Marisa Kuchta has never let anything keep her down. Not as a kid, not as a college student, not as a young adult out to make her way in the world. And that’s really saying something because since she was 11, this 27-year-old Pewaukee resident has struggled with epilepsy. Concussions, cuts and bruises have been constant in her life.
“I’ve burned myself with my curling iron, broken a tooth and almost drowned because of the seizures,” Marisa said. But today, thanks to treatment at the Froedtert & the Medical College of Wisconsin Comprehensive Epilepsy Center at Froedtert Hospital, she is experiencing a much better quality of life.
“Now,” she said, “I don't get up in the morning and worry about falling down.”
Growing Up With Seizures and Epilepsy
As a student at Pilgrim Park Middle School in Elm Grove, Marisa enjoyed the support of her classmates while she and her physicians negotiated her condition.
“If I had a seizure, everybody would know, but nobody treated me differently,” she said. “And I said to myself, this isn’t going to rule my life. I absolutely adored soccer and sometimes I would have seizures on the soccer field. I would get taken out for a little bit, but I would rebound pretty fast. I would say, ‘Coach! Coach! Put me back in.’"
Doctors treated Marisa with various medications but the seizures only increased. By high school, she had them almost every day. An adjustment in her medication regimen provided some relief, and after graduation, she headed off to the University of Wisconsin-Whitewater to study marketing and advertising.
“Stress and sleep deprivation are big triggers for me and that’s pretty much what college is all about,” she said. Unfortunately, Marisa’s condition forced her to take a medical leave her first year. She returned, but had to withdraw once again. Happily, she landed a marketing job at Boston Store and things started looking up.
“I was on a hot streak, without any seizures and a great job,” she said. “I felt like I was on top of the world. Then, I had a seizure at the office and conked my head.”
Finding the Right Epilepsy Treatment
Determined to fight back, Marisa had a vagus nerve stimulator procedure (VNS), in which a pacemaker-like device implanted in the chest sends an intermittent signal to an electrode connected to the vagus nerve, located in the neck. When people realize a seizure is about to occur, they use a magnet to activate the stimulator and stop the seizure. A palliative measure, not a cure, the VNS failed to significantly improve her life. Persistent as ever, Marisa searched for information on Froedtert.com, which led her to pursue care at the Froedtert & MCW health network.
“After about a week of prayer — God is a big part of my life," she said, "I made an appointment.”
When modifications to the roster of the seven medications Marisa was taking to control her seizures failed to make much of a difference, she was offered a new option: a responsive neurostimulator (RNS), which is placed in the skull with electrodes directed to the area where the seizures seem to begin.
RNS is designed for patients with focal onset seizures — meaning there’s a distinct area where the seizures begin. Marisa did not fall exactly into that category because her seizures were more generalized. A lot of the scientific information suggests that deep brain structures like the thalamus might be one of the onset areas for seizures, the RNS was implanted, with the thalamus as the target, to treat the whole brain. This is a novel use of RNS and probably hasn’t been done more than a few times in the U.S.
Marisa uses a handheld monitor to transmit recordings of her brain’s electrical activity over the internet for her care team to review and analyze.
It took about a year to find the optimal settings — the parameters for detecting a seizure onset and scrambling information during the seizure to stop it from progressing. Then, her seizure frequency dropped by about 80%.
Moving Forward
Marisa credits her positive attitude to the support she receives from her family and her faith. “I am grateful every day,” she said. Always athletic, she is now a fitness specialist and personal trainer.
“I’ve spent so many years as a patient and now I get to help other people,” Marisa said. “It’s really awesome how this is coming full circle for me."
