Chrissy’s story

By January 24, 2018Patient, Written Stories

My name is Christine. I live just north of Denver, Colorado with my husband and two small children.

I got married in 1998 and moved to Colorado Springs with my husband, who was in the air force at the time. I finished my undergraduate degree there. I’ve traveled a lot, but I’ve never lived outside of Colorado except for five years in Laramie, Wyoming when I was in graduate school getting my PhD in Experimental Psychology.

I had my first known seizure when I was 8 years old. I don’t remember falling, but I do recall waking up and finding myself on the kitchen floor with my dad holding me and telling me repeatedly that everything would be alright. Seizures were common in my family but my dad, paternal grandmother and aunts hadn’t had one for decades.

Whenever I had a tonic-clonic seizure, I would feel like I was sinking into the floor. Initially I was scared and I didn’t fully realize what was happening. Afterwards, it would take hours for me to feel OK again. This process became easier as I got older and I seemed to grow out of having full tonic-clonic seizures often.

I started taking medication when I was 8 or 9 years old and everything seemed to be under control as long as I took my medicine. My father was concerned that people might treat me differently if they knew I had seizures, so I didn’t tell anyone at school. However, the secret came out when I missed my medication one time and had a seizure during a swim team practice and my coach had to pull me out of the pool. After that, I had a meeting with the team where I told them about my seizures and openly answered questions. They were all amazingly supportive.

Now I feel like it’s important to talk about epilepsy and work to destigmatize it. People who know me understand that there’s nothing scary about me – unless you try to take away my coffee!

When I was approximately 21, I found out that my seizures were caused by tuberous sclerosis complex (TSC), a genetic disorder that causes benign tumors. TSC can lead to tubers in a variety of organs, including the kidneys and eyes, but in my case, it only affects my brain.

At the time, I thought that as long as I didn’t miss my meds, my seizures were controlled. However, I was probably still having unrecognized partial seizures. I would drift off sometimes and be unable to respond to questions. When I did try to talk, I would often sound like a broken record, getting stuck on one word, unable to get over the bump.

When I was my mid-30s, I started seeing a new neurologist that specialized in epilepsy (an epileptologist). She verified these ‘broken record’ episodes were partial seizures and prescribed two more medications.

Over time, despite the medications, the partial seizures got worse. Instead of just zoning out or losing the ability to speak, I was now blacking out, passing out and possibly falling (although not full tonic-clonic). It became problematic and dangerous.

This new epileptologist and I discussed both the RNS and VNS options. To be honest, the VNS scared me more. I had taken a neuropsychology class and probably knew just enough brain anatomy to be annoying, but the idea of going up the vagus nerve did not appeal to me. I was more interested in the RNS System, but I was still scared about having brain surgery, but I had finally recognized that the drugs alone would not solve the problem.

Meanwhile, I kept doing research on the RNS System. As I read studies published in medical journals, I became more confident in the research behind the device and decided to have the RNS System implanted.

Nevertheless, I was still terrified the night before the surgery – but I was terrified with great hope. I knew something had to change. Immediately before the surgery, I was having two or three blackouts per week. I wanted my freedom again and the ability to feel comfortable staying home alone with my children.

The surgery to implant the RNS System went really well. Actually, it was much easier than I had ever imagined.

I was in the hospital for nine days total. First, I had to do a week long brain mapping with an internal EEG to pinpoint the exact locations where my seizures originated. Eight days later, I had surgery again to implant the RNS System and then I went home the next day.

After the surgery, I went back immediately to my normal routine. I did not even use the pain medications that I had been given. I didn’t need any painkillers beyond a little Tylenol.

I’m a data geek, so I was amazed when my doctor started getting data back from the RNS System showing that it was detecting around 2,000 non-clinical seizure onsets per day. These did not develop into the partial seizures that caused my blackouts, but since they started right over my brain’s language center, they did affect my speech ability.

Over time, my neurologist has reprogrammed my RNS System so that it does a better job of interfering with and stopping my hidden, non-clinical seizures. By my fourth follow-up appointment, this non-clinical seizure activity had dropped by approximately 90%.

I have never let epilepsy stop me from pursuing my goals. I have a PhD degree. I have a high-functioning job as an online university instructor teaching classes in criminal justice for the University of Wyoming and the University of Colorado, Denver. Before that, I worked as a statistical analyst for the State of Colorado, Division of Criminal Justice.

Even though epilepsy has not stopped me, it has impacted my life. There were times when I was giving a lecture, participating in a business meeting or even defending my dissertation – where I simply could not get my words out. I wasn’t nervous and I knew what I wanted to say, but I couldn’t speak.

When I learned how many non-clinical seizures I had been having, that was a true epiphany moment for me. I finally realized how much epilepsy had been affecting my life all these years.

The data gave me more awareness of my situation, and that awareness can provide a sense of control.

I hardly ever have those broken-record episodes anymore. While I do still have blackouts, they happen much less frequently these days.

Before I got the RNS System, I was blacking out two or three times a week. Now they probably only happen a couple of times a month.

The blackouts are less severe now too. Before, I would often black out and fall down. Now, even if I black out, I can usually keep myself from falling. Or I might not even fully black out, but just zone out and stare for a second.

Even though I’m still not driving, I feel better going out and being dropped off to do things by myself. I have gotten to the point where I feel comfortable staying home alone with my children.

I have seen the charts and data from my RNS System showing how seizure detections have continued to decline from one appointment to the next. My family and I are excited that the RNS System is doing exactly what we had hoped it would do, and that it’s getting better over time.

Have questions, or want to know more?

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