My name is Ann. I’ve had epilepsy for at least 17 years. That was when I had a grand mal seizure, although in hindsight, I believe I was probably having small seizures even before that. There were times when I would lose the ability to read or understand printed text.
I work as a nurse in the cardiac intensive care unit at a children’s hospital. Due to the epilepsy, I’m not able to participate directly in patient care, but I’m lucky to have the support of my nursing manager and nursing director who have allowed me to stay in the unit to supervise other nurses.
Epilepsy can be hard, but sometimes I’ve gotten into situations that just make me laugh. One time I was in a staff meeting with other nurses when I had a seizure. They all jumped up and ran out of the room looking for help. Later, I scolded them saying, “You’re nurses! Don’t run away when someone’s having a seizure!” They said they didn’t know I had epilepsy, but I reminded them that they could have looked for a medical alert bracelet.
I’ve been taking anti-seizure medication for years, but the medicine gradually became less effective. My doctors increased my dosage and tried adding different prescriptions. I kept a seizure diary and I could see that I was having more and more seizures each month.
Finally, I decided to have epilepsy surgery to remove one of my frontal lobes. I was admitted to the hospital for a couple of weeks while doctors monitored me to discover the source of my seizures. After I was discharged, they called me with the news that the seizures originated in both frontal lobes. The surgeon was willing to proceed with removing one of the lobes, but he told me that I would still have some seizures.
I didn’t see the point of the surgery if it wouldn’t help me be seizure-free, and since removing both lobes wasn’t an option, I declined the surgery altogether.
At that point, I was taking the highest possible doses of three medications. I was still having seizures but the medications tired me out so much that I would fall asleep in the middle of the day on my days off work. Looking for alternatives, I considered vagus nerve stimulation, but I didn’t like the idea of having my voice altered. So I started taking a fourth medication as part of a clinical trial. Despite all the medicines, I was still having more than 30 seizures a month.
A couple of years ago, my doctor told me about the RNS System. He explained that the RNS works like a pacemaker, but the difference is that the RNS System treats the brain, where it senses seizures and tries to prevent them before they can start. In autumn 2014 and spring 2015, I had the RNS System implanted in two phases. The surgery itself was easy; I didn’t experience any complications or pain.
Since the RNS System, my seizures have decreased by 40 to 50 percent. My seizures seem to come more in clusters now, where I’ll have a bad day or two, and then I might go a week or more without any seizures.
I did have a 19-day period where I did not have any seizures, so I was really pleased about that. I also feel like I have more energy now than I’ve had in a long time.
At work, I still can’t take care of the patients on my own, but at least I can get more involved in their care. For example, I can now look after some of the more stable patients for half an hour while the other nurses get lunch. Or when a patient comes back from the operating room, I can assist another nurse by entering data into the electronic health record. So I feel more like I’m part of my unit now than I used to be.
With the RNS System, I recently flew to California by myself. I never would have done that before without having my husband or someone else traveling with me. It wasn’t a direct flight, and I would have worried about having a seizure and not being able to get off the plane or not being able to find my connecting flight.
The RNS System gave me the freedom to travel independently. When I got back home, I was so pleased with myself for having taken that trip. I feel a lot more confident.
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.