Susan’s Story
I am 60 and am living my life seizure free for 10 years! I can drive now. I am positive proof that sometimes there is a way! I had epilepsy for 50 years. It wasn’t fun.
My seizures began as an infant. I was just 10 months old when I had a grand mal seizure. Taken from my grandparents house to the children’s hospital. I then had, what I know now, absence seizures. I would get a stomach ache and feel as if I would throw up. I went from Dr. to Dr. and got nowhere as a child. They even did an abdominal exploratory, took my appendix out while they were there. They never diagnosed it as epilepsy ’til I was 16 years old. I had seizures every month, clustered into 3-5 days. Had a hard time being labeled Epileptic. I was in High School when depression set in. Suicidal tendencies followed me throughout my life. Until I was about 55 years old.
My Neurologist at the time, worked with me and decided to have the Vagus Nerve Stimulator implanted in my chest and the leads to my neck in 2000. This stopped my seizures for over 5 years. I could even drive, which I haven’t since I gave my license up when I was 18 yrs. old. I was enjoying this new freedom! It was great but it had its drawbacks. I would notice my voice was raspy as the VNS is right next to your vocal cords. I even had the stimulator surgically replaced after the battery died. This was 2005. A few years later my seizures returned and seem to be sporatic. I just let the battery die out as I didn’t wish to have another surgery to remove it. My Dr. retired and I had to find a new, younger Neuroloigist.
My Dr. did a years worth of tests. A running EEG at Sparrow Hospital. I had to stay there for 6 days and be hooked up to the monitor and Video taped. They wanted to see me actually have a seizure. After 4 days and nights they decided to speed things up by having me exercise and reducing my meds. It finally worked.
They did other psychological, hearing, memory, and vision tests. They were trying to see where my deficits were.
I only had 1 more test to go. It was July 28th. This one was a WADA test. They had me in a operating room, with 2 Neurosurgeons working on me. I previously had discussed all the risks of the procedure. I asked about having a stroke an the 2 Neurologist said oh no, don’t worry. That’s like 1 in 10 million chance of happening. Just sign here. So I signed. They had to have me awake during the procedure because they were going to check my memory. The Neurosurgeon inserted a probe into my right side, into my groin, up past the heart and neck, and then into one side of my brain. They had to put one side of my brain to sleep, so they injected some medicine. They went to the other side and 1/2 hour later they did their testing. This was to help them in mapping out my brain’s function. They asked me about history, Math problems, to keep subtracting 7 from 100 and 93… After all of this they removed the catheter part way because they would do the same test to the other side of my brain. First they had to wait about 1/2 hour for my brain to wake up. Then they put to sleep the first side. They completed the testing and only had to remove the catheter. This is when the Neurosurgeon dislodged a blood clot on his way out. My arm went limp, just like they told me. I was having a stroke!
They realized it was a Stroke and began to ask me the typical questions. What date is it? Who is the president? (Obama at the time) can you count back from a hundred? All those questions would have to wait, as I couldn’t talk.
They rushed me up to the 6th floor stroke ward. It took a while for me to even stand yet alone speak or read. I stayed for about a week. Then I had outpatient therapies for speech, vocational, physical and a nurse. I worked on my therapy myself after that.
My doc then asked if I was ready to do the surgery?!! I said that would have to wait till I recovered some. 9 months later, in April, i had a team from U. of M. Perform the partial lobotomy. They removed my right hippocampus. This is where they found it started from. They stapled me up and sent me home to recover some more.
I was sent home on Keppra. He said I would have to be on it for at least a year. After a long struggle to recover from not only a stroke but also brain surgery, guess what? I don’t have any more seizures! It took a lot of hard work on my part and that of my family.
That was in 2012. The Doctor took me off the Keppra. I was now free from all my anti-seizure medications. In 2013 he then gave me his permission to get my driver’s license back! I started off slow at first, driving with my teen daughters. Talk about role reversal! I am currently on SSDI but am in the process of getting a job and hopefully getting off it. I am strong now and just walked the equivalent of a 5K for four days in a row! In fact I walked my first 5k with my daughters in 2015! Some short term memory loss, get fatigued at times, process things slower, and have a loss of words. These happened to me while I was on the anti-convulsants though! If you saw me when I was on the medication, and now, I think you would find I am back to 95%. I feel great at 60!
This isn’t for everyone, but I wish more Doctors would try. Good luck to you on your journey.