Cerebral AVM

[Steve]

Hi my names Tracy, im 23 years old. When I was 3yrs old my mum noticed that when I was walking I would frequently sit down and when tried to be picked up I couldn't stand, then on one occasion my parents noticed I wasn't using my left limbs and they were 'floppy' after a couple of hours I'd stand up and start walking and playing again. My parents sorted advice from my G.P and He thought I was having febrile convulsions until one day when I was at the doctors I got one of my weaknesses.

I was referred to a neurosurgeon and had my first CT Scan and was diagnosed with a Cerebal AVM, I was now 5yrs old. I was admitted to the Royal Hallamshire Hospital where I had stereo tactic radiation (with little affect). I've been told my AVM is inoperable due to been in the center of my brain.

In February 2002 at the age of 19 I had my first haemorrage, it felt like my head had been put in a vice and someone was tightening it whilst been hit over the head with a sledgehammer I just could not believe the pain I was going through, I knew straight away it was a bleed. In that same year I had a further 2 haemorrages.

Neurosurgeons decided to try embollisation, this is where they mask the end of the feeders coming off the AVM with a type of glue. It was too dangerous, in many cases of AVM's they have 3,4,maybe 5 feeders coming off it, they estimated mine as having thousands! Due to my AVM at the age of 12 I developed epilepsy which is ongoing but well controlled by anticonvulsants, I'm also a registered disabled, I can walk but with some difficulty. At the moment I seem to be doing well health wise but get so worried at the smallest headache thinking its happening again. I have yearly check ups but I've been told I'll never be cured so I live my life to the best of my ability and I'm enjoying myself!

Good luck to everyone out there, I wish you the best.