Brette Garnatz, 28, had outpatient surgery in 2009 and again last year for placement of a device that brought her frequent epileptic seizures and debilitating side effects from medications to an end.
Sometimes, Brette Garnatz tells people the scars on her neck were caused by a cougar attack.
“And some people believe it,” the 28-year-old Lakeside resident said with a grin.
In fact, the narrow scars were caused not by an animal but by a surgeon’s knife. Garnatz had outpatient surgery in 2009 and again last year for placement of a device that brought her frequent epileptic seizures and debilitating side effects from medications to an end.
Married to a teacher and about to begin nursing school at Lake Superior College, Garnatz is one of about 50 million people worldwide with epilepsy, a brain disease characterized by recurrent seizures.
But she is somewhat unusual in a couple of respects.
The risk of seizures is greatest between the ages of 1 and 20 and then increases after the age of 60, said Dr. Richard Kanoff, a child neurologist at Essentia Health who specializes in treating epilepsy in patients of all ages.
But Garnatz, who grew up in Menomonie, Wis., went through the first 20 years of her life without a hint of a seizure.
Also, the therapy that helps stabilize Garnatz’s nervous system, vagus nerve stimulation (VNS), has been used in a relatively small number of epilepsy patients. More than 70,000 patients have had the stimulation device implanted since it was approved in Europe in 1994 and in the United States in 1997, according to its manufacturer, Houston-based Cyberonics.
Moreover, it’s not always as effective as it has been in Garnatz’s case.
“Somewhere around 10-15 percent of patients may become seizure-free with VNS,” said Kanoff, Garnatz’s neurologist since she and her husband, Drew Garnatz, moved to Duluth in 2009.
Garnatz hasn’t had a seizure since October 2009, nine months after the device was implanted.
“I am very, very fortunate,” she said.
Fortune didn’t seem to be on Garnatz’s side when she started having seizures three years earlier. Then a junior studying community health education at the University of Wisconsin-La Crosse, she drove to school on a route that crossed the Mississippi River.
One day, though, she never made it to school. She found herself at a gas station with no idea how she had gotten there.
“I stopped, and I got out and called family that was close by and just stayed until I felt OK,” Garnatz said.
She wrote it off as being overly tired.
But a couple of weeks later, she called her mother after a class. Realizing something was wrong, her mother told her to meet her aunt — who worked at the school — by the university’s landmark clock tower.
“I don’t remember any of this,” Garnatz said. “I just remember being so confused, and not knowing what was going on.”
After a battery of tests, Garnatz was diagnosed with epilepsy.
‘Out of the blue’
The disease can be triggered by events, such as an injury or a stroke, Kanoff said. But it’s not unusual to have seizures with no identifiable cause.
That appeared to be the case with Garnatz. She played soccer when she was young, but she never suffered a head injury, she said.
“Brette is someone who started having seizures essentially out of the blue,” Kanoff said.
Garnatz was given a variety of medications, in various dosages and combinations, with no success. She was having seizures several times a week.
She was taking as many as seven drugs, and they were extracting their own toll.
“All of the medications made me very, very lethargic,” she said. “It was hard to go to class, hard to get out of bed, and my memory was just terrible.”
In the fall of 2007, Garnatz went to Mayo Clinic in Rochester, Minn., for further testing. Under the direction of the team at Mayo, Garnatz continued to try different combinations of medicines in 2008. She also was placed on a ketogenic diet, a high-fat, low-carbohydrate diet most often tried with young children.
Raising the threshold
“And they said, ‘OK, it’s time,’ ” Garnatz said. “ ‘Let’s bring up the topic of the vagus nerve stimulator.’ ”
The vagus nerve exits the brain and travels down the neck to the rest of the body, Kanoff explained. The stimulator, about the size of a small watch, essentially is a pacemaker for the brain. It’s normally planted in the patient’s left chest, and a wire is connected from it to the left vagus nerve.
The stimulator emits intermittent electrical impulses that travel up the vagus nerve to the brain, Kanoff said. The effect, at least in some patients, is that seizures are reduced or eliminated.
“The idea is, you raise what we call the ‘seizure threshold,’ ” Kanoff said. “That’s the brain’s own ability to prevent seizures. … People with epilepsy have a reduced seizure threshold. … But what VNS does is provide a rhythmical current to the brain that raises the seizure threshold.”
Garnatz knew that if the new treatment had any effect, it wouldn’t be immediate. Various settings were tried over time. The default setting, Kanoff said, is on for 30 seconds and off for five minutes. Eventually, Garnatz’s doctors settled on 20 seconds on and two minutes off, with a higher-than-standard frequency.
Support in Duluth
Meanwhile, the Garnatzes moved to Duluth in June 2009 after being married in May at the church camp where they met. They made sure to find a place on a bus route, because Brette wasn’t allowed to drive. She was delighted to learn that a neurologist who knew how to care for patients with VNS was available, and a surgeon was available when the device has to be replaced, as it did last year.
She was glad to discover an active chapter of the Epilepsy Foundation in Duluth, and she quickly became involved. She’s on the foundation’s board for Northeastern Minnesota, and she’s one of organization’s top volunteers, said Mary Giese, the group’s outreach coordinator.
“I didn’t have a support group when I was in La Crosse,” Garnatz said. “You can have family and friends, but it’s so important to have someone else who has it.”
One of the people Garnatz met was a young boy with epilepsy and autism. The boy had a VNS implant.
Giese was watching as the two got together for the first time.
“She immediately got down to his level and showed him the scar that she has on her neck,” Giese said. “And she touched his chest where the implant was and had him touch her chest where the implant was. His eyes got big. … He caught on right away.”
Although seizure-free for four years, Garnatz still keeps with her a magnet that can be placed over the implant to jump-start it in the event she feels she may be starting to have a seizure. The magnet also can be held in place to keep the VNS from triggering. That’s to counter the device’s one side effect — a hoarse-sounding throat when it’s on. She used it, for example, while singing alto in the Duluth Superior Symphony Orchestra Chorus.
She’s driving again and excited about studying to be a nurse. It’s a career she was inspired to take up because of the care she received from Mayo Clinic nurses, she said.
Although she realizes it doesn’t work for everyone, Garnatz attributes vagus nerve stimulation therapy for a vast improvement in her quality of life.
“One of the biggest things for me is I’m no longer a walking zombie,” she said. “It brings life back; it gives you energy. My memory is so much clearer. It’s amazing how much better it has been.”