Troy Lindberg wants his life back.
Diagnosed with epilepsy in his teens, Lindberg went for decades without a seizure after undergoing brain surgery when he was 19 years old. But three years ago, the frequent seizures unexpectedly returned.
In an average week, Lindberg, 48, may suffer dozens of seizures; some last only 10-15 seconds, while others stretch on for several minutes. Because of them, he cannot work, cannot drive and has difficulty supporting his family.
Medications to curb the seizures only work for a short time, and the surgical removal of portions of Lindberg’s brain to treat his epilepsy—similar to the surgery Lindberg underwent as a teenager—is no longer an option. Out of potential solutions, the longtime epilepsy patient has put his hope in a remarkable new device that is being rolled out for the first time in Minnesota.
“The doctors say this is my last chance to get things under control,” Lindberg said. “If it doesn’t work, my whole world’s going to be upside down.”
A “Revolutionary” New Tool
Called the NeuroPace® RNS® System, the device uses electrodes implanted in the brain to monitor brain wave activity and detect seizures before they take hold in the brain. The device then administers electric stimulation to the brain to stop the seizure and restore normal brain function.
It is the most advanced FDA-approved neurostimulation device available in Minnesota; other, similar brain stimulation devices are under development but have not been approved by the FDA.
“I think it’s exciting from many perspectives,” said Neurologist Thaddeus Walczak, MD, the director of University of Minnesota Health MINCEP Epilepsy Care, a national Level 4 Epilepsy Center with an international reputation for comprehensive epilepsy care. MINCEP is the first epilepsy treatment center in Minnesota to offer the RNS.
Epilepsy is a common neurological condition, affecting roughly 65 million people worldwide. Epilepsy patients suffer from disturbances in the normal electrical function of the brain that cause seizures. Currently, there is no cure for epilepsy.
“It will allow us to help a lot of patients who didn’t benefit from surgical treatment in the past,” Walczak said. Traditional epilepsy surgery is not an option when seizures originate in more than one area of the brain or start in areas critical to normal function, Walczak said. The RNS can help in these situations.
“Because it continuously records and observes the brain wave patterns—including activity that occurs leading up to and during a seizure, we will have a much better understanding of how many seizures people have, and what kinds of seizures they suffer from. In that sense, it’s revolutionary.”
Walczak hopes that improvements in the device will eventually allow accurate and precise on-demand treatment for seizures.
“Ultimately, the goal of this is to reduce the need for medications. Using medications to treat seizures requires continuously treating the brain to prevent something that only occurs occasionally. It would be really nice to treat the brain only when it needs to be treated,” Walczak said.
“I don’t want to live the rest of my life like this”
Lindberg, a South Dakota resident, traveled to Minneapolis in January so surgeons could implant the RNS device in his skull. For the last month, the tool has been recording Lindberg’s brain wave activity.
Physicians will use that stored data to identify the abnormal brain wave patterns leading up to a seizure. Once the device is programmed and activated, it will automatically administer stimulation whenever those patterns are detected in Lindberg’s brain.
Lindberg, who sought out MINCEP because of the advanced care offered by the program, is the first patient to receive this device outside of a clinical trial in Minnesota.
“We tried to tweak his medication, and we tried many different medications,” said Epileptologist Zhiyi Sha, MD, PhD. “We exhausted our choices, and he was still having a significant number of seizures. It was very hard for him and his family.”
“At that time, I said, ‘I’ll try anything,’ because I was at the end of my rope, and nothing was working,” Lindberg said.
Early in March, Lindberg will travel once more to University of Minnesota Medical Center in Minneapolis, where his care team will program and activate the RNS to begin issuing electrical stimulation.
Lindberg hopes the RNS will allow him to get back to work, return to school to complete his business management degree and help his family.
“I’m excited for it, because I’m hoping that I can go get my life back on track and start doing my share financially,” he said. “I don’t want to live the rest of my life like this, where I have to be counting on someone to take care of me.”