I was a member of this site many moons ago and found the information and support really useful. So now, after a new round of symptoms I’m back again to hopefully get some support and help others where I can.
My story to date:
I had a cerebral left-side fronto-parietal AVM diagnosed around 1994. No bleed at that point but it was of a size that needed treatment and as it was inaccessible for surgery then GKS was deemed to be the best option.
I had SRS in 1996 at the Royal Hallamshire hospital in Sheffield, UK. This wasn’t sufficient to treat the whole AVM so I underwent a 2nd SRS in 2001 - I was eventually told my AVM had been thrombo-obliterated.
Unfortunately, the treatment left me with a right side hemiparesis.
In 2007 I started having symptoms of numbness in my right arm. After various tests this turned out to be a large cyst on the AVM post-radiation site.
In 2010 I underwent a Craniotomy again in Sheffield to marspualise the cyst. The op went well and recovery was good but the benefits gained from the marsupialisation didn’t last. However, although I was disabled and still had focal seizures, everything was pretty stable and I just got on with my life, grateful that I had a good life with a great family.
Fast forward to the end of 2019 - my seizures are now not controlled, they’ve started to become generalised not focal. And - I’ve lost total use of my right hand and arm. Guess which one was my dominant hand??
I had an MRI on 1st Feb which has shown that I’ve had a largeish sized bleed. They’re not sure where from as my brain has a mass of scar tissue/post radiation necrosis.
I’m booked in for angiography next week and then the radiologist and neurosurgeon will review it and then we’ll decide on a plan of action.
So here I am - back again, facing uncertainty and trying to be optimistic!
Looking forward to catching up with you all.