Stephanie’s Story

By: Stephanie Knier

My name is Stephanie and I was diagnosed with epilepsy when I was 10 years old. I am now 24 years old and living with intractable seizures. My first brain surgery was when I was 10 years old at The Children’s Hospital of Philadelphia. I had an Arteriovenous Malformation (AVM), which is an abnormal mass of blood vessels. It was the size of a large strawberry and the surgeons removed it successfully. There were no guarantees at the time that I would be seizure free, so I was put on medication.

My seizures were what they call “focal”, and they only occurred in my arm and eyes. I lived with my seizures for 6 years until I finally decided to do something about it. I talked to my doctors and asked them if there was anything new that they could do to stop my seizures.

When I was 17 years old I decided to try the exploratory mapping surgery. They placed a grid in the left side of my head under my scalp in the area they thought the seizures were originating. When they placed the grid in my head I was doing very well. The doctors decided to send me right to the pediatric unit instead of the PICU. Unfortunately, I had some problems. I ended up with a subdural hematoma and had to get rushed into surgery to remove the grid.

After I had gotten better we all decided that we had gone this far, so lets go all the way. I was readmitted and the grid was placed back in my head. They did the necessary testing to find the exact location of the seizures, and then proceeded to remove scar tissue and calcium from that area.

After the surgeries, I had missed a quarter of my senior year and wasn’t allowed on the football field. I was the manager for the football team, and was very close to them, so I was very upset. I did very well for about 1 month then the seizures came back. After I graduated high school I asked my doctor if there were any other options for me. She told me my only other option was a Vagal Nerve Stimulator. This is an implant they put right under your collar bone. That implant has a wire coming out of it that attaches to the Vagus Nerve in your neck.

After the procedure I was put back on my medication and was counting the days until I could drive. I waited, impatiently, for 6 months until I was seizure free and FINALLY got my permit. I was so excited to take my driver’s test and get my license. I could finally drive and got my own car and a job that I could drive myself to. I had it for a year and a half, and one day at work I had a seizure in the bathroom. I called my father and told him because I couldn’t drive myself home, and we got in contact with my doctor.

Ever since that day it has been a constant battle for me. I can wake up one day and feel like I can do anything, but the next I will wake up to having a seizure. It’s not something that I would want anyone to live with. I wish I didn’t have to live with it. But I do, and I do it with the strength of knowing that someday I will find a way to conquer this. That someday my voice will be heard without being sympathized for. That someday this will all be over, and I can raise a child of my own without having to worry if they will live my life. I have always said that my seizures are a burden to everyone around me. Now I know that they aren’t. They are just a message for them telling them, it could be worse.

I am thankful for everything I have, the strength and support of my family and even my seizures, because it made me the person that I am today.