Relief from epileptic seizures after 33 years of suffering and searching

During this season of gratitude, Clayton Phillips gives thanks for a tiny device in his brain that finally has stopped his seizures and has allowed him to drive and live again.
November 18th, 2020
Clay Phillips behind the wheel of his truck after getting relief from epileptic seizures.
Clay Philllips is thrilled that after 33 years, he got relief from epileptic seizures and now has his driver’s license back. Thanks to a device in his brain, Phillips’ seizures now are a thing of the past. Photo by Chuck Bigger for UCHealth.

Along the banks of Hardscrabble Creek, Clay Phillips scavenges the land where the wind seems to carry voices of five generations and the Native Americans who came before him.

The Sioux, Apache, Ute and others long found sustenance and plentiful hunting grounds in this area near Cañon City in southern Colorado.

After a hard rain, Clay, 45, hunts along the Hardscrabble on his family’s ranch — not for venison or rabbit — but for artifacts, flint arrowheads that the first Americans left behind.

For 33 years, Clay also searched for something bigger — relief from epileptic seizures so violent that they dislocated his shoulders, forcing him to have seven surgeries. He’s among countless people who live with chronic diseases and believe they have little chance for a medical breakthrough.

During this season of gratitude, Clay wants to share a message of hope and inspiration with all who suffer: Never, ever give up. Scientists and doctors are working every day to find answers, and sometimes, they come. Just ask Clay.

“It still seems unreal almost,’’ said Clay, a gentleman and old soul, who leaves lemonade and cookies out for guests, cares regularly for on older neighbor, and finally, after more than 30 years, is free from epilepsy.

The search for relief from epileptic seizures

For much of Clay’s life, there wasn’t much doctors could do for him. Diagnosed at age 11, he’s done his share of suffering. As he grew older, seizures left him in a mental and physical fog that stole many days from him and prevented him from driving or working. Then, thanks to the wizardry of modern medicine and great doctors, the seizures ended. Just like that. An illness that had imprisoned him since 1985 no longer demonized him. He has not had a seizure since Dec. 12, 2018.

Clay Phillips and his wife, Diana, take a walk on the family ranch after Clay got relief from epileptic seizures..
Clay Phillips and his wife, Diana, take a walk on the family ranch. He is finally able to help on the ranch again after getting relief for epileptic seizures. Photo by Chuck Bigger, for UCHealth.

“We have patients who are told ‘You have to live with this,’’’ said Dr. Mark Spitz, Clay’s neurologist for more than two decades. “That might have been accurate at a certain point in time, but patients have got to keep checking and rechecking to make sure there isn’t something that can help them.’’

In his younger years, Clay’s seizures came when he slept, about every six months. Medication did a good job of keeping them at bay, but by the age of 16, after he got his driver’s license and his body matured, seizures came more often and they were more severe. By age 18, Clay had seizures three to five times a week. One of them caused an accident, and he wasn’t able to drive anymore.

He worked on his family’s ranch, doing strenuous labor, bucking hay and helping to plant trees. By age 24, before he married Diana, a Cañon City teacher assistant and photographer whom he met through a friend from church, Clay had his first of seven shoulder surgeries.

“I was helping my dad and my brother out on the ranch. When I would have grand mal seizures, they would cause my muscles to tense up and dislocate my shoulders,’’ he said. “Dr. Spitz told me that it was because of how strong I am from ranch work, and he usually only sees this in men. I would have to put them back in, and then I’d go back to work. After a while, they started to dislocate when I would do other activities like swimming or starting the lawn mower.’’

Clay Phillips displays an arrowhead that he found near Hardscrabble Creek.
Clay Phillips displays an arrowhead he found near Hardscrabble Creek. His wife, Diana, looks on. Photo by Chuck Bigger, for UCHealth.

Eventually, Clay no longer could help on the ranch. His shoulders got so bad, he couldn’t close a car door.

“I had to wear slings just to keep them in,’’ he said. “There were times when I would roll over in my sleep and dislocate a shoulder.’’

