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AVM Survivors Network

Stage 4 AVM


#1

Hello - Today is October 15th, 2018. This past Wednesday my 22 year old son had a seizure while driving his car. Thankfully, he was not physically hurt and didn’t hurt and didn’t hurt anyone else. He landed in the ER at Kaiser where they did discovered his AVM in the right frontal cortex. There have never been a symptoms/signs until this. Did an angiogram and were unable to perform embolization because the pressure is too high. It’s been 28 hours and we have not been able to speak to surgeon and the lack of communication on what’s going to happen now is overwhelming. Did just find out his surgery is scheduled for this Monday, the 22nd, but I have so many unanswered questions. Like what size is it, how many surgeries has this surgeon performed, what are the risks, etc. They are thinking of sending him home until surgery next week and I’m scared it will rupture. I also want a second opinion and want to know he has the best surgeon possible. Please, please any information you can share with me going forward is much appreciated. I’m so scared, but not showing my son. I’m making our concerns known, but this is Kaiser and I don’t feel like anyone is listening! -Sharon


#2

Contact Dr Lawton at Barrow in Phoenix AZ
He’s considered the best!


#3

I have grade 4 avm in left frontal lobe. It’s been 2years I have found out… Now I found that it’s untreatable… No gamma knife , surgery or ambolization. I am having seizures too… But neaurosergen said if you want to do anything of it it will do more damage than good… Life threatening and its near the motar cortex which controls the body can make me paralize and too deep … my option is to wait if it’s changes like bleeds or having stroke… Please do second opinion… As life would never be same after surgery… Hope for best


#4

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