My name is Jason. I am 35 years old and I live near Tampa, Florida with my wife and two children.
I had a pretty normal childhood growing up in Cleveland, Ohio. I went to private schools and participated in musical theater. I played football, but after I had three concussions I pretty much stopped playing sports.
After high school, I went to Mercyhurst University in Erie, Pennsylvania. I wanted to be a theater studies major, but ultimately decided to get a degree in education. As a teacher, I realized that I would have a chance to perform for kids in the classroom every day.
It was in my junior or senior year of college that I started having seizures. At first, it was just little things. I would shake a bit in my sleep. Then one night, I bit through my tongue during a seizure and woke up in a pool of blood.
I went to the hospital, saw some neurologists and was prescribed anti-seizure medications. The doctors told me that if the seizures were happening frequently, I might have epilepsy, but they never actually diagnosed me as being epileptic.
Frankly, I did not want to believe that I had epilepsy. I thought I was being tough and manly, but actually I was in denial. Since my seizures only happened at night, most of the people around me were unaware of my condition. The seizures did leave me exhausted, which added another layer of difficulty to my final year of college as I tried to fulfill all the requirements for my degree and still enjoy a social life.
Nonetheless, the seizures did not prevent me from graduating college. After graduation, I moved to Florida and found a job as an English teacher. Outside of work, I performed in community theater. In fact, I met my wife through theater – we acted together in a play as husband and wife, then got married for real in 2009.
It was my wife who prompted me to take epilepsy more seriously. She had a brother with epilepsy, so she knew something about the condition and she was not satisfied with the care I was getting from the doctors I had been seeing. With her encouragement, I started seeing an epileptologist at the Mayo Clinic in Jacksonville.
At the Mayo Clinic, my doctor started to figure out what was really going on in my head. I was admitted to an EMU (Epilepsy Monitoring Unit) for a week of EEG monitoring. Unfortunately, the EEG monitoring could not determine where the seizures were originating in my brain. At that point, my doctor felt surgery was not an option and he continued to treat me with anti-seizure medications.
Over the next few years, I was having three or four partial and simple complex seizures a week – still always during the night – but I would only have a generalized seizure once a year that would land me in the hospital for overnight observation.
I hated the stress of always wondering, “Will tonight be the night that I have a bad seizure?”
In 2012, my wife’s career brought us back north to Pennsylvania. I started looking for teaching work, eventually landing a job in a school district outside of Harrisburg.
In Pennsylvania, I found the medications were becoming less effective at controlling my seizures. We had an infant at home now – our son Gabriel had been born in 2015 – and I found it harder to deal with the fatigue associated with my seizures. One of my medications had the side effect of making me short-tempered. I would lash out verbally at my wife over the smallest things.
My wife was pregnant with our second child and I knew that I needed to find a better way to deal with the seizures before the baby arrived. With a referral from my doctor at Mayo Clinic, I connected with Dr. Sperling, Director of the Jefferson Comprehensive Epilepsy Center in Philadelphia.
Dr. Sperling said he thought I probably needed brain surgery if I truly wanted to reduce or eliminate the seizure activity. He recommended more testing to try to pinpoint the place in my brain where the seizures started. Once again, I entered an EMU at Jefferson Hospital for EEG testing. When the EEG sensors did not conclusively show where the seizures started, I had more testing through monitoring with depth electrodes.
This testing showed that the seizures started in a place in the parietal lobe that was responsible for the movement and sensory ability in my left arm and leg. Removing that portion of my brain was not an option because it could leave me partially paralyzed.
Instead, my doctor gave me two options – I could participate in the clinical trial for a new anti-seizure medication or I could have surgery to implant the RNS System.
At that point, our second child was due in six months. I did not want to put my wife in the position of having to care for a newborn, a toddler and a husband at the same time. I wanted to be recovered by the time the new baby arrived, which is why I did my research and decided to go ahead and schedule the surgery for as soon as possible.
My doctor spoke to me about the risk of SUDEP (Sudden Unexpected Death in Epilepsy), and that definitely played a role in my decision to proceed with the RNS System, knowing that if it helped prevent seizure activity it could perhaps give me more time with my kids.
The surgical date for the RNS System procedure was scheduled for one month later. The surgery to implant the RNS System took about four hours. Afterwards, I remember being transferred to the Neuro-ICU, but I don’t remember a lot about that day because I was on a good amount of pain medications.
Within a few days, I was walking around and discharged from the hospital. Once I started recovering at home, my goal was to get back to work as quickly as possible. Every other school district where I’d taught over the years had offered short-term disability insurance, but my current job in Pennsylvania did not offer that insurance, so I was losing income while I was out of work. With one child at home and another coming soon, I wanted to start working again as soon as I could.
Within three weeks, I was back teaching a few days a week. Just a couple weeks later, I made the decision to go back full time. I felt happy that I was strong enough to get back to work sooner than my doctors had expected.
The first couple of months after I had the RNS System implanted, my medical team just used the device to monitor my seizure activity. Then they turned on the therapeutic aspect of the device and gradually programmed it to detect and respond to abnormal activity in my brain to stop my seizures.
I soon noticed that my seizures were not as frequent and that they did not last as long when they did occur. In fact, the last couple of times that I had seizures – they were so light that I did not even fully wake up. My wife still recognized what was happening and could tell me about the seizure the next morning.
After I had the RNS System implanted, my doctor started me on the clinical trial drug he had mentioned earlier. Since I reached the therapeutic dose on that drug, I have not had any seizures at all over the past few months. I attribute most of my improvements to the RNS System and the rest to the clinical trial drug.
With the RNS System, my seizure activity dropped about 75 percent – from two or three seizures each week down to just two or three seizures per month.
And the seizure intensity decreased to the point that I barely even know the seizures are happening.
Now that I have the RNS System, I feel more confident taking care of our children. With our first child, when the baby had a problem in the night, my wife had to deal with the situation 100 percent of the time. Now, I feel like I can contribute. In fact, my wife’s career has advanced to the point where I am now the primary caregiver for both of my kids. I never thought it would be possible for me to take care of a 3-year old and a 10-month old, so it’s a huge confidence boost to be able to do that.
I do still feel tired in the mornings – some of that is due to the side effects of the medications I’m still taking, but a lot of it could also be attributed to being the caregiver for two small children!
As for anyone living with epilepsy who might be considering the RNS System, I’d say the most important thing is to find a good epileptologist that you trust at a Level 4 Comprehensive Epilepsy Center. Ask that doctor all the questions you have. Talk to your family and friends to see what questions they might have. Also, having family and friends that will support and help you through this journey has been especially important to me.
Personally, I’m confident that getting the RNS System was the right move for me and my family. It’s been a long journey to get here, but I feel like I’m in a good place now.
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.