Hi there Sal
Happy New year! This truely is a wonderful community, wonderful moral support here and mutual understanding
@DickD: you beat me to linking a copy of your post- a very useful link!
My AVM nidus is 4cm in diameter. Specialists have described mine as on the “larger end of medium” relatively speaking. My AVM was rated as Grade 4 using the Spetzler-Martin grading system by the neurosurgeon who first diagnosed me.
It is a little confusing according to the dimensions given on your MRI report as to why your rated as a “5”. Will you be having a follow up appointment soon with your consultant? I would definently ask them to explain this rating and your MRI report.
For me due to the positioning of my AVM in my left occipital lobe, I was told craniotomy was not an option. So I was offered to take the embolisation route which I am starting later this month.
I see from your posts you say you have been told by your neurosurgeon that your AVM is untreatable by craniotomy. Once/if you have your angiogram, they may find gamma knife or embolisation to be an option for treatment by sending your scans to specialists in this area.
Another thing… my neurosurgeon measured my AVM as being between 4.5-5.5cm when looking at my MRI. When looking at my angiogram scan (higher defininition than MRI) the neuro-radiologist measured it to be 4cm. So you could maybe get a better understanding once/if you have an agiogram in regards to sizing.
If not, as @DickD said, you are not alone, there are many people on here who live happy and long lives with their AVMs untreated. It is worth seeking treatment if a recommended safe option is available ofcourse. But if it is not, and risk of treatment outweights risk of the AVM - you have your AVMer family here always for moral support, your medical staff to help you manage any symptoms and to give you advice. You will keep making the most of life, the sweet moments and your loved ones.
Very best wishes and hugs,