Quality of life declines

For years, Clay’s quality of life declined. In 2002, doctors tried to determine where the seizures were originating in his brain but couldn’t pinpoint the exact location. Clay received a diagnosis at that time of “generalized cluster epilepsy.’’

Diana watched as her husband’s quality of life deteriorated. A grand mal seizure, she said, might last seconds, but the after-effects would continue for a half hour.

“He would be staring off in space,’’ she said.  “He doesn’t realize what is going on. He loses consciousness, but he can still respond. Instinctually, he will respond but he will make absolutely no sense. He’ll repeat himself. Usually, he will repeat the same phrase.’’

Dr. Mark Spitz who helped Clay get relief from epileptic seizures.
Dr. Mark Spitz

To determine whether the fog of the seizure had passed, Diana would ask: “What is today? Is it daytime or nighttime?’’ she said. “And some of the random, easy questions that you should be able to answer, until he could answer them, he wasn’t out of the seizure.’’

Full recovery and a return to mental clarity could take anywhere from one to two days. Often, during the first 24 hours, Clay could only sleep.

“He couldn’t do anything else,’’ Diana said. “He always felt horrible with a massive headache. He wouldn’t eat because he just couldn’t. The second day would be hit and miss. Sometimes he would be OK, sometimes he wouldn’t.’’

For a period of time, Diana didn’t feel comfortable leaving him alone, so he stayed at a friend’s home during the day while she went to work.

Doctors used medications to try to control the seizures. The drugs worked for a while, then didn’t. Unable to do hard labor on the ranch, Phillips took a job driving for a pizza company. His seizures had been controlled enough for three years with medication to allow for him to drive. At the age of 31, he had a seizure while driving which resulted in another car accident. No one was injured, fortunately, but doctors told him he could not drive again. Since he couldn’t drive, he constantly had to ask for rides, that is, if he even felt well enough to walk.

Quest for relief from epileptic seizure continues

In 2008, doctors tried to implant a device called VNS (Vagus Nerve Stimulator). When activated, the device sends a signal to certain areas of the brain in hopes of quashing, in Clay’s case, epileptic seizures. Unfortunately, though, it didn’t help much. Clay’s seizures continued.

Then, in early 2018, Spitz, who is chief of the Department of Neurology at the University of Colorado School of Medicine, had news to share about progress being made in epilepsy treatment. RNS – Responsive Neurostimulation – offered enormous possibilities and doctors at UCHealth’s Neurosciences Center on the Anschutz Medical Campus lead the world in the number of procedures performed.

The best way to understand RNS is to think of it as you might an implantable ventricular defibrillator for the heart, Spitz said. A device is inserted under the skin; a wire that delivers an electrical pulse leads to the heart and shocks it when it detects a rhythm problem.

Clay Phillips and his wife, Diana, walk along Main Street in Florence, Colorado.
Clay Phillips and his wife, Diana, walk along Main Street in Florence, Colorado. Clay is relishing the simple pleasures of life now that he has found relief from epileptic seizures. Photo by Chuck Bigger, for UCHealth.

“What we’ve done now is extrapolated that same concept for the brain, and it is very individualized and we implant electrodes just in that hotspot in the brain,’’ Spitz said.

Faster computers provide new hope for relief from epileptic seizures

Having better, faster computers than were available five or 15 years ago has been the driving force for change, he said. For Clay, the first thing doctors had to do was identify the origin of the seizures in his brain.

“The way of testing or localizing where the seizures are starting is called stereo EEG and it is nothing new,’’ Spitz said. “But what it entails is putting in wires, and that is nothing new but these are now thin wires.

“This technology started in the 1950s in France and what we would do is drill holes in the skull of the person and insert these electrodes and those electrodes, in the old days in France, were like shish kabobs. Now they are thin wires,’’ Spitz said.

In the old days, physicians didn’t have computer imaging like they do today. Targeting was imprecise and because probes were larger, patients were more prone to bleeding, creating complications for patients.

“Then, computers came along and it got better and better and better,’’ Spitz said. “We were able to look at the patient’s MRI scan and go to a screen and target what we wanted to cover in terms of potential spots where the seizures might be coming from.’’

