting, I was fortunate and didn’t have anymore bleeding. 'm sure you’ll find this group really helpful, we’re all different of course but certainly have a lot in common and understand where most don’t. When I first went to emerg this initial diagnosis from the Dr. was stress headache, then after a CT things changed quickly. IV, stretcher, ambulance to another hospital that does the brain side of things and then admitted etc…certainly was not a stress headache and thank goodness I had the CT or likely would have hit the floor and been in much worse condition. Its great you’re here and I know you will connect with a lot of folks. Take Care, John

Hi Amey. I too would love to raise awareness of this condition. But I have never been sure how. It doesn’t even cross most people’s radar unless if affects them or someone close to them. My AVM showed itself in 1987 when I was 14. But I was advised to ‘leave alone, don’t touch it’. So as a consequence it has never been treated. Fortunately I don’t really suffer with any day to day deficits and have never had a bleed. It is really frustrating that there is such a lack of knowledge and advice. Though I have to say that in 1987 there was nothing and I thought I was the only one with AVM! Cheers Lulu

Hi lulu

Im actually hoping to go to my local MP and further with my story and other peoples stories to hopefully get them to help. I will hopefully get help to start some form of charity. Thanks Amey

Good for you. That sounds great. Lulu x

As a general call to raise awareness in the USA… bensfriends.org get funding via grants and often part of grants is showing how much awareness you’re generating.

Right now bensfriends.org is working on raising awareness in general of bensfriends.org and of specific rare issues as possible via the attempt to place human interest stories with regional media outlets.

I’m both a moderator-at-large and helping find interesting regional stories and people willing to share them.

If you live in the USA and and are interested in raising awareness of this condition and related issue please send a private message to the moderators and I’ll get in touch with you directly.

azurelle