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. It’s 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 driver’s 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 – 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 wasn’t 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 – it’s over before I know it.
When I go in to see my Epileptologist, I always look forward to seeing my brain activity that I’ve collected from the RNS System. Whether observing normal brain activity or an aura, it’s always something new.
It’s been really helpful during my appointments to see data that shows what happens when my RNS System intervenes with my brain’s electrical patterns that might lead to a seizure.
Before the procedure, I was having 1-2 clinical seizures a month, and, as of today, I’ve 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 I’ve had the RNS device placed. I’ve moved into a house with Lauren, became my own boss, gained confidence, and countless others.
I’m not sure these positive changes would have happened had I not taken that next step in my treatment journey with epilepsy.
There’s no way I could have become a consultant before the RNS System– 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 I’m 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 “aggressive,” according to what my Epileptologist sees when he views my data – improvements all around!
Even though I’ve had the RNS system for three years, I haven’t yet reduced any of my medications. That’s simply because I’m happy with where I’m at – things are really good in my life.
My personal relationships are becoming stronger each day, my career is taking off and I don’t want to have any setbacks due to trying a decrease in my medication.
Lauren and I moved into a home together two years ago – even got engaged. My epilepsy played a role in why we didn’t live together – she has a full-time job and wouldn’t 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 “next step” 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 I’ve 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. Individual results will vary.