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AVM Survivors Network

New here, one of the lucky ones (knock on wood)

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.

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Welcome Keith, and thanks for sharing that. It is awesome, I enjoyed it immensely. Great to hear of your positive outcome! Never feel bad about telling us a positive outcome, everyone here will be happy for you. I personally love hearing of success! Great to hear about your hockey playing! My son is winding up a hockey camp today and I still lace 'em up for a couple fun tourneys a year. Again welcome and Thanks! Take Care, John

Keith,

Welcome to the site! Never feel the need to apologise for your story seeming “less” than others’. We all worry about what we’ve got and the options for treatment, so in some ways I think we all go through the same mill.

Very best wishes

Richard

Keith,

This is a great share!

VR prep for surgery looks great! To see something in 3D rather than it have to be only 2D must be a fantastic tool for a neurosurgeon! And you got to look into your own brain!! That’s a bit of a rare thing, too!

I wont tell you the level of imagery or information sharing I got pre or post surgery! I’m quite jealous!

Great share. Thanks,

Richard

@holleman Hello Glad you made it back home !
I am also a Stanford patient but I see Dr Michael Marks.
I also was having seizures I would say I don’t feel good I am going home at work and next thing I know 2 hrs has gone by…
I first had a rare stroke due to 5 blood clots in my brain and went into a coma and had a massive stroke.
Then about six months later they found my AVM .
I see the head of stroke at Stanford at first he said I could not have 2 rare brain things but now they know that DAVF are common with CVST.
I still have mine they can’t do anything more without possibly causing paralysis so we are just watching it.
I have always wanted to ice skate and play hockey but it really makes my family nervous.
Dr. Steinberg is heading the clinical trials for stems in the brain for stroke and TBI for paralysis. Hopefully it gets fast tracked by the FDA.
Angela