My Cerebral arteriovenous malformation

This is a repost from my blog at

This is a serious subject, but one I think about all the time. I have Cerebral arteriovenous malformation (AVM) it is defined as a malformed collection of blood vessels within the brain, characterized by tangle(s) of veins and arteries. Why is this a bad thing you may ask? Well, over time the integrity of my blood vessels in my brain decreases. This can cause sort of like bubbles in the week spots. These can burst causing aneurysms. This can very easily kill me, or severely damage my brain. I know it is scary but it was a realization that I had to find out at thirteen years old, that is when they discovered my AVM.

You see I have epilepsy, I had my first seizure when I was 7 years old on a trip to my grandparents in Louisiana. I had a seizure and went face down right into my pizza. They originally thought that I had meningitis. However they never found any evidence of that. I remember having the worst headache of my life while driving to my family’s house. Next thing we stopped at pizza hut in Montgomery and I remember watching mtv on a big screen. Next thing I knew it felt like some one was grabbing my head and shoving it towards the floor. It is a very weird feeling. I woke up with every one crying and looking very worried. It is interesting. It sounds like you are listening through a sea shell when you wake up. Hearing is slowly regained. You wake up not knowing where you are and scared. It is a very helpless feeling. I spent the next 4 days in the hospital undergoing tests and I got to use one of the first MRI’s…. It was new technology then. Two years ago after discussing all my symptoms and what they found of my first seizure and hospitalization when I was 7 we have come to find out this was my first and I hope only bleed. Luckily I survived. Well I think I have had a total of 7 grand mall seizures I think they call them something else now days. I have more not as sever seizures in my life. This can include loss of time, to just seeing stars.. Well MRI’s slowly got better and better over the years. When I was 13 they saw white spots on my results. At first they thought it was tumors.. Ya 13 years old and you might have brain tomors. Kind of scary… Well they sent me to Gwinnet medical center to get an angio gram. They then discovered that I have a AVM. The interesting thing is, now this is not 100% proven, but when I was a child I was slow development wise. Then all through school I had sever learning disabilities. This includes dyslexia, dysgraphia, and ADD or some people call it ADHD… I was a very hyper child. So I struggled all the way through school. People told me I would never graduate high school. Now I am a college graduate and I do unix support with EMC corp. Well school was the hardest thing I have ever done, but with the support of family and friends I was able to succeed. So I think this covers most of the history behind my disorder. I might have missed something. However everything most likely revolves around my avm.

What made me think to write this post is I get head aches all of the time and the scare me. Headaches for normal people are just a nuisance. However for me if I get headaches in the left back of my head that scares the crap out of me. This morning I was on my way to work and I felt a couple pulses of sharp pain from that area. The problem is I don’t know when it is severe enough to go to the hospital. I am not a big judge of that. I don’t like the doctor and I never have. So its constantly a worry of mine and Katrina’s. I love my wife and I hope I never have a issue that she would have to go through with me.

I also worry about treatment. You see it is a rare disorder AVM-afflicted people in the United States range from 0.1% to 0.001%, and there is only one place in Atlanta that can treat me. The scary thing is to try and relay that information to the hospital when I get there. I may be completely out of commission. Emory hospital is the only place that can treat me. Ok now for the gross part they will have to drill a hole in my head to release pressure. Then they will need to life flight me to Emory and do angio procedure to send a catheter into my brain to cauterize or block the leak. I am afraid that some dr at the local hospital will not know this and try to do brain surgery on me. This will probably kill me because you can not get to it that way. So if any of my friends are reading this. If this does happen I need to be life flown to Emory.

So there it is my AVM post that I have never written. Hope I did not scare any of my family and friends. Its better to understand and accept the issue instead of hiding it. I know I will go to haven to be with Jesus. I just don’t want to leave my wife and family.

PS: Ohh forgot one thing.. My seizures are under control by using Lamictal...

I know what you mean, Brian…I never know if a bad headache is bad enough to go to the hospital. I used to go to the ER a lot, but now I don’ t go because I don’t want to be embarassed when it’s not a bleed. I’m kind of afraid that I’ll die when I do bleed because of this.

Fortunaetly I’ve never had a seizure. but worry about feeling pressure in my head. I have 2 AVMs, one treated and the other larger one may be treated with gamma knife (if I decide by next month).

Brian, I get scared too, worry about the pains I get in my head,I never had a seizure but was treated with gamma knife three months ago for my avm, a month after the treatment, ive had head pains most everyday, hoping this is a good sign, The headaches I dont worry about they have been a part of my life forever, really dont remember when I didnt have them, But dont worry and stay positive, yo are doing great so far and God is on your side.:slight_smile: Caroline

I just wanted to say hang in there. You have already dealt with ADHD, learning disabilities, seizures, headaches etc etc. You are a survivor. My thoughts are with you

Brian, I have had it all. But I know these are all challanges that life has for me. Stay strong and keep the faith. DO NOT EVER give up. Don’t let this monster beat you. You are bigger, better and stronger.
Promise me…