Hey everyone, I’m Keith and wanted to say “hi”. I feel bad posting my story because mine is short and there are so many people here going through long and tough journeys but maybe my story can give hope to someone.
My AVM was diagnosed in November after having a seizure. At least that’s what everyone thinks happened, no one witnessed it. I was visiting friends in Barcelona and on the morning I was to go home for Thanksgiving I woke up in massive pain with a posterior shoulder dislocation. After returning home to CA and reading and thinking more and looking at the bite marks on my tongue, I self diagnosed my seizure and went to my doc. From there it went from CT scan to MRI to the first neurologist and then was referred to Dr Steinberg at Stanford in about three days. I am very lucky to be in the backyard of some great treatment options, I live about 20 mins away.
Mine was small at 1cm but high blood flow in the temporal lobe but in a “safe” spot. They recommended 1, maybe 2 embolizations and then the craniotomy to remove it. The doctors mentioned there were some people and papers that stated it could be left but recommended removing it. Had 2 embolizations the first two weeks of December and then the crani on the 3rd week. Recovery went fairly well but was painful and scary at times, only very small side affects at this point. I’ve been able to return to some of my favorite hobbies including snowboarding and playing ice hockey. I know I am very lucky and try to appreciate it daily.
Fortune Mag was doing a piece on virtual reality and my doctor’s use of it as a both a teaching and surgery tool. My doc volunteered me to be a part of the accompanying video, figured some might be interested to see technology mixed with AVMs.
The seizure part fascinates me.
I think I had been having “absentee” seizures for up to a decade and they had increased in intensity and frequency. Some really weird stuff and it fascinates me and I want to learn more about it here and hear about other peoples experiences. I had been starting to discuss it more with people but I ranged from thinking it was something like runners high, to psychedelic flashbacks, to self-taught and unintentional transcendental meditation. It all sounds stupid when I see it written. Ironically, I told the friends I was staying with in Barcelona about it days before what I think was my first and only tonic clonic seizure. If there are any threads or topics discussing it here, pointers are welcome, I haven’t yet found any.