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Man makes medical history with device to control seizures
By Dwight Davis
The Dispatch
The Dispatch
Published: Monday, May 20, 2013
at 11:52 a.m.
Contributed photo
Toney Kincaid is shown with his wife, Betty. Kincaid has
a vagus nerve stimulation implant to control seizures.
Toney Kincaid spends much of his time keeping his grandchildren, whom he once
thought he would never see.
He was a ticking time bomb.
Ironically, a watch-like device gave him back his life. And little did he know he would become part of medical history, only the second person in the world to have a vagus nerve stimulation implant and the first person in the world to become seizure free because of it.
The nadir of his existence materialized in 1983 in the cafeteria of the Duracell Battery plant on U.S. Highway 64 where he worked. In front of some 200 coworkers, he began staggering, then convulsing. It wasn't just any seizure he was having. It was a grand mal seizure, the one that is characterized by a loss of consciousness and violent muscle contractions.
From that point, the Lexington native's life spiraled downhill. He lost his job, health insurance, driver's license and self-esteem. He still had his seizures, though — up to 3,000 a month. By 1988, his epilepsy was so out of control that doctors feared he didn't have much time to live.
"When my seizures began in 1983, I did not know how a seizure could take control of my body, and I had no control," remembers Kincaid, who is now 61 and lives in the Holly Grove community. "I would become confused and began to feel my body drawing, then I would lose consciousness. During these years, my family could not understand what was going on with me."
Kincaid's medical problem stemmed from abnormal and poorly formed blood vessels in the brain. Its medical term is arteriovenous malformation.
He had pioneering brain surgery for that in 1970 when he was 20 years old. "That was uncharted grounds back then. They didn't know a lot about it back then," Kincaid explains.
Scar tissue from the surgery resulted in his epidemic of seizures.
In 1984, he connected with fellow Davidson County native Dr. J. Kiffin Penry of Denton, a renowned neurologist and researcher who was in the forefront of efforts to improve medical treatment of epileptics. Penry, a former professor at the Bowman Gray School of Medicine at Wake Forest University, who died in 1996, told Kincaid he had two hard choices. He could become essentially a guinea pig for the fledging clinical research or die.
He choose the former but found no instant results. None of the four types of research drugs quelled his seizures.
"I was at my breaking point after being in research trials for five years, and nothing would control my seizures," says Kincaid, who explains he became virtually homebound. It was difficult to function in public. Many of his friends and acquaintances did not understand his malady and kept their distance. Parents of his children's friends would not allow them to visit.
A crude version of the stimulator was first implanted in animals.
Penry was the first to conduct such clinical tests on humans. "I remember Dr. Penry telling me, 'an old dog can't talk, so we're going to put it in you,'" Kincaid says.
According to Invention and Technology Magazine, the treatment involved implanting a cookie-sized device below the left collarbone, with positive and negative leads threaded up to the vagus nerve, around which were wrapped two platinum-foil coils. The two leads essentially created a closed circuit among battery, wires and nerve, thereby concentrating the current on the nerve better than a single lead and decreasing side effects. Penry used a computer to specify the frequency, strength and duration of the stimulations based on experience and the characteristics of the individual case.
Over nine months, beginning in March 1989, Penry slowly increased the strength of the stimulation he gave Kincaid. July 31,1989, was the first seizure-free day Kincaid could remember, and in January 1990 he had his last seizure.
"It's like a pacemaker for the brain," Kincaid describes.
Cyberonics of Houston, Texas, developed the VNS Therapy System. The treatment option recently hit a milestone of 15 years since FDA approval.
"Without this device I would not be living today," Kincaid says. Over the years he has had a half dozen different implants and two of the three different models of the Cyberonics product. The latest stimulator on the market is about the size of a small pocket watch with an indefinite battery life.
Kincaid plans to upgrade to the newest model in the near future.
"I would not have the ability to be a functional part of society without the device," Kincaid says. "With all my seizures, I had no short-term memory. I was unable to remember my children's names or to read. Everything became entangled. My wife could not leave me unattended."
The life-changing device, Kincaid says, "has given me back my self-respect. I felt useless and not worthy of being a husband or parent. When I was homebound for so long, it seemed there would never be any hope for my seizure disorder."
In addition to Penry, Kincaid says he is also indebted to his wife, Betty. They will celebrate their 40th anniversary this October.
The two often speak at medical conferences about the device.
"When we first started, Cyberonics wanted to hear my wife's side of the story. My seizures devastated our family. Our kids were afraid they would come home and find their daddy dead."
Kincaid says he is in relatively good health, though he has some weakness on his left side, which he attributes to his brain surgery.
He wants those who suffer from epileptic seizures to know about the device and how it can change their lives.
