It happened back in May of 2000 when I was 10 years old. I started having a bad headache told my parents and we figured it was just allergies causing the pain. So took a Tylenol figured it stop the headache. We didn’t know there was an AVM in my brain and that’s what was causing the pain.
It was a Friday afternoon when I started getting really bad pain and it got worse. I got blurry vision and lost control of my right side. My parents then rushed me to the hospital. I blacked out and actually flat lined for a bit. CPR was done and brought me back. The bleeding had luckily stopped but had formed a blood clot in the left side of my brain. I was then air lifted to Louisville Kentucky. They did some more MRI scans and said they would have to wait for the swelling to go down before they could do surgery.
I woke up from coma a week later was paralyzed on my right side and was temporarily blind. I went through 2 months of physical, occupational, & speech therapy. I actually was in pretty good physical health within that time but kept having seizures because of the blood clot. So time for surgery.
After my surgery, I was still in the hospital for 3 weeks but was finally sent home. Unfortunately the story doesn’t end there. I kept having seizures every week. They weren’t the big type but would become unresponsive for a minute or 2 sometimes get double vision and occasionally fall down. My neurologist in Louisville then said I should go to St. Louis children’s hospital they have more neurological tech. So in August of 2001 I went to St. Louis.
In St. Louis, they ran some more tests. One that was weird but found the problem was a EEG scan. This wasn’t your regular EEG scan. What they did was remove part of the top of my skull and put a bunch of wires on my actual brain . They then didn’t let me take my pills so that I would have a big seizure so that they could find the problem. It worked but wasn’t fun. They found 3 dead spots in the brain from my rupture so that’s what was causing the seizures. I ended up having 3 more surgeries done and one part was a little scary because I started bleeding again but luckily it didn’t do much damage. I went an entire month without a seizure and was sent back home early November. The doctors then said to try and slowly reduce my pills. Unfortunately, that didn’t work, and I had a seizure. They then made me have another MRI and EEG scan. They figured since I’m missing some parts of my brain the brain cells panic with the gap causing the seizures. They said it’s sort of like a traffic light system. If I’m taking my pills all is well but if not all lights are green brain cells crash seizure. So stick to your meds. I’ve been on the same amount ever since 2002 and went until 2012 without having a seizure. My last seizure wasn’t because of me forgetting to take them but from generic brand. Bit of a funny story actually. The doctors said, “We will just keep you on brand name from now on.”
As for my life now, I’m in great physical health. I do drive, have a job, but my biggest trouble is my short term memory loss. It’s the true hidden scar. It’s not really noticeable but sometimes I might forget something at work or get a little confused when multitasking. Those of us that have dealt with a brain AVM it’s our real hidden scar.