January 31, 2024
As a busy mom to 5-year-old daughter Natalia, Mallory Contreras has plenty on her mind. But thanks to a special device implanted in her brain, she has one less thing to worry about: having another seizure.
Mallory lives with epilepsy. Her seizures started when she was in 5th grade and continued through adulthood. Prior to her epilepsy treatment, Mallory had 2 to 3 seizures a month, sometimes more.
“Seizure is the main symptom of epilepsy,” says Patrick Landazuri, MD, an epileptologist at The University of Kansas Health System. “Epilepsy is an electrical disease of the brain, and a seizure is essentially just a misfire of electrical brain activity.”
Mallory’s seizures had a significant impact on her life. In school, she lost friends. She couldn’t drive and had to rely on her younger brother for transportation. She was let go from her job because she had a seizure at work. And despite being an athlete, she was forced to quit sports because exercise triggered her epilepsy symptoms.
“It was very hard,” Mallory says.
When epilepsy medicine isn’t enough
Medicine is often the first option for people like Mallory and is considered the gold standard in epilepsy treatment. These medicines are called antiseizure medication, or AEDs, and they are used to help prevent seizures. There are currently between 30 to 40 AEDs available.
For most people living with epilepsy, medicine can help control epilepsy symptoms. About 70% of people who take AEDs will be seizure-free. But the remaining 30% of people, like Mallory, have what’s called intractable epilepsy or drug-resistant epilepsy. Intractable epilepsy means that a person’s seizures don’t get better after taking medicine.
“The definition of [intractable] epilepsy is failing 2 medications,” Dr. Landazuri says. “And if you fail 3 medications, your chance of becoming seizure-free with medication alone is less than 1%.”
Innovation in epilepsy care
When medicine wasn’t successful, Mallory’s care team referred her to The University of Kansas Health System’s Level 4 Comprehensive Epilepsy Center. It was here, after thorough imaging and evaluation, her care team recommended epilepsy surgery. Specifically, they recommended a small, implantable device called a responsive neurostimulator, or RNS.
Mallory’s epileptologist, Utku Uysal, MD, explains, “We noticed that she had seizures occurring frequently from both sides of the brain. If we did a resection of the brain [in which a portion of brain tissue is removed], Mallory would most likely continue having seizures. For this reason, RNS was the best treatment option.”
“You can think of it as a defibrillator for the brain,” says Dr. Landazuri.
The RNS device is about the size of a keychain. It’s implanted in the back of the head under the skin and is connected to wires, or electrodes. These wires read brainwaves and search for unusual electrical activity, or signs of seizure. If a possible seizure is found, the RNS sends a jolt of electricity to certain parts of the brain. This is meant to stop seizures before they happen, and the patient will not feel the stimulation.
The path to seizure freedom
Mallory had RNS surgery in 2020. Once implanted, the RNS started recording Mallory’s brain activity. This information was sent to her neurology care team who studied Mallory’s brainwave patterns. Knowing her unique seizure signature allowed the care team to adjust the settings on the RNS device for better results.
“We mold [the RNS] to the patient and change how much current is delivered when she has a seizure,” Dr. Landazuri says. “It’s very individualized.”
As the RNS got better at identifying Mallory’s seizures, it was able to stop more seizures sooner, and the number of seizures Mallory had decreased over time. Today, Mallory has been seizure-free for 1 year.
“It’s a totally different, new life altogether,” Mallory says. “I can be alone now – people don’t have to worry about me or what I’m doing or if I’m OK. It’s nice to feel normal.”