Christine Cobb Roderiquez, a friend of thirty-five years, knew Fegan through her uncle. She says, “Dennis stepped in when I lost my father…he has always been a very kind person. He loved to help people.”
Work on the oil rigs took a toll, however. Although it paid well, it was exhausting, dangerous work, and it kept him away from his family. Within a few years, and with a second child on the way, Fegan decided to take a job closer to home. He went to school to become a paramedic and found a job with the Corpus Christi fire department. Eventually he rose to the position of captain.
In Corpus Christi, as in many other cities, emergency medical services are provided by the fire department. But in Corpus Christi, unlike some cities, paramedics are cross-trained as firefighters, and they alternate shifts, working one day as firefighters and the next day as paramedics. After Fegan was fully qualified as a paramedic, he underwent firefighter training, which involved an additional three months of intensive physical drills and book learning. He loved both jobs.
As a paramedic, Fegan was trained to administer a full line of emergency medicines, and the ambulance he worked in was also equipped with a state-of-the-art cardiac monitor that could transmit a patient’s heart tracing (or cardiogram) in real time from the ambulance to doctors at the hospital who could guide the care of patients. If communications were lost, or for some reason a doctor wasn’t immediately available, Fegan was trained to make decisions on his own, using approved protocols, in situations ranging from life-threatening asthma to out-of-control diabetes and instances of deadly status epilepticus, which Fegan had treated successfully on more than one occasion. He says, “Our goal was to get them there alive.”
But a lot of emergency calls, says Fegan, weren’t real emergencies. “We’d get calls from people who had a leg ache for a week and they think the ambulance is a taxi service.” The problem was especially acute in the poor part of town, where many people didn’t have a doctor or insurance, making the hospital emergency room their only source of healthcare.
Looking back many years later, he still vividly recalls one of the worst emergency calls:
We responded to a suicide report. We had a ride-along that day, a student paramedic. When we get to the scene, a man is lying [faceup] on the rug. He had an obvious gunshot wound in the middle of his forehead, and he had a .22-caliber gun in his hand. I didn’t notice any breathing at first, and I told the student to go up to establish a level of consciousness. He gave the man a little shake, and the man sort of jumped and opened his eyes. Then I noticed that there was no exit wound and no pooling of blood. When we got him to the ER, the doctor said the forehead is the thickest part of the skull, and the bullet simply traveled around his head between the scalp and skull, and all he had to do was to make an incision and remove the bullet.
On another of the most disturbing calls, Fegan arrived at a house and found a young man hanging dead in a closet.
“The really gory, traumatic stuff,” says Fegan, were the car accidents. He coped with the horror of these scenes the same way he coped with the dangers of being a roughneck: when it came to fear and trauma, he says, “I think I would just try to put that out of my mind. At the scene you have to concentrate on your job.”
Some paramedics hesitated to go into certain parts of town, especially where shootings and assaults were more likely to occur, but Fegan says that while he was a little leery at first, he found “everyone treated me with respect. I never had a problem with anybody, even in the worst part of town.”
Fegan may not have had a problem going into high-crime areas, but he had a close brush with death while fighting a fire once. He was decked out in full gear, wearing his helmet, full face mask, and the heavy suit known as a bunker suit, along with an air pack on his back. The oxygen supplied by an air pack is usually enough to allow a firefighter to breathe for thirty minutes. Fegan recalls,
We were inside this large house. The air pack gives you a warning if you’re close to running out of oxygen. I got the warning, and I knew I had to get out of the house fast. But the house was so large, and I couldn’t see because of all the smoke, so I kind of got lost. In these situations you’re supposed to follow the water hose by straddling your feet on either side of the hose and feeling your way out. But the hose made some loops, and I didn’t know if I was going to end up at the nozzle end of the hose or the front door. I knew I’d be dead if I didn’t make the right choice. And just as I did get to the door, the air pack ran out.
You can get exhausted. A lot of people, after fighting the fire for a while and wearing all the heavy gear, have to get out of the building. You fight until you can’t fight any more. And you’re not criticized for it. But I never had a problem where I’d have to leave. After working in the oil fields, sometimes working up to twelve hours a day, I was in good shape.
Fegan’s work was tough, but he enjoyed it. For him, fighting fires was a “fun challenge.” His son Derrick remembers feeling proud of his father’s job, saying, “When he brought his turnout gear home you could smell smoke on it. And that became a passion of mine. I thought: I want to do that.” (Derrick, who is now thirty-one, eventually did follow in his father’s footsteps and became a paramedic and a volunteer firefighter in Austin, Texas.)
