My name is Carlo I am 28, and I have had epilepsy for 28 years. My childhood was sprinkled with periods of activity and inactivity. Growing up, everyone has their own goals to achieve. My plans were to get married, start a family, be successful and live a happy life with a happy family. For the most part, my seizures were controlled with medicine, but all of that was about to change.
In college, after being seizure free for 5 years, I was weaned off of my anti-epileptic medication. I felt free. About 6 months after graduating from college and starting my career I started having complex partial seizures that originated from both temporal lobes. During this time, my seizures got progressively worse and more frequent, despite trying multiple anti-epileptic drugs. I would have clusters of 3-5 seizures at least once a week and on bad weeks I could have up to 15.
These episodes would ruin my day because I had difficulty remembering. I had to rely on others to tell me if I had a seizure, I felt helpless and burdensome.
It impacted my ability to function in everyday life. I found myself constantly waiting for a seizure to occur. Since I don’t have an aura I have no idea when the seizures are coming. This has taken away my freedom. No more driving, no more going out by myself, and now depending on everyone for something.
I thought since I was unable to drive I was going to lose my job. If I was not able to drive, then where was I going to work? That really started to stress me out. I was a prisoner to epilepsy. I was always anticipating a seizure, there was never a moment that epilepsy wasn’t my first thought.
I have been relying on people for almost everything. I had to get a ride to work, a ride to the store, or to wherever I wanted to go. It gets very annoying very quickly. My seizures may make me look like a crazy person to someone who doesn’t understand what complex partial seizures look like. So, whenever I would be around people, I was absolutely terrified of having any activity, because I knew I would be embarrassed. I felt like I was being babysat by my family and friends, we couldn’t go out without someone watching me the whole time. I didn’t really have a social life anymore.
These seizures were not controlled by medicine, and we needed to find a solution. After about a year and a half of trying to maintain a productive life while dealing with uncontrolled seizures my neurologist referred me to an epileptologist at a level four epilepsy center.
The first meeting with the doctor was overwhelming. He started with a statistic that after the 3rd anti-seizure medicine, any additional medicine has a <5% chance of being able to manage seizure activity successfully. I was already on my 4th medicine. Hearing that I thought there was no way of beating epilepsy. He then informed me that my best chance of becoming seizure free was to consider surgery. I never knew that surgery was even an option. At first I was leaning towards a lobectomy, because after talking with some people it was the only surgery I knew of. This was the only way I thought my seizures would go away completely.
At the end of testing, they thought that the RNS system would be the best option for me because my seizures originated from two places in my brain (both of which were my memory centers). If we were to do the lobectomy I may have lost portions, if not all of my memory or my ability to form new memories. I learned that the RNS System is a smart device that can help identify my unique brain waves over time. The device would be specifically tailored to me. So we decided to move forward with the RNS option.
Prepping for surgery did not really put too much stress on me; honestly, I was more nervous about my wedding 3 weeks later. The surgery was pretty quick and successful. I was able to return home the next day. It baffled me that I was out of the hospital within 24 hours of having a brain surgery, but I felt pretty good.
The RNS system is very easy to use on a daily basis. I almost forget that I even have it in. If you were to touch my head, you would barely be able to notice the device since it sits flush with the skull.
My scar isn’t noticeable since my hair has grown back. If I didn’t tell anyone that I have the device in, they wouldn’t even know it was there.
The RNS device is working around the clock to monitor and detect activity in my brain that might lead to a seizure. When it picks up on abnormal activity, the device will activate, but I do not feel a thing. It is constantly collecting data and notes where my seizures originate from and what times of day they occur.
One of my favorite things about my device is going to the doctor and comparing the amount of seizures I’ve noted and how many the device may have stopped.
Some months are worse than others, but being able to experience the months with only 1-2 seizures makes the whole process worth it.
Together we can make informed decisions on changing stimulation parameters on the RNS device to better identify and prevent my seizures. My doctor has also used RNS data to make recommendations on when I should take medications.
When I have a seizure, I am able to use the NeuroPace magnet to timestamp the seizure activity. Since I do not have auras before my seizures, it is difficult for me to use the magnet to timestamp my seizures by myself. However, if I am home with my wife when a seizure occurs she will mark the event for me with the magnet. If we are out or if I am at work and a co-worker tells me I had a seizure sometime after the event, I can manually note it on the My Seizure Diary website.
This works really well for my family and I because the RNS is always collecting data on my seizure activity, and let’s say in 5 years the data shows 90% of my seizures are originating from one location, a lobectomy could be a viable option for me. For another scenario, let’s say something more effective comes out to control seizures 5 years from now, my device can be removed.
Every night I take time to download my data, which only takes a few minutes. It is kind of like brushing your teeth; you just get into a routine. Then about once a week I upload the data I’ve collected all week to the database, pretty simple.
Learning more and more about the RNS device, the better it seems. It takes a little bit for the doctors to program it correctly, but the more they tweak it the better it gets. I had the device implanted January, 2016, and since then my seizure count has dropped 90%. We are moving in the right direction, and I am extremely happy with everything that the RNS device and my medical team have done to help.
This has helped me to return to work in a modified setting. It was very hard for me to open up to my colleagues, but now that they know about my device and seizures they can inform me when I have an episode and we can move on with our day, the embarrassment has gone away.
Besides having the RNS device placed, we have made some other life changes to help improve my quality of life. We moved close to my office so I can commute to and from work every day by myself. This has helped me establish my own schedule instead of working around my family and friends. I feel confident that I will be safe when going out by myself. We have also made a conscious decision to accept our “normal”. Our “normal” may not be conventional, but it works well for us. I have also made an effort to see the positive side of things instead of focusing on the negative. My journey with epilepsy has brought my family closer together, my relationship with my wife stronger, and improved my outlook and appreciation for life.
Through this whole process, my wife and I welcomed a beautiful baby girl into our lives. She has truly been a blessing in my life. Before she was born, I worried about having a seizure while holding her. Would I drop her? Would she be safe? Without the RNS System, I would not have been able to safely hold Giada or take care of her by myself due to the frequency of my seizures. I feel much more comfortable now knowing that the device has been working so well.
The RNS System has been a complete life changer for me. Instead of sitting around and waiting for the next seizure to pop up, I can go out and live my life. I have regained my freedom. My memory has improved since, and my seizures have reduced in severity. I got married three weeks after surgery to my beautiful wife, returned to work, and now, a little over a year later, we have a beautiful daughter.
Looking back at the goals that I have set from a young age, I can check all of them complete. I graduated college, got married, started having children, am successful, living happily with my family, and I am looking to a happy future with them!
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.