His journey of taking back his life with Closed-Loop Brain Stimulation for Epilepsy & Seizure Control
It was an air trauma nurse who found Mike. She was driving to work late at night when she saw taillights coming from an irrigation canal off the side of a rural road in northern California. After working a long day as a general contractor, Mike was driving home in his work van when he had a seizure and drove off the road into the canal. Once in the ER, the doctor told Mike that he had a seizure, he was no longer able to drive, and they treated him for a possible heart condition.
From that point forward, Mike’s seizures became more frequent, having at least one every week. Those that he noticed were strong seizures resulting in physical injuries like dislocated joints or broken bones. He was prescribed a slew of medications but nothing seemed to work. The seizures kept coming. One of his general contracting clients suggested that he go to the Mayo Clinic in Rochester, MN. On the flight from Redding, CA to Rochester, MN he had a seizure and woke up in a Denver hospital. He then tried an Amtrak train and bus to get to Rochester but had a seizure while in transit too. Finally, he found a friend who would drive him to Rochester. There, he was diagnosed with epilepsy and began treatments at the Mayo Clinic.
Mike found himself jobless, broke, and divorced two years after diagnosis at the Mayo Clinic. His life now revolved around epilepsy. He moved to Phoenix to continue receiving care through the Mayo Clinic’s satellite location. Despite the treatments, Mike was still having grand mal seizures with loss of consciousness and violent muscle contractions. The seizure frequency was now every 3–6 days. He began to withdrawal from society. Mike was attempting a variety of treatments from vagus nerve stimulation to brain resection. Still, it was a roller coaster of promising treatments that only led to disappointment from poor results. “For years, the doctors did not believe me when I showed them my seizure diaries,” Mike says. “It was like I was doing something wrong to spark the seizures.” Living on disability assistance, Mike had to do something to change his life path, so he enrolled in a community college.
One of his doctors suggested that he participate in a clinical study of the NeuroPace RNS System for refractory focal epilepsy. The RNS neurostimulator is a device similar to a heart pacemaker but for the brain. Mike’s RNS System monitors his brain activity 24 hours a day, and recognizes & responds to his unique brain patterns to stop his seizures before they start. It also records Mike’s brain activity, which provided insights that enabled his doctors to optimize his epilepsy care. After the procedure and his recovery, Mike was back attending college classes.
As part of the RNS System clinical study, he was required to keep a seizure diary. Reviewing his diary entries with the research team, they would compare his documented seizures to the sensing activity from the RNS System. The data would match. “For years, I tried to explain all the seizures I was having. Now with this device, the data validated it,” he said. For Mike, that was his eureka moment when he felt the data gave him a voice. As they studied the seizure diaries with the sensing and stimulating data, they found triggers that would spark seizures like heat stress or a high carbohydrate intake. These were behavioral items that Mike could control, and did, by adapting life activities. He went from experiencing seizures every 3–6 days to having them every 2–3 months. Mike felt more in control, that he could get his life back. He started feeling “normal” again.
Still using the RNS System, Mike earned his Bachelor’s and Master’s degrees in social work. He graduated from both ASU & the Mayo Clinic School of Health Sciences. While working on his degrees, Mike started giving back by working as a Mayo Clinic Social Worker and visiting other people with epilepsy at the Mayo Clinic-Phoenix hospital. Eventually, the pages of Mike’s seizure diary were blank and he realized he had become seizure-free. He later moved to Portland, Oregon, found a job, and returned to being social. Putting his passion to work, Mike is now a Patient Educator for NeuroPace working with others living with epilepsy.
Learn more about the RNS device and Neuropace here: https://www.neuropace.com/the-rns-system/