My story is about being a survivor. At the age of two I was adopted making no information available of when or how my epilepsy got started. Through various tests done over the years, including x-rays, it appears that I had a head injury as an infant.
My journey has not always been an easy one, before I was put on my current medications, Keppra and Vimpat; there were two other medications that had the most impact in my life. The first medication was Mysoline, which unfortunately made things worse. Thanks to my mother’s perseverance we were able to get an appointment at the National Institute of Health (NIH) just outside of Washington, D.C. where I met with one of their top neurologists who immediately took me off the Mysoline explaining that the medication played into my anger making me hostile, causing me a lot more stress than needed. So instead of helping me it made matters worse; he switched me over to Tegretol, I still would have seizures but the anger went away. My seizures categorized as simple partials, not petit mals, would usually occur at night just before nodding off to sleep. On occasion I would have mild seizures in the day time, but that was extremely rare, I could go without a seizure for up to six months. When one occurred I would lose consciousness, start making noises or repeat myself and stare off into space, which lasted between ten to twenty seconds.
In May of 2010 the Tegretol stopped working causing me to have a series of seizures that were unstoppable. My husband took me to the emergency room at CPMC that is when they changed me over to the two new medications I mentioned above. For approximately three months the new medications prevented me from having any seizures, my neurologist made me aware that I was in what he called a honeymoon period and that after three months things could change or stay the same. My seizures started to act up again, although they were not of the severity of the ones I mention above. In fact I could have a seizure while walking down the street and no one around me would be aware that I was having one.
The next time I met with my neurologist he showed me a model of the brain and told me that because of where my seizures were coming from, the left temporal lobe which is where the scar tissue had been discovered, I was an ideal candidate to have surgery which could lessen or quite possibly relieve me from having any seizures. Although as he explained that is rare but not impossible and that over time they might be able to reduce the amount of medication I was taking daily.
Before I could have the surgery I had to go through a number of tests including a neuropsychological, cognitive and WADA test. When the test results came back I was told if I elected to, I could have the surgery. After carefully thinking it over, going through the pros and cons of what could happen to you during and after the procedure I decided to go forward. I am so thankful I did, not only do I have a great husband who has supported me through this whole journey but I also have an excellent team of doctors who treat you with respect, they’ll take their time to talk and listen to you as an individual.
In May of 2011 I had my surgery which lasted approximately six hours. I was placed in the Intensive Care Unit for twenty four hours. When I finally woke up from the surgery I remember seeing my husband sitting next to me, I was too sleepy and full of pain medication to talk, he said good night and left the hospital.
The next day I was strong enough to be placed in a regular hospital room, both of my doctors checked in on me. I also went through physical therapy, which included walking and balancing exercises. The nurse who assisted me was extremely pleased with my speedy recovery.
I was in the hospital for just over two days, I read that the normal recovery time can be anywhere from four days to a week. On my third day in the hospital my surgeon checked in on me, he asked me how I was doing, I told him fine just a bit tired and that the left side of my head was hurting. When he asked me if I’d like to go home that day, I couldn’t believe it. My response was “if you think I’m ready to go home I’ll go home,” I was allowed to leave that morning.
Since my surgery I have been seizure free, and have had little or no side effects, in fact when someone finds out that I have had surgery their first reaction is “you don’t look like someone who had surgery”.
I am so pleased that I had the surgery; it has given me a new lease on life, not just within myself, but the way I view everything around me, including people, places and daily situations. I told my doctors “I feel like the weight of the world has been lifted off my shoulders, there is a much calmer feeling inside me”.
I can now focus on more important things which include getting the information out to everyone about epilepsy so that people understand seizures, making them aware of what to do or not do when they take place, not only with the individual having the seizure but for those observing it.
Everyone is a unique individual, which makes me understand that your results may not be the same as mine. I also realize if you’re allowed to have surgery, electing to go forward with it is your decision, but I do want everyone to try and take the next step, because until you do, you may never know what is possible or what is out there for you.
We are all survivors, so let’s work together to make epilepsy more understandable and livable for everyone.