My 18yr old son was diagnosed 3.5yrs ago with a 5cm AVM in his left occipital lobe after an MRI was ordered due to frequent migraines. After significant assessment and seeing multiple neurosurgeons on the west coast we selected to have him treated with GK given the surgical risks to his vision. Treatment was done in 2 stages with the first in May 2017 and the second in September of 2017. I know that I have interacted with a number of people on the AVM forum over the last 3yrs and so I have been very hesitant to provide an update on my son’s status.
On March 13th Bryan had a large rupture of his AVM and has been in a coma since then. He was doing great after his treatment and we had just completed the 3yr angiogram to find that although some of the AVM was still present, it was much smaller and likely now had surgical options to remove. While waiting to discuss those options, fate caught up to him and changed his and our lives forever. The AVM was removed 2 weeks ago and we are now in a waiting game to hopefully see him progress out of his coma. The bleed directly damaged his field of vision in both eyes and the compression on the brain from the bleed caused a few small strokes elsewhere in his brain. I have had 4 different neurosurgeons look at his mri and they are stunned there wasn’t more damage from the bleed. We are not sure where our journey will go from here but wanted to update everyone and ask for your prayers.
I don’t regret our decision to proceed with GK treatment vs craniotomy given the size and location of the AVM but I want people to make sure they are very careful after their GK treatments. Don’t let your guard down and make sure any symptoms get checked out early. One positive thing is that after getting over the shock of his initial diagnosis, Bryan’s attitude and outlook on life changed……he lived every day to its fullest and worked hard at everything he did…appreciating everything and opportunity he had. That work ethic and outlook will be needed now more than ever.