Hi Jonathan,
Thankyou for sharing your story with us. Finding out that treatment is higher risk than leaving it alone is a hard pill to swollow. I found out the same thing last year and it was a big hit but like you, given the facts, I knew leaving it alone and monitored was the only rational choice.
My AVM is 4cm so not as big as yours but it is an awkward shape, “diffuse” so not possible to pin point easily for gamma knife. They told me I would likely suffer necrosis / damage to the local brain tissue and swelling if GK was attempted. Embolisation is not possible due to too many feeders. They told me like you, craniotomy is the only option currently.
For craniotomy, I would have the remaining of my left occipital lobe that works, removed - causing complete loss of right hand side visual field in both eyes. Even if I were willing to sacrifice this vision, chances of damage to language, cognitive function and right side movement or fatality is too high to consider. Only to be done in a emergency situation.
I got the news about no treatment December 2018. It does get better! I rarely think about it and just go on with life now.
In terms of education - throughout my degree, I had gradual brain damage and unmedicated partial seizures and because I had no diagnosis I had no accomodations or understanding from peers or lecturers. This gradual brain damage was because I had a 1 in a million case, very very aggressive AVM. With determination and support from loved ones - I suceeded in getting a 2.1 degree from a top 10 university in Chemical Engineering! I did have to drop out of my masters but if I had been diagnosed sooner, I’d have had help before it reached the point of my health being so bad. Not having a masters hasn’t affected my prospects at all. Your education prospects are definently not doomed and you will have the support and understanding I didn’t have - so even a better chance since you’re diagnosed at a younger age!
In terms of life and job prospects - I finally got diagnosed after university. My condition was so bad that I had a urgent embolisation. It didn’t successfully treat my AVM but the glue did stabilize it. Unfortunately during the operation, I had a bleed which led to a stroke. This has resulted in partial sightedness, memory, energy, orientation issues and processing delay. Now, 1 and a half years later: I live independently in a lovely flat, starting a new job as a software development consultant (I didn’t hide anything and they were happy to make accomodations for me), have an understanding partner, well adapted to my “new normal”, much better mental health and happiest I’ve been in years! I have chosen a differant path then my original plan, going into software development because once trained, it gives me the freedom for mobile working allowing me more breaks and rest. But doesn’t make it any less interesting. So… if you were to have a bleed, with rehab and recovery, you can still have a happy life!
If, a new and much safer treatment option becomes available then that would be great, I’d definently consider it. If circumstances changed and a craniotomy was urgently needed, then we’ll cross that path if it comes to it. If not - plenty of people live long lives, stroke free, never having known they had an AVM! I’m not scared anymore because whatever happens, I know I’ll rehabilitate and move forward
Hope this helps!
Corrine