Dwight Davis can be reached at 249-3981, ext, 226 or at dwight.davis@the-dispatch.com.
http://www.the-dispatch.com/article/20130520/LIVING/305209993
He was a ticking time bomb.
Ironically, a watch-like device gave him back his life. And little did he know he would become part of medical history, only the second person in the world to have a vagus nerve stimulation implant and the first person in the world to become seizure free because of it.
The nadir of his existence materialized in 1983 in the cafeteria of the Duracell Battery plant on U.S. Highway 64 where he worked. In front of some 200 coworkers, he began staggering, then convulsing. It wasn't just any seizure he was having. It was a grand mal seizure, the one that is characterized by a loss of consciousness and violent muscle contractions.
From that point, the Lexington native's life spiraled downhill. He lost his job, health insurance, driver's license and self-esteem. He still had his seizures, though — up to 3,000 a month. By 1988, his epilepsy was so out of control that doctors feared he didn't have much time to live.
"When my seizures began in 1983, I did not know how a seizure could take control of my body, and I had no control," remembers Kincaid, who is now 61 and lives in the Holly Grove community. "I would become confused and began to feel my body drawing, then I would lose consciousness. During these years, my family could not understand what was going on with me."
Kincaid's medical problem stemmed from abnormal and poorly formed blood vessels in the brain. Its medical term is arteriovenous malformation.
He had pioneering brain surgery for that in 1970 when he was 20 years old. "That was uncharted grounds back then. They didn't know a lot about it back then," Kincaid explains.
Scar tissue from the surgery resulted in his epidemic of seizures.
In 1984, he connected with fellow Davidson County native Dr. J. Kiffin Penry of Denton, a renowned neurologist and researcher who was in the forefront of efforts to improve medical treatment of epileptics. Penry, a former professor at the Bowman Gray School of Medicine at Wake Forest University, who died in 1996, told Kincaid he had two hard choices. He could become essentially a guinea pig for the fledging clinical research or die.
He choose the former but found no instant results. None of the four types of research drugs quelled his seizures.
"I was at my breaking point after being in research trials for five years, and nothing would control my seizures," says Kincaid, who explains he became virtually homebound. It was difficult to function in public. Many of his friends and acquaintances did not understand his malady and kept their distance. Parents of his children's friends would not allow them to visit.
A crude version of the stimulator was first implanted in animals.
Penry was the first to conduct such clinical tests on humans. "I remember Dr. Penry telling me, 'an old dog can't talk, so we're going to put it in you,'" Kincaid says.
According to Invention and Technology Magazine, the treatment involved implanting a cookie-sized device below the left collarbone, with positive and negative leads threaded up to the vagus nerve, around which were wrapped two platinum-foil coils. The two leads essentially created a closed circuit among battery, wires and nerve, thereby concentrating the current on the nerve better than a single lead and decreasing side effects. Penry used a computer to specify the frequency, strength and duration of the stimulations based on experience and the characteristics of the individual case.
Over nine months, beginning in March 1989, Penry slowly increased the strength of the stimulation he gave Kincaid. July 31,1989, was the first seizure-free day Kincaid could remember, and in January 1990 he had his last seizure.
"It's like a pacemaker for the brain," Kincaid describes.
Cyberonics of Houston, Texas, developed the VNS Therapy System. The treatment option recently hit a milestone of 15 years since FDA approval.
"Without this device I would not be living today," Kincaid says. Over the years he has had a half dozen different implants and two of the three different models of the Cyberonics product. The latest stimulator on the market is about the size of a small pocket watch with an indefinite battery life.
Kincaid plans to upgrade to the newest model in the near future.
"I would not have the ability to be a functional part of society without the device," Kincaid says. "With all my seizures, I had no short-term memory. I was unable to remember my children's names or to read. Everything became entangled. My wife could not leave me unattended."
The life-changing device, Kincaid says, "has given me back my self-respect. I felt useless and not worthy of being a husband or parent. When I was homebound for so long, it seemed there would never be any hope for my seizure disorder."
In addition to Penry, Kincaid says he is also indebted to his wife, Betty. They will celebrate their 40th anniversary this October.
The two often speak at medical conferences about the device.
"When we first started, Cyberonics wanted to hear my wife's side of the story. My seizures devastated our family. Our kids were afraid they would come home and find their daddy dead."
Kincaid says he is in relatively good health, though he has some weakness on his left side, which he attributes to his brain surgery.
He wants those who suffer from epileptic seizures to know about the device and how it can change their lives.
Dwight Davis can be reached at 249-3981, ext, 226 or at dwight.davis@the-dispatch.com.
http://www.the-dispatch.com/article/20130520/LIVING/305209993
