North Dakota woman on leading edge of epilepsy research with implanted device
For the 50 million children and adults worldwide who live with epilepsy, the brain's electrical circuitry shorts out spontaneously. As many as one-third of patients, 1 million in the U.S. alone, find no relief with existing medications and must explore more invasive options.
Sheri Finstad is one of those patients. Five years ago, she decided to take a chance on a new device. Her decision puts her on the leading edge of the next generation of epilepsy treatments.
Sheri's epilepsy began as a series of violent, shaking seizures in the night. Draining. Scary. But tolerable.
As the seizures began creeping into the daylight, Sheri began to feel her life slip through her fingers.
"I increasingly knew it wasn't safe for me to be alone," Sheri says. "In my work as a child protection social worker, I was often in potentially unsafe places or environments, so I couldn't do that anymore."
She stopped driving. She changed jobs. She stopped dreaming of being a mother one day. Even holding a baby sent a shock of dread down her spine. What if she had a seizure? What if she dropped the child?
Sheri's tipping point happened during a family vacation in northern Minnesota when she had a grand mal seizure — the kind most people picture when they think about a seizure. Her eyes rolled into the back of her head, she shook violently and she lost consciousness. The seizure's intensity stunned Sheri and her family.
Sheri spent the next decade organizing her life around the seizures: There was a menu of medications, a ketogenic diet of low-carb, high-fat foods and a surgery to implant a vagus nerve stimulator.
But as time passed, the severity and frequency of Sheri's seizures continued to escalate. Then, in October 2013, as Sheri reached for a file in a drawer at work, she had another grand mal seizure.
"I ended up falling, losing consciousness and hurting myself — thankfully I had colleagues who were there to help immediately."
Ready for a better treatment plan, she spent the next week in Mayo Clinic's Epilepsy Monitoring Unit in Rochester, Minnesota, under evaluation.
Sheri can't forget the follow-up call from her care team. "I was with my mom headed to the drugstore to pick up my anti-seizure medication," Sheri recalls. "I took the call and started crying and couldn't stop."
Her team suggested she might be a candidate for epilepsy surgery, but this would require she come back to implant intracranial electrodes directly into her brain to record electrical activity. This procedure was necessary to determine if removing part of the brain, known as a resection surgery, was an option. The decision was not one Sheri or her Mayo Clinic care team took lightly, but she was running out of options.
"We tried it all," Sheri says. But the seizures were getting worse.
Gregory A. Worrell, M.D., Ph.D., and Sheri Finstad carefully considered the options available before making the decision to implant a medical device that monitors her drug-resistant epileptic seizures.
In January 2014, Sheri and her husband, Chris, navigated the icy highways from Fargo, North Dakota, to Rochester, Minnesota, for the operation.
Sheri's craniotomy surgery, which created an opening in the skull to implant electrodes and record seizures, revealed that she has not one, but two, seizure epicenters. One is located in her hippocampus, the critical area where memories are housed — so additional surgery was not an option for Sheri.
Sheri, voice almost a whisper, remembers her feeling of hopeless exasperation after the craniotomy surgery, "Ugh, what now?"
Almost 1 million patients with epilepsy are asking the same questions — "Ugh, what now?" To find an answer, researchers need to understand more about the structure and function of the brain and apply that to what's happening in the brain during a seizure.
"A seizure only lasts a minute or two," Gregory A. Worrell, M.D., Ph.D., explains. "So for more than 99.9 percent of the time, you're normal. What we're trying to figure out is, 'What's unique about those couple of minutes?' "
A Mayo Clinic team of neurologists, including Matt Stead, M.D., Ph.D.; Jamie J. Van Gompel, M.D.; Bryan T. Klassen, M.D.; and Mark A. Benscoter, Ph.D.; is pioneering trials to refine existing treatments and devices for patients with epilepsy.
One of these experimental devices is called the Activa PC+S. Studied through a collaboration between Mayo Clinic and medical device company Medtronic, Activa PC+S does two things: It can analyze brain activity patterns to detect seizures and in the future may be able to detect seizures before they happen and use that information to deliver an electrical charge to stop them.
There are devices currently on the market that deliver an electrical stimulation for seizures, but Activa PC+S and its next-generation cousin RC+S will allow physicians to track a patient's brain activity and download it to a server when the patient arrives back at Mayo for checkups.
Sheri's earlier evaluation revealed she was a candidate for just such a device.
Chris and Sheri Finstad are looking toward a brighter future, including potentially starting a family.
In October 2014, surgeons implanted the Activa PC+S coupled to two electrodes deep into Sheri's brain with wires traveling under the skin to a battery pack the size of a deck of cards implanted just below her collarbone.
"We can see exactly what our stimulation does to the ongoing activity in the brain," Dr. Stead says. "This will allow us to hopefully understand better what patterns and types of stimulation are most likely to suppress the patient's propensity toward seizures."
Sheri is one of five people with drug-resistant epilepsy to participate in the trial. She still has seizures, but over the last two years there has been a decrease in frequency and intensity, including two three-month stretches where she was seizure-free.
"It amazes me knowing I'm helping the future of medicine," she says. "Knowing that being a part of this medical research is helping the medical community, helping others — it's wonderful."
With the implant, Sheri can be in a room by herself. She's thriving as a social worker again. With her renewed confidence, she can hold a baby without fear. And she and Chris are thinking about a family of their own.
"It's something I haven't even been able to dream about for a long time," she says. "I'm on cloud nine."
Unpredictability. It's what makes seizures so difficult to manage.
However, Mayo Clinic neurologists are working to slow or halt the uncertainty by developing a forecasting device that helps predict seizures.
The device combines electrical activity data recorded by electrodes implanted in the brain with patient history data to alert the user, say on his or her cellphone, of a possible seizure before it happens.
If a person has had an irregular electrical pattern overnight or heightened electrical activity in an area of the brain, the user receives a "storm" alert.
The person can use this information to choose to stay home or to call a friend. When the danger passes, the user receives another update. The device is still in early testing.
Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing. This article was originally featured on the philanthropic site "You Are...the campaign for Mayo Clinic."
Visit Mayo Clinic's clinical trials website for information on some of the currently available trials for people with epilepsy and other conditions.
Read "The next generation of epilepsy treatment" - an article for medical professionals.
Watch a video about Mayo Clinic's Epilepsy Monitoring Unit.