I am big fan of “The Epilepsy Network “, for a while. My story began when I was 22. I began having seizures several months after my mother passed away from Cancer. I was a caregiver along with my father. After a couple of seizures, my father ended up taking me t Johns Hopkins and have an MRI taken.
After the MRI, we were explained by the neurologist that I have an arachnoid cyst on the front of my left hemisphere of my brain and what is called “Agenesis of the Corpus Colllosum”, hole in the middle of my right hemisphere of my brain. Both congenital. They believe that my seizures were dormant for the first 22 years of my life and the death of my mother is what started it.
For 19 years, most of my seizures were Tonic Clonics, occurring when I was asleep. I was able to work during this time. In 2005, they began to occur while awake and at work. The first 19 years, I was avg. five seizures a year. After them started during the day I could avg. a day. You can say that I have been on almost every seizure medication. In 2006, my neurologist suggested the Vagas Nerve Stimulator. That does ok on Complex Partials or Petites.
My seizures have been getting worse, I was avg. 89 different types of seizures a month. I have a new neurologist out of Penn State Hershey and got me a “Neuropace “ implant. That was in 2016, I am known as the “Unique Case “. I found out that I was the 852 person to ever receive this implant. I have a rep. from Neuropace, my neurologist and Med students, watching me. I am not really a person, who wants all this notoriety!
It is taking longer than usual but my seizures are happening not as bad as a year ago. I am now at 51 seizures a month. Hopefully, this time next year, I’ll be Seizure free!
