Kaeti’s Story

By February 15, 2019Patient, Written Stories

My name is Kaeti. I’m 29 and I live in Anacortes, on the coast of Washington State.

I had my first seizure when I was about 3 years old.

I had a hard childhood living with epilepsy. It was difficult to make friends, and I experienced a lot of bullying. At school I was known as the freak with the seizures.

Those seizures usually happened every day, multiple times per day. On a typical day, I might have 3 to 5 seizures. On a difficult day, I could have up to 8 seizures.

My seizure symptoms changed depending on the medicines I was taking, but I would often experience an aura warning me that the seizure was about to happen. Then I would be unable to swallow. My vision would go blurry and I would feel a pounding, painful sensation like nails were being hammered into my head. The muscles in my body would all tense so strongly that if I were holding a pencil at the time the seizure occurred I was likely to snap it in half.

These seizures would typically last a few minutes. Afterwards, I’d be absolutely exhausted.

My pediatric neurologist was really caring. He worked so hard to find a good solution for me. We tried lots of different medicines, but they were not able to control the seizures. Well, there was one medicine that seemed somewhat effective, but it affected my mood, making me really angry and violent. When I was on that medicine, I punched one of my friends. I knew I had to stop taking that medicine or it would make it impossible for me to continue with my education.

School was difficult enough already. The seizures and the medicines made me tired and affected my memory. I tried to play sports and briefly joined the volleyball team, but the seizures got in the way of that too.

When I was a teenager, my neurologist suggested that we try intracranial monitoring to see if I would be a good candidate for resection surgery. The tests found that my seizures originated in the motor cortex in the brain, which explained why my body essentially ‘shut down’ during my seizures. Removing any portion of that lobe would risk paralysis, so there was not much the surgeon could do.

Learning that I was not a candidate for that surgery was a devastating blow, but then my neurologist told me about the clinical trial for the RNS System.

At the time, I was only 16 years old, and I was so frustrated to learn that I could not join the study until I turned 18. I remember joking to my neurologist, “That’s really rude! Why would you tell me about the program when I have to wait two years to sign up!”

As soon as I turned 18, I told my neurologist to sign me up for the trial. My mother was a little concerned because the technology was so new. She thought maybe we should wait for the device to be approved, but I wanted to try whatever it took to help control the seizures.

In 2008, I became one of the first patients to have the RNS System implanted at Swedish Medical Center in Seattle. I really wasn’t nervous at all about the surgery. The main thought running through my head was, “Let’s do this!” My sister Maegan, who has also been along for the whole journey with me, was right there with me encouraging me that I was doing the right thing.

All those years that I had been bullied and felt like an outcast growing up, I had hoped there would be something – anything – that might help control my seizures.

One of my concerns when getting the RNS System was making sure that the surgeons did not cut off all my hair. When I had gone in for the intracranial monitoring a few years prior, they had shaved off most of my hair without warning me, which was a traumatic experience! I made the surgeon promise that he would do his best not to remove too much hair.

I was so excited when I woke up from the RNS System surgery to find out that I still had my hair! Other than that, I felt pretty much OK. I don’t remember being in a lot of pain. I went home after a couple of days and then returned to the hospital in Seattle a few days later so they could check and make sure I was healing properly.

To tell you the truth, I did not feel much improvement right away. The seizures were a bit less intense and painful, but the frequency was still the same.

Gradually, things got better. I kept going back to see my epileptologist every six months and he would adjust the frequencies on the RNS System at each visit. After every appointment, I noticed that the seizures would be shorter and less intense.

In 2013, I needed to get the neurostimulator of the RNS System replaced for the second time. I was terrified that this change might somehow disrupt all the improvements I had seen, but my doctor assured me that this would not affect the programming of the device. In 2014, after one of the adjustments from my doctor, the seizures stopped completely. In fact, I have been seizure-free for about 4 years now.

For the first year that I was seizure-free, I was happy, but not completely happy. In the back of my mind, I worried that the seizures might come back so I didn’t want to get my hopes up too much.

Finally, after a couple years of not having any seizures, I got my driver’s license at age 27. That was really the landmark moment for me. I was totally over the moon. As a teenager, I had always hoped I might get my license someday, but I never really expected that it would happen. So it was surreal to actually hold the license in my hands.

The license meant everything to me. I had the freedom to drive myself wherever I needed to go instead of depending on my mother or the bus system. In fact, my mother is now making up for lost time by asking me to pick up groceries at the store or drive her around. I think initially she worried about me driving on my own, but now she just worries about me getting a speeding ticket!

Since I got the RNS System, I’ve pushed ahead with my academic studies. I graduated from Skagit Valley community college with an Associate Degree and was then admitted to Western Washington University, where I am currently in the last year of working towards my bachelor’s in Human Services with an emphasis on Early Childhood Education and Development. Getting accepted at the university was one of my proudest accomplishments. Between the seizures and side-effects from the medicines, I had a tough time academically in high school and some of my teachers expressed their skepticism that I would ever amount to anything. I was determined to study extra hard and prove them wrong. In fact, I ended up graduating from Skagit Valley with honors and was invited to join the Phi Beta Kappa honor society.

At Western Washington, my emphasis is studying child counseling and psychology. I hope to pursue a master’s degree in psychology and eventually work as a school counselor to be an advocate for children who might not be able to speak up for themselves. My goal is to give them hope and help them through tough times, because I know what that’s like.

Outside of school, it’s much easier for me to socialize now that I worry much less about having a seizure. I’ve become a big people person. I’ve started joining social clubs at my university and traveling.

I flew by myself to visit a friend in Texas and took the train on my own to visit my sister in southern Washington. That was pretty cool. Back when I had seizures all the time, I didn’t think I would ever be able to travel on my own.

Basically, the RNS System has totally changed my life. Before, I let epilepsy define who I was. Now I sometimes even forget that I have epilepsy. It’s still a part of who I am, but it does not have to define me anymore.

Have questions, or want to know more?

This represents the experience of individual(s) who have used the RNS System.  Individual results will vary.