Patient Stories
Sutter Neurosurgery
Pastor John – Controlling His Epilepsy and Living Life to the Fullest
Everything changed for Pastor John on Easter weekend in 1999. While grocery shopping for his family gathering, he had a seizure. “I remember that the food labels became blurry,” he said. “And then I remember waking up on a stretcher covered in blood.”
Pastor John was soon diagnosed with epilepsy. Medical examination later revealed that he was born with the disease. Aside from a few episodes that he dismissed as isolated incidents, John didn’t suffer any notable symptoms of epilepsy until his seizure that day in the grocery story when he was 52 years old. The seizure was a violent one; a store clerk who witnessed the event said John’s head was banging against the floor, causing bleeding.
The news of the diagnosis was especially devastating to Pastor John considering that public interaction and speaking are the heart of his job. He also had to cut back on his favorite hobby – and common mode of transportation – cycling. Unfortunately, medication didn’t work well for John. “I tried many different types of meds. Some had side effects that were worse than the seizures. So, I took additional medication to alleviate those side effects. I tried everything.”
After three years of unsuccessful medication, Pastor John was referred to Dr. Robert Burgerman at Sutter Neuroscience Institute. Dr. Burgerman put him through extensive testing at Sutter Medical Center’s Epilepsy Monitoring Unit and gave him new medication, and new hope, for being seizure-free.
Those hopes were dashed when Pastor John was walking to work one afternoon, not long after he began taking the new meds. “I felt a seizure coming on,” he said. “I knew I had to sit down on the road to get out of harm’s way.” When he woke up, Pastor John saw a police car and a fire truck with their lights flashing. He also saw that he was on the opposite side of the road from where he initially sat down. “I knew right then and there that medication alone would never help me. I wanted to try something else.”
Pastor John was initially skeptical when he heard about the Vagus Nerve Stimulator (VNS), a device that sends signals to the part of the brain that causes seizures. “It’s a machine that’s implanted in the chest. It has a wire that runs up through the neck and into the head,” John explained. “But I was concerned about that hard wire – I’m a cyclist and a skier and was worried about what would happen to that wire in a sports fall or crash.”
After doing more research, Pastor John learned that the VNS was being used in football players – without incident. “So, I decided to give it a try. If football players’ head-to-head tackles don’t affect it, I think it can handle my cycling and skiing mishaps.”
In April 2005, Dr. Cully Cobb, neurosurgeon with Sutter Neuroscience Institute, implanted a Vagus Nerve Stimulator into Pastor John. The surgery went very well. Dr. Burgerman began to reduce John’s medication. Within one and a half years, John was medication-free. And he was feeling like he was back in control.
“In the three years since my surgery, I’ve felt three seizures coming on – but they were each controlled by the VNS device,” he explained. In addition to the implant automatically stimulating John’s brain every few minutes, he can activate the VNS by waving a magnet over it. “I’m grateful the doctors at Sutter Neuroscience Institute helped me to control my seizures. As soon as I got better, I started living my life to fullest again.”
Earlier this year, Pastor John retired from his full-time job at a Lutheran church. “But I still work part-time,” he said. He continues to ski and rides his bike every chance he gets. “Life is great. I just got back from playing my French horn at a concert on the northern rim of the Grand Canyon. And, in a few weeks, I leave for a 600-mile bicycle trek through France!”
More information about Sutter Neuroscience Institute’s Epilepsy Program.