By Hannah Robinson
When Tracy Sasser was a young girl, around the age of 5, she had a “trick” that others would often point out: She could flutter her eyelids abnormally fast. She was often asked how she was able to flutter them so quickly, but the truth was, she didn’t know. In fact, most of the time she didn’t even know it was happening.
In high school, she noticed that, in addition to blinking quickly, she would sometimes zone out or not remember what she had just said. It wasn’t until college that she had her first grand mal seizure. She assumed she had passed out for a short amount of time because of sleep deprivation or dehydration, but in reality, 40 minutes had slipped by and something much more serious was going on.
This happened eight more times before the morning of her brother’s wedding when she had a grand mal seizure that resulted in her having a large knot on her head that was “a real challenge for the makeup artist that day,” she says. It was at this point that family members became aware of her symptoms. Some members in the medical field suggested to her that it sounded like seizures and encouraged her to seek care.
At the time, she was working at a smaller hospital in cardiology. She visited the hospital’s neurologist, who performed an EEG (electroencephalogram) and MRI (magnetic resonance imaging) to determine the cause of her seizures. While she was working, he pulled her into a separate room where he showed her the results of her EEG. From there, he told her the shocking news that she had epilepsy. She distinctly remembers allowing herself a five-minute breakdown before having to head back to work.
They started her on medication right away. The diagnosis meant she could no longer drive, but she was still on call. She relied on her family members to give her rides at random hours, and they were always there for her. Shortly after her diagnosis, she moved to Columbia and began working at Boone Health as a cardiovascular sonographer in December of 2014. She quickly found a caring community there. She says: “Everyone is like a family. You can walk through the halls and someone will always say hi, wave, or smile. You don’t always get that at big hospitals.”
After moving, she started seeing neurologist Miles Goble, MD. They performed a sleep-deprived EEG to purposefully encourage seizure activity. This showed that she was having seizure activity throughout the night despite her medication, and also explained to her why she felt so tired all the time. Tracy would learn that sleep deprivation was one of her triggers for a grand mal seizure, along with stress, alcohol, and hormonal changes. After this EEG, they upped her medication and years passed without a seizure (2014 to 2016). It seemed that everything was going great, so she and her husband, Scott, decided to start a family. They were blessed with a baby girl named Savannah in October of 2017. Thanks to the second EEG at Boone, they knew sleep deprivation would be a problem. Her husband helped prevent this as much as he could by allowing her extra sleep and coordinating naps, but Tracy had a grand mal seizure six weeks after Savannah was born, on a Sunday. Scott called 911 and Tracy was treated at Boone, where they upped her medication again.
Her next grand mal would be in October of 2019, two weeks after her son Ethan was born. After this, her medication was continually increasing to try controlling the seizures. Dr. Goble then suggested Tracy go to MU Health Care to visit their neurologist specialist for a second opinion and to perform a video EEG. This required Tracy to stay in the hospital for a week, where they took her off her meds and made sure she was sleep-deprived to try to cause seizures. The goal was to see where in her brain the seizures were coming from. If they were focal seizures, coming from one part of the brain that they could locate, there was a possibility they could remove it. From the video EEG, they found out that her condition was worse than she thought, and she was having many small seizures without realizing it. One subtle symptom of her seizures was that the muscles in her leg twitch, which she previously thought was just a restless leg. They also found out her seizures were generalized, which meant surgery was not an option. With the severity of her symptoms, they decided they needed to put in a vagus nerve stimulator, or VNS, as soon as possible.
At this point, Tracy went back to Boone, where Terrance Ryan, MD performed the surgery. It was an outpatient surgery, so she was allowed to go home that same day.
The VNS is in her chest and a wire is wrapped around the vagus nerve and threaded up her neck. It sends impulses every five minutes in 30-second durations up to her brain automatically. She wears a magnet as a belt clip which, when swiped over her chest, will double the strength of the impulses. This is useful if she feels a seizure coming on, and she has taught those around her how to use it just in case. It automatically increases in power when there’s an increase in heart rate, so she is sure to turn it off during a run.
Since the surgery, Tracy does not feel as nervous about everyday life anymore. She feels stronger, more energized, and more confident to do things alone. When asked if there’s anything she is particularly excited about, she mentioned that she and her husband haven’t gone to see a movie since 2015 because of the flashing lights. With the VNS, she feels hopeful they can go again soon!
As both a patient and employee at Boone, Tracy would recommend the hospital to anyone. She says it’s a place that genuinely cares about patients and communicates not only between departments but between hospitals as well to ensure you receive the best possible care. She hopes by sharing her story, she can raise awareness of the different ways epilepsy can present, as her subtle symptoms are the reason she went undiagnosed for so long. She also wants people to know that people with epilepsy can still go on and live normal lives, work normal jobs, and have a family. Epilepsy may make it hard sometimes, but with the right care team, anything is possible.