Woman first in Illinois to receive device for epileptic seizures
By Nancy Di Fiore
For Amanda Mullen, being seizure-free was merely a dream. For all of her 19 years, epilepsy had interfered with Mullen’s day-to-day activities, including her studies. At night, she slept with a monitor nearby to alert her family to the frequent seizures that disrupt her sleep.
“Hearing her seizures over the monitor, and getting to her before she turns over into her pillow, was a huge safety risk and a huge stress on me, and the rest of the family,” said her mother, Julie Edwards.
Mullen’s options appeared to be few. She is one of the nearly 400,000 Americans whose epileptic seizures can’t be controlled with medication and who are not candidates for a type of brain resection surgery.
Device offers hope
But a new surgical implant recently approved by the U.S. Food and Drug Administration offered Mullen new hope where other treatments had failed her. The device, called NeuroPace, uses responsive, or “on-demand” direct stimulation to detect abnormal electrical activity in the brain and delivers small amounts of electrical stimulation to suppress seizures before they begin.
On Aug. 7, doctors at Rush University Medical Center implanted the NeuroPace in Mullen’s brain, making her the first patient in Illinois to receive the device since the FDA approval.
She is still recovering from the surgery, and while not yet past all of the difficulties, her doctor is hopeful. “It’s a work in progress,” said Marvin Rossi, MD, an assistant professor of neurology at the Rush Epilepsy Center, who helped lead the only clinical trial for NeuroPace in Illinois.
“It’s something that has to be monitored over the next six to 12 months. That’s when we will know if this treatment was effective," he said. "I think it is realistic that she will do really well and I’m hopeful that she will do dramatically better with this therapy.”
Improved quality of life
Rossi said several Rush patients who received the implant during the clinical trial are now able to drive, and have lowered or even eliminated their medications. “Not long ago, it was highly unlikely that these patients would ever be free of their seizures,” he said. “There is no doubt that quality of life of the majority of our implanted patients is significantly improved.”
Surgeons implant the device under the scalp and connected to electrodes placed within the brain where the seizures originate (called the seizure focus). A programmed computer chip in the skull communicates with the system to record data and to help regulate responsive stimulation.
Using this technology, patients can send a daily electrocorticogram, a recording of electrical activity acquired from the surface of the brain, to their doctors by using a special wand and laptop to upload the data to the Internet.
After a seizure, doctors can use that data to trace the path of the incident and adjust the electrode lead stimulation accordingly.
Rush developed an electrode placement model that allows doctors to maximize the device’s ability to influence a patient’s epileptic circuitry before they surgically place the two leads.
“Before the NeuroPace device, Amanda had no hope of swimming, driving, using the stairs without supervision, or even being home alone while I run errands,” her mother said. “Already, her headaches have decreased and her mood has been so much better. She is returning to the happy girl she really is inside and for that alone I am beyond grateful.”
Mullen currently attends classes at Elgin Community College in a program designed to increase independence. “I knew right away I wanted it,” she said of the NeuroPace stimulator. “To have a chance to eliminate my seizures when nothing else has been able to, gave me so much hope for the future. I am so excited about having a chance to live a normal life.”