Katherine Bergey was just 11 years old when she had her first epileptic seizure. It was a classic grand mal seizure with violent muscle contractions. Her family says she didn’t have any more seizures like that one. Instead, over time, she experienced smaller events that would happen while she slept involving strange motions and sounds.
That changed months later when Katherine, who had developed some unusual behavioral issues, tried to run onto a freeway and was hit by a vehicle. Police and rescue crews were able to get her to safety but at the hospital, she tore her clothes, kicked and hit the officers seemingly out of control. Katherine, now 26, remembers none of this. After some misdiagnosis and failed medications, her family recorded video of her having the strange seizures at night in her sleep and showed it to a pediatric neurologist who thought it might be a sleeping disorder. A second opinion from another pediatric neurologist in San Francisco finally determined she had epilepsy.
Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. In Katherine’s case, she suffers from a refractory form of the disorder, meaning she has multiple seizures despite being on more than one anti-epileptic medication. Only about a third of patients with epilepsy have the refractory form of the disorder.
“Katie’s seizures aren’t the classic type,” said her aunt, Kaye Schleich, of Fairfield, who has cared for Katherine since her mother died several years ago.
“She gets ticks and she gets the far off look and then turns her head to the right and sometimes there are arm movements,” she said. Katherine also doesn’t have big, body-shaking motions or clenched jaw, or biting of the tongue.
A change in insurance eventually brought her to NorthBay Healthcare where she connected with neurologist Ruby Ali, M.D., who began a process of modifying the medications Katherine was taking.
Dr. Ali, however, wanted more information on the source of Katherine’s seizures. Understanding where the seizures originate in the brain can help in determining the best course of treatment. She sent her to UC San Francisco for a detailed study of the brain, but the findings limited Katherine’s treatment options.
“Epilepsy can be debilitating for patients who have repeated and uncontrolled seizures… With this device, patients can regain some control over their lives and reduce the number and severity of their seizures.”
“Sometimes if we can pinpoint where the seizures originate, there are surgical options,” explained Dr. Ali. “In Katherine’s case there was not one single location where the seizures were starting and that means surgery is not an option.”
So Dr. Ali recommended the next best treatment option: vagus nerve stimulation (VNS), in which a tiny device is implanted in the patient and used to treat seizures through small, controlled electronic pulses.
The VNS consists of a pacemaker-like generator surgically implanted. Thin wires are threaded under the skin and woven around the vagus nerve in the neck. The VNS device sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to prevent seizures. It also gives automatic delivery of an extra dose of therapy when a rapid increase in the heart rate is detected, which may be associated with seizures. The electronic pulses may stop or shorten a seizure once it starts. In addition, the patient wears a magnet device on her wrist, which the patient or a caregiver can wave over the generator to manually deliver an additional dose of therapy in an effort to stop or shorten a seizure once it starts.
“The VNS therapy is another treatment option for one-third of patients and can help with quality of life,” said Dr. Ali.
Katherine’s VNS device was implanted in October of 2018 by neurosurgeon Edie Zusman, M.D., medical director for the NorthBay Center for Neuroscience.
“Epilepsy can be debilitating for patients who have repeated and uncontrolled seizures. They are unable to enjoy everyday activities out of fear of frequent seizures,” said Dr. Zusman. “With this device, patients can regain some control over their lives and reduce the number and severity of their seizures.”
Adjusting the device output is a lengthy process, as it has to be slowly increased over time, which is done with an electronic hand-held wand and an iPad during Katherine’s visits to the NorthBay Center for Neuroscience. “Turning it up all at once would not be good for the patient,” said Dr. Ali. “It is a very gradual process and you make adjustments as needed.”
For Katherine, the device has made a big difference. She still has seizures but not at the level she did.
“The VNS will not stop all seizures, but it will cut them down by 40 to 50 percent,” explained Dr. Ali. Eventually, the battery will need replacement, but it is a simple outpatient surgery in which the old battery is removed and replaced with a new one.
Katherine’s aunt can see the difference.
“Before the device, she was having as many as two or three seizures a day,” Kaye said. “Now it’s a couple a week. And for someone like Katie, that’s an incredible positive. She will not get to where she can drive a car, but is she functioning better? You bet!”
For Katherine, it means no more canceling classes at Solano Community College where she is currently focused on studying history. “I’m obsessed with not missing classes,” she said. “I really didn’t like having to miss class, even just for the surgery.”