Your Stories

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Have a read through some first-hand accounts of what it’s like to have an AVM.


Bhavesh’s  Story

25/02/2013

I suffered a hemorrhagic stroke March 2012, as I was standing in the shower I was hit full force in the brain, as I stood there. I felt my life drift away to almost zero, and another bang in the brain occurred, like I was dragged back into the real word, i believe this occurred over a period of 15mins.  From that point onwards I went into auto pilot.. got the kids ready and went to work, came home and went to sleep at 6pm, and the next day was pretty much the same, apart from when I got home in the evening I did not sleep till 5am in the morning… something was seriously wrong, I had difficulty in understanding what was being said or the general world around me!! 

the next morning my wife took me to see my GP, whom I spent 20mins with, he noticed my answers were slurred and I was all over the place, so he asked for my wife to come into the room, he then went on to explain that something was direly wrong with me, the fact that I showed up in my shorts and my big long winter coat spoke for itself.  He called for an ambulance to take me to Northwick Park Hospital.


I spent the whole day at the hospital, at some point during the day I couldn’t remember my name, age / who I was. They preformed x-ray’s and MRI scans on me throughout the day to diagnose what has been happening to me, I was passed from the morning ER doctor to the afternoon doctor, who eventually told my wife that I had bleed in the brain, and would have to be transferred  to the National Hospital of Neurology and Neurosurgery, which occurred the  following morning at 1AM


I spent the next 14 days of life in the National Hospital as I do now with partial brain engagement… I had further MRI scans; followed up with Angiogram’s which determined that I had an AVM (arteriovenous malformations) in the brain, which had ruptured and caused an intracerebral haemorrhage.  The decision was made amongst the team of doctors to operate on my brain to remove the AVM, which occurred a week later.  When I need the NHS they saved my life and for that I am so grateful!!


After i returned home, although my wife and my children have been good to me the man I was have undergone some changes in the brain, I sufferer from lapses in memory, attention span, balance, co-ordination, focus, heightened emotions and depression.  All though my whole family are supporting me they do not understand the changes I’ve gone through and continue to go through!!


As I am a father of three children I am looking for some kind of return to normal as I am hoping to continue to be a good father and provider for them rather than loose myself due to my stroke!!  Nearly one year later I may have ups and downs, but I have chosen to adopt a more positive view of life…. Making sure I saviour every bit of my experiences for good or for ill.  I have also wanted to see as much of the world as possible and will try and combine this with raising money for charity aiming to give back to those who saved me.


Best Regards,

Bhavesh Patel



I have an AVM! – Nikki’s Story

There  is a light at the end of the tunnel! Together we can make it brighter.

Nikki Christou, raised well over £30,000 in 5 months  with the help of her friends for The Butterfly AVM Charity for vital research into AVMs, and she says this is just the beginning!!

If you would like to share your experience of living with an AVM, whether it’s yourself or a close friend or family member, we would love to hear from you. Email us at – george@butterflyavmcharity.org.uk

Despite the uncertainty of living with an AVM many have managed to be positive and keep going. We want to celebrate with them and their inspirational lives by telling  stories of their achievements.