Hi there,
I am a new member from the UK. Back in November 2023, I was told of an incidental finding of a right superior parasagittal AVM. Had an angiogram in Feb 2024, and consulted with my neurosurgeon in May. Neurosurgeon said there is a 3-5% per year risk of AVM bleed. Given I’m only 57, the likelihood is therefore high that the AVM will bleed before I die (assuming I live another 20-30 years). Given the eloquent position location of the AVM, he recommends GK. I then spoke with the GK neurosurgeon, who explained the risks of GK to me: swelling, epilepsy and the one I’m most scared of: 3-5% risk of sensory and motor deficit and weakness on the left side of my body.
I am so scared that I am really struggling with the various risk percentages. Especially the 3-5% risk of sensory/motor deficit and weaness on the left side of my body. Has anyone been told of this risk? What does that deficit / weakness look like? Will I still be able to live independently. He characterised the 3-5% risk as very low risk, but somehow in my head, it is huge.
I really at this point don’t know how to think about whether to go for the GK. Friends keep saying if I’ve lived with it for 57 years, surely it wouldn’t bleed. I don’t know. How many doctors did you talk to before deciding on a way forward?
Sorry if I’m rambling a bit, but I am so terrified at the moment.
Thank you for any advice,