In 2003, I underwent a right frontotemporoparietal craniotomy and anterior temporal lobectomy, hippocampectomy, as well as functional brain mapping to help combat the seizures that were creating numerous problems with my day-to-day life. It simply came down to this: The surgeons needed to take part of my brain, or the seizures could take my life.
The surgery was a success…in my battle with epilepsy. However, near the end of the procedure I had a stroke. Even this particular event was a great success for me. I learned some amazing skills when learning everything again for a second time. The patience I developed for my children in learning new tasks was immense. If they took extra time learning to button buttons, I completely understood. I had recently learned that task myself; it was not as easy as it may appear!
So yes, I would have the surgery again if I knew the possible outcome. For seven and a half years, I have lived a life free of seizures. In 1988, I had my first “spell” in school. Despite this complication, I had a full life and accomplished a lot. Seizures were always there. Since 2007, I have been free of all medications! I no longer use something that regulates my seizure activity but then causes unavoidable, dreadful side-effects. However, as thrilled as I am with my life currently, there are questions that have never been answered. In part, it is these questions that have created my intense interest in the world of neuroscience research:
I remember a lot of my surgery. Some of the memories are very vivid while others are foggy. How can that be? Why is it? In October 2002, my seizures became so bad that memories were wiped away and never again retrieved. Yet, surgeons went in and removed the brain tissue from that same area, and my memory became sharper? I woke up when they were sawing into my skull. I remember the odd sensation and knowing that it was not quite right, but also not minding. I remember the sound of the saw and the dust that was being produced. I remember wondering if I was bleeding and laughing out loud. I told the doctor I have a whole new appreciation regarding the chalky taste of Pepto-Bismol. They told me to relax, hold still and then talked to each other. How do I remember that? How do I remember the horrible, painfully loud sound of the retractor clicking and the feeling of my brain bouncing back and forth and back and forth? I remember I thought of a Jell-O mold bouncing back and forth. How do I remember feeling the aura before my first seizure and the person standing beside me saying, “Hold on Tara we are almost done. Everything is going to be all right.” Yet, I knew, I had the distinct feeling, that it was not going to be all right when I came out of the seizure. How do I remember all of these thoughts even though I cannot remember being pregnant with my second child or her birth?
I understand that the stroke was in my thalamus. I have regained most feeling on my left side. In regaining sensations, why did it make the wind feel as if it were burning me when it blew against my arm and rain drops feel like needles going in through my bone for over a year?
How did this lobectomy with a CVA (stroke) in the thalamus result in a significant loss of sight? Can the optic nerve reconnect from the damage that was done and provide complete eyesight ever again? If so, will I be able to know my own children’s faces at that time? Was prosopagnosia linked to my eyesight loss?
I joke often and tell people I had the brain surgery because doctors thought I was way too smart. They wanted to equal me out with the rest of the population, so they took out a nice chunk of my brain. As for now, I am grateful to the doctors for their help and someday, maybe with the help of great researchers, we will have these answers I am seeking. Until then, I am so thankful for everything that I do have currently!
Update: My seizures did return April 18, 2011. There is till no regret at all for having had the surgery to help ease my seizures.