I have written several postings for the Insights into Epilepsy blog, but it has been a while since my last entry so let me briefly tell you who I am again. I am 51 years old and I had intractable epilepsy for more than 30 years. On November 7, 2014 I had surgery and I have been seizure free since. I was initially diagnosed when I was eight years old. I was seizure free until I was twenty-one when they re-occurred. I believe that it was almost thirty years ago today that my seizures returned again. They were controlled for about seven years and then returned, and this time with varied frequency and intensity, they didn’t stop until I had surgery last November.
About a year ago when I went in to see my neurologist for my regular checkup, he indicated that they had a lot of success with people like myself who had done seizure monitoring without locating a focal point by using depth probes, which allow them to locate seizures that emanate from deeper within the brain. I met with one of his fellows for what seemed to be the better part of an hour. After I met with him I talked with my neurologist again. The monitoring process is known as Stereoelectroencephalography or SEEG. The process goes like this: They do surgery to implant the leads in 12 to 14 different locations in the brain depending on the results of any previous testing that was done and the symptoms and type of seizures. After asking a lot of questions and talking with my family I decided to go forward with the SEEG. If they were successful in finding the focal point I would then make the decision on whether or not to have the surgery.
They scheduled the SEEG in early September. I was in the hospital for approximately 10 days and they were able to locate my focal point. As anyone who has been through seizure monitoring knows, it is not a pleasant experience to go through. This was the third time for me. They found two focal points. After asking a lot of questions and weighing the odds, I decided that even at 50 years old I was young enough and the percentages were good enough that I would go ahead and have the surgery.
This was not an easy decision to make and I spent a lot of time thinking about it. At this point in my life, I had come to terms with my Epilepsy and accepted it as a part of my life. On November 7, 2014 I had the surgery. After the surgery, while I was in a skilled nursing facility, I fainted when I went to the bathroom and broke three metatarsals in my foot. The fainting spells necessitated my staying in the skilled nursing facility longer than originally anticipated. In early December some swelling, which was normal in a procedure like the one I had, became infected and I ended up back in the hospital. They opened up the wound and washed out the infection. The infection required that I be on IV antibiotics for the next ten weeks. I finally went home on January 17, 2015 and I was back to work full time by the beginning of February just in time for Tax Season.
The irony of all this is that I had finally come to terms and accepted Epilepsy as a part of my life and now I am finally seizure free. If there is a take away from my story it is that you should never lose hope. It is possible to
come to terms and successfully live with epilepsy and we should never lose hope that we may one day be seizure free. If things remain the same, in May I can start the process of getting my driver’s license again. Never give up hope!
Congratulations Mike! You area true inspiration to us all!