
When I was twelve, a large schwannoma tumor was removed from the right frontal lobe of my brain. A few months after the surgery, my parents were told I had epilepsy. Itās such a powerful word for a parent to hear when a neurologist is talking about their son or daughter. Especially since there was a strong belief amongst my family that we were through the woods after the tumor had been removed.
Unfortunately, over the coming years I would have two more operations and more than a few visits to the E.R. Having grand mal seizures at such a young age changed the way I was treated by those around me. Taking different medications changed the way I treated others. Whether it was mood swings or weight gain, sometimes I would wonder if the medication side-effects were worth it.
After many failed attempts with medications, I had a brain resection at the age of 15 to remove some of the damaged scar tissue that resulted from my first surgery. I was very optimistic and even went seizure free for four years! Once again, we all thought I might never have another seizure.
At this point I had my driverās license, was enrolled at the University of Texas and looking forward to life after college. Unfortunately, life threw me another curveball – I was hit with a seizure while driving home from visiting family.
My college experience changed after that night, but I was determined to find a solution after having been seizure free for four years. I reached out to my neurologist to see what could be done.
The VNS device was the first option presented to me, but I decided against it because of the voice side-effect ā I planned on starting a career in sales.
A few visits later, the RNS System was brought up. After doing some research, to me, getting the RNS device was the best option. I was approved for the RNS device in 2016 and had the procedure done on the day before my twenty-seventh birthday in 2017.
Although it might sound like a negative, I had two seizures while I was in the hospital recovering. My device wasnāt yet stimulating, BUT it was already recording my brain activity. Having been my fourth procedure regarding my brain, I required a few extra days to recover in the hospital.
Before the procedure, I always enjoyed going on hikes with my two dogs or playing tennis with my girlfriend Lauren. My doctors told me to put those strenuous activities on hold for a few months so my brain could heal after its fourth trip to the operating room. It took a month before I was working again and a month after that until I was back on the trails with Lauren and the dogs.
While in the hospital after my procedure, my neurologist spoke with me about how important it was to keep up with scanning my head. I find scanning very easy and it only takes a few minutes ā itās over before I know it.
When I go in to see my Epileptologist, I always look forward to seeing my brain activity that Iāve collected from the RNS System. Whether observing normal brain activity or an aura, itās always something new.
Itās been really helpful during my appointments to see data that shows what happens when my RNS System intervenes with my brainās electrical patterns that might lead to a seizure.
Before the procedure, I was having 1-2 clinical seizures a month, and, as of today, Iāve only had four seizures since I received the RNS device three years ago. Each seizure has been less severe than the previous one.
There have been quite a few changes in my life over the past three years since Iāve had the RNS device placed. Iāve moved into a house with Lauren, became my own boss, gained confidence, and countless others.
Iām not sure these positive changes would have happened had I not taken that next step in my treatment journey with epilepsy.
Thereās no way I could have become a consultant before the RNS Systemā before, if I had a seizure, my brain would be mentally exhausted for days. Now, if I have a seizure I lay down, take a short nap, and Iām good to go. I still have headaches for a day or two after, but my recovery time is what has surprised me the most.
On top of that, my seizures have improved. I know it sounds strange, but my seizures have not been as long, consistent or āaggressive,ā according to what my Epileptologist sees when he views my data – improvements all around!
Even though Iāve had the RNS system for three years, I havenāt yet reduced any of my medications. Thatās simply because Iām happy with where Iām at ā things are really good in my life.
My personal relationships are becoming stronger each day, my career is taking off and I donāt want to have any setbacks due to trying a decrease in my medication.
Lauren and I moved into a home together two years ago ā even got engaged. My epilepsy played a role in why we didnāt live together ā she has a full-time job and wouldnāt be able to drop everything to take care of me if I had a seizure. I was living at home before the RNS System and both my parents worked from home, so there was always someone there to take care of me. With the improvements in my seizures and life overall, everyone felt comfortable with Lauren and I taking that ānext stepā in our relationship.
If I can sum up what the RNS device has done for me in one word it would be: Confidence. The confidence to spend more time with friends, even if that means staying out late. The confidence to travel across the globe and visit places Iāve never been before. The confidence to hope that one day I might be seizure free.
Published on: April 7, 2020
This represents the experience of individual(s) who have used the RNS System. Ā Individual results will vary.