SEATTLE — For 20 years Kaetlin Barrett of Anacortes has suffered from debilitating epilepsy. At age 3 she began experiencing incredibly painful seizures about five times a day which she describes as “a thousand needles stabbing my brain” or “hammers pounding my head.” Over the years, Barrett was held back in school, alienated by her peers and had to quit playing sports.
“My confidence was really affected,” Barrett said. “I was always judged and people called me a freak. I’d pray every night for some miracle.”
That miracle occurred when Barrett was 18 years old and learned about a new therapy being tested at Swedish Medical Center: the NeuroPace RNS System. A device was being implanted in patients’ brains to predict when they were going to have a seizure and stop it from happening.
Now, the U.S. Food & Drug Administration has approved the device so it might offer hope where other treatments have failed.
California-based NeuroPace began testing this new therapy in 2004 in epilepsy centers throughout the United States, including the Swedish Neuroscience Institution in Seattle. Today, Swedish is the only center in the Pacific Northwest approved to implant the device.
The NeuroPace RNS System is surgically placed in the brain to continuously monitor activity. When it detects abnormal brain activity, it responds by delivering electrical stimulation to normalize activity before the patient experiences a seizure.
Dr. Ryder Gwinn, medical director of the Swedish Neurosciences Institute Center for Neuromodulation and Functional Restoration, calls the new therapy “a big step forward.” He said the device has provided some of his most difficult patients with a new treatment option.
While there are more than 20 medications available to treat epilepsy, some patients cannot find any that will effectively control seizures, Gwinn said. The next step is often surgery, in which doctors identify which part of the brain is causing the seizure and remove it. This can lead to serious impairments in some cases and is not a viable option for all patients, he said.
Some epileptic patients are treated with a Vagus Nerve Stimulator, which attempts to controls seizures by sending out scheduled intervals of deep brain stimulation. Since it was approved in 1997, the device has decreased seizures in some patients but does not eliminate them entirely, Gwinn said.
The NeuroPace RNS System is different because the device includes electrodes that record brain activity, so it only stimulates the brain when a seizure is about to occur. Gwinn compared it to a heart defibrillator, which detects abnormal rhythms and shocks the heart to prevent cardiac arrest.
“It’s so much more elegant than what we’ve done to treat the brain in the past,” Gwinn said. “It’s better to treat with intermittent treatment rather than stimulating the brain all the time. It’s not constantly interrupting normal activity.”
Not only that, the NeuroPace device improves over time, Gwinn said. The more brain activity it records the better doctors can program it to detect a patient’s specific seizure patterns.
“Every patient has their own electric signal for a seizure,” Gwinn said. “We build the therapy around that patient’s signature fingerprint. We’re basically implanting a tool box.”
The NeuroPace device will also allow the medical community to learn more about epilepsy too by recording brain activity on an ongoing basis.
“It’s a window into brain activity that we’ve never had before in human existence,” Gwinn said. “Not only are we helping people now but we’re collecting a huge amount of information on how we can treat epilepsy in the future.”
Gwinn said none of his patients have experienced serious side effects from the RNS System, and some have even reported improved mood and memory.
Barrett had tried seven different medications and two surgeries before she asked to join the NeuroPace trial in 2008.
“I was really hopeful,” Barrett said. “I just wanted the seizures to stop. I wanted something to be done so i could be normal.”
Since having the device implanted, Barrett’s seizures have gone from averaging five-a-day to three per month. When the seizures do occur, she said they are less intense. At one time, Barrett went four months without a seizure.
Now 23, Barrett said she is much more confident and social. She’s currently in college and says it is easier to keep up with her schoolwork when she’s not “blacking out” during lectures. Barrett has even participated in sports like volleyball and soccer.
“It has been life changing,” Barrett said. “I couldn’t be happier. I have a lot more hope now. If it had kept going the way it was I don’t know if I would be here.”