Whitney Wilkinson’s Life-Changing Treatment for Epilepsy

MURRAY — At just 12 years old, Whitney Wilkinson was diagnosed with epilepsy. Since then, she has tried numerous medications and treatments, along with surgeries that didn’t always yield the best results. However, five years ago, she received a treatment that truly transformed her life and thankfully comes without any side effects.

Wilkinson, who is from Sandy, now has a brain implant known as a responsive neurostimulator. This device can detect many of her seizures almost instantly, sending out a pulse that she doesn’t even notice. “I literally have a computer in my brain that is monitoring my brain waves as we speak, 24/7,” she explains.

She’s among 100 individuals who have undergone this procedure provided by Intermountain Health. Remarkably, about once a week, Wilkinson gathers data from her device by holding a receiver to her head, which is then shared with her doctor.

“The device has really given me a greater degree of comfort in my daily life. I feel confident traveling alone, going to work, just living normally,” she shares. “It’s improved my quality of life, though it’s still not perfect, and I face some challenges. Overall, it’s been a fantastic treatment.”

Even though she still has some hurdles—like not being able to drive—Wilkinson feels she is leading a “much more normal life” with increasing confidence. As a marketing professor at Salt Lake Community College, she finds herself more engaged with her students and has a better interaction with her nieces and nephews.

Interestingly, she mentions that her doctors sometimes identify abnormal brain activity from the data that she herself hasn’t even noticed.

Dr. Jeffrey Bigelow, a neurologist from Intermountain Healthcare, mentions that patients are encouraged to upload information daily, especially after getting the implant, as it has limited storage. The information helps in optimizing the patient’s ongoing treatment.

A Developing Treatment

Dr. Bigelow points out that one in ten people experience seizures, and about a third of those develop epilepsy, which is characterized by frequent seizures. While two-thirds of patients manage their seizures effectively with medication, others require alternative treatments.

For years, options were limited to low-carb diets or medical cannabis. However, surgical treatments have progressed recently, and patients like Wilkinson are starting to reap the benefits. The neurostimulation device has been around since the 1990s, and a newer version was first utilized at Intermountain Healthcare in 2015. This year, they’re celebrating a significant milestone of helping 100 patients in the last decade—a feat that Dr. Bigelow emphasizes few institutions achieve. He hopes for wider approval of the device in the future, which could lead to many more patients exploring this treatment.

Currently, the device is only approved for focal epilepsy, targeting seizures that start in one or two specific areas. Insurance typically only covers the implant if medications have proven ineffective for the patient.

“We’re discovering that the responsive neurostimulation device has a broader patient base and can assist more individuals,” Dr. Bigelow remarks.

He encourages patients not to feel they need to drastically alter their lives just because medications aren’t successful. “Keep looking for other options; the field is advancing,” he advises.

“My goal as a physician is to work towards getting most patients seizure-free or well controlled, leading to a meaningful improvement in their lives,” he adds.

Treatment Process

Wilkinson’s surgery to insert the implant required a week-long hospital stay but was less invasive than two previous surgeries aimed at pinpointing her seizures and attempting to stop them, which had only worked temporarily.

After about ten years, patients will need to undergo another procedure to replace the device, which lasts about a decade on a single battery. Dr. Bigelow notes that this follow-up surgery usually requires only an overnight hospital stay instead of the week-long recovery of the initial placement.

The device itself is about two inches long, with two leads connected to the source of the seizures. It continually monitors the patient’s brain waves, intervening within seconds of a seizure’s onset.

In the beginning, doctors closely analyze the data gathered by the device to understand the seizure patterns before allowing it to stimulate right when it detects a seizure.

Dr. Bigelow states that, on average, the device can reduce seizures by about 75%, and they aim for fewer patients to settle for limited management of their symptoms. Research has shown that 75% of patients see a significant reduction in their seizures.

“I get excited when I find people who are good candidates for the implant,” he expresses. “Many go months without seizures, something that may never have happened before. Some patients can even return to driving and functioning normally. … Most patients experience some measurable benefits.”

This device is also contributing to expanding the medical understanding of epilepsy, aiding those who may not qualify for the implant. Researchers are learning to predict seizures more accurately and understand the brain’s responses to them and the device’s pulses.