Computerized imagery allowed doctors to implant electrodes more precisely and avoid bigger blood vessels, which helped to lessen bleeding. While computerized imagery improved, so did the electrodes.

“We have a pretty good idea when we go in of where the seizures may be starting,’’ he said. “We cover those areas, but we don’t cover every little spot on the brain. We can’t because it is too dangerous. We put in 10 to 15 wires and each wire has about 10 contacts on it, which record the brain’s electrical activity, which is what we did for Clay.’’

Clay won’t ever forget the test. “That test was crazy. They gave me a drug that put half my brain to sleep and asked me questions. They waited awhile to let my brain wake up, and then did it again to the other side.’’

Rapidly developing science around seizures

Only five years ago, technology limited physicians to only about 30 spots on the brain. At that time, doctors had to open a person’s skull instead of drilling individualized holes. They placed a grid, about the size of a credit card, over a person’s brain and then searched for the origin. Those patients had to spend several days in the hospital recovering after the electrodes were removed and data was obtained. Now, the electrodes are removed by pulling them gently out of the head. Patients usually go home the next day.

On Oct. 4, 2018, doctors completed Clay’s RNS surgery. They removed a little piece of bone in the skull and placed a microprocessor powered by a battery. The microprocessor monitors electrical signals and detects a seizure, and shocks the part of the brain, stopping the seizure before it develops. UCHealth and the University of Colorado School of Medicine lead the nation in the number of patients who have received RNS treatment.

“In Clay’s case, the advancement in medicine has made a dramatic change in his life,’’ Spitz said. “We were kind of stuck — but because of new technology — in his case it is new computers, I can really help people that I couldn’t help before.’’

The microprocessor was placed in “monitoring’’ mode and Clay had a seizure on Dec. 12, 2018 – his last. The device was fully activated in January 2019.

Clay Phillips stands near Hardscrabble Creek
Clay Phillips stands near Hardscrabble Creek, a special place on his family’s ranch. Clay is thrilled that after 33 years, he finally got relief from epileptic seizures. Photo by  Diana Phillips.

“I really loved the doctors,’’ he said. “They told me all the risks and I really love UCHealth and all the doctors.’’

Each night, Clay downloads data from the device in his skull onto a laptop computer. The data is then sent to physicians who review it at University of Colorado Hospital.

Getting back behind the wheel

After more than a year without seizures, doctors cleared Clay to drive again. In the days before he took the test to reinstate his Colorado driver’s license, he felt like a teenage boy.

Since he had not driven a car for 14 years, he practiced for weeks before taking the test. Diana rode in the passenger’s seat as he drove through the small town of Florence, not far from where his family homesteaded five generations ago.

Diana noticed her husband’s right turns weren’t as sharp as they needed to be, so Clay practiced making right turns – around and around they went. In March, just before the pandemic changed everything, Phillips aced his driving test. The couple celebrated that night over a steak dinner at K-Bobs in Cañon City.

In recent months, Clay has been able to return to the ranch and do some light duty with his father and brother. He’s been helping to bale hay, though his shoulders are very sore afterward.

After a heavy rain, Clay tries to get out to the ranch where he can hunt for arrowheads and artifacts along the creek. He has a knack for seeing the glimmer of flint along the banks of Hardscrabble Creek.

“As of right now, I’ve got the freedom to just go anywhere. I don’t have to ask people for rides anymore. I’ve been able to help out on the farm a little bit,’’ he said. “I can go run an errand when I need to, and I can run errands for my wife. We are currently planning a vacation. We now don’t have to make plans that include if I have a seizure.

“It’s just nice to have that freedom,’’ he said. “I praise God and the doctors for the amazing care and success of my case.’’

About the author

Erin Emery is editor of UCHealth Today, a hub for medical news, inspiring patient stories and tips for healthy living. Erin spent years as a reporter for The Denver Post, Colorado Springs Gazette and Colorado Springs Sun. She was part of a team of Denver Post reporters who won the 2000 Pulitzer Prize for breaking news reporting.

Erin joined UCHealth in 2008, and she is awed by the strength of patients and their stories.