My name is Janie. I live in Georgia with my husband and two children. Epilepsy has limited my life in all sorts of ways. For example, before I had the RNS System, I could not drive a car. That means I could not take my children to lunch at McDonald’s on my own. Every time I wanted to go somewhere, I’d have to ask my mom to help me or call my husband and have him leave work to drive me around. While other people could decide on a whim to go to the mall or drive somewhere to meet their friends, I never had that freedom or ability when I was having my seizures.
I think I’ve had seizures ever since I was a child. No one is sure about the original cause, but some people think it could be related to the fact that I had spinal meningitis when I was five months old. I’ve never had auras or grand mal seizures.
I could still function while I was having a seizure – lift my arms or walk up a flight of stairs – but I would be confused and disoriented. Afterward, I would feel exhausted.
The seizures seemed to get worse when I was pregnant. Later, after my son had been born, I would have seizures where I would lose all track of time. I would have no memory of what happened during the seizure and no idea whether minutes or hours had passed. It got so bad that I was scared to hold my children, because I did not know if I would have a seizure while holding them.
I told my neurologist that my seizures were getting so bad that I was scared to even hold my children. She agreed we had to do everything we could to help stop the seizures.
In 2007, I checked into a hospital for intracranial monitoring. The information the doctors collected from the monitoring showed that I would be a good candidate for the RNS System. I had already tried so many medicines hoping that they would help, but they had not controlled my seizures, so I felt that I had nothing to lose.
The doctors implanted the RNS System in August 2008 and turned on stimulation in January 2009.
Within seven months, I stopped having seizures and I’ve been seizure-free since July 2009. It’s been fantastic!
Now I can drive my children to tennis matches and baseball games. I can do errands by myself. I can go out on my own with friends. I feel safe enough to try things I never could before such as whitewater rafting. It has given me the freedom and confidence I never had before. The RNS System has totally changed my life!
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.