Around the time that Fegan became a captain in the department, Henry Gonzalez noticed a change coming over his friend. “I remember being with him at his house while he was studying to become captain,” he says. “We were chatting, and all of a sudden his conversation took a turn and he wasn’t making any sense…his words were clear, but he wasn’t making complete sentences…it went on for about fifteen minutes, and then he started to make sense and then he’d say, ‘Now, what was I talking about?’”
Then one morning, after pulling a twenty-four-hour shift at his paramedic job, Fegan got in his Isuzu pickup truck to drive home. He has no idea what happened, but somewhere along the way he blacked out. When he came to, he was parked at a haphazard angle outside a stranger’s house, groggy and confused. He’d apparently made it most of the way home, and when he blacked out his truck had rolled to a stop on the slight upward incline of a neighbor’s driveway. As he awakened, he says he realized his tongue was “bloody and nearly bitten off.” He pulled himself together and drove home. Then he called his doctor.
Fegan’s doctor listened to his story and concluded that he’d probably had a seizure. He wasn’t sure just why, but he suggested it might be from too much drinking. Fegan reckoned he might be right. He did like his beer, and would sometimes drink eight to twelve cans a day. So he quit. Just stopped. Nonetheless, he had another seizure. That time he’d been dry for six months.
After the second seizure, his doctor prescribed phenytoin, a first-line drug for seizures, and told him he couldn’t drive anymore. He was put on light duty at work. Soon he was having a new type of seizure—odd episodes where he’d “phase out.” Once, his father noticed his arms jerking while he remained sitting up. His sister, Catherine, says he “just looked deep in thought” during his episodes. She recalls, “He’d seem to glance down. He wouldn’t look you in the eye. Then it looked like he was chewing the inside of his cheek. Once, he put his hands up as if to say, ‘Excuse me’—and then he was out of it.”
Fegan’s neurologist explained to him that he had temporal lobe epilepsy, which can cause “complex partial seizures”—a form of epilepsy that can cause odd symptoms.63, 64 (Sometimes temporal lobe seizures can trigger grand mal seizures, and Fegan was plagued by both.) Partial seizures aren’t like grand mal seizures, the sort most people associate with “epilepsy.” Grand mal seizures cause people to lose consciousness, fall down, and shake violently as an electrical firestorm sweeps over most or all of the brain. A person in the grip of a grand mal seizure often loses control of his or her bowel or bladder.
The rogue electrical impulses of temporal lobe epilepsy, on the other hand, affect only a small portion of the brain, allowing other areas to continue to function—albeit in a potentially alt
ered fashion. Vision, speech, and the ability to walk might be preserved during a temporal lobe fit. The manifestations of the seizures can vary widely, making temporal lobe epilepsy difficult to diagnose, because doctors generally have to rely on a patient’s or witness’s description of the episode. Individuals in the throes of a complex partial seizure might walk aimlessly from one room to another. They might make odd, repetitive, and useless gestures known as stereotyped movements (like chewing the inside of the cheek repeatedly, as Fegan’s sister had observed him doing). They might look as if they are repeatedly and ineffectively reaching for something or attempting to straighten out an article of clothing. Sudden bursts of rage and psychotic episodes can also occur. But perhaps the most puzzling effect of a temporal lobe seizure is the strange fuguelike state of consciousness that some individuals experience, a state in which they appear suspended between full alertness and a dreamlike netherworld.
Whatever the cause, over time, it was hard to find the right combination of medicines to control Fegan’s seizures, and he became one of the roughly 20 to 40 percent of people with epilepsy who are “treatment resistant”—individuals whose seizures are poorly controlled with medicine.65, 66 So the calendar where Fegan kept a record of his seizures was especially important: his doctor consulted it and adjusted the types and doses of medicines he prescribed for him accordingly.
Even without changes in his drug regimen, the number of seizures Fegan had could vary wildly. One month he might have a dozen seizures a day, for many days. Another month, he’d go days or weeks with no seizures at all. It wasn’t easy to manage his medicines. After a while there were so many pills that it could be hard to remember to take them all, and the side effects could make him feel groggy and slow, as if he were trying to move through quicksand.
The events following Fegan’s early seizures unfolded with ferocious speed. His friend Gonzalez describes Fegan’s transformation: “He went from having a good job, a job he loved, to no job, no car, no driver’s license—and now he has to walk to the grocery store. He became very apprehensive to go anywhere. I think he was more afraid of someone seeing him have a seizure than he was of hurting himself.” It wasn’t long before Fegan’s seizures started to take a toll on his personal relationships. Unable to drive and forced to retire from his career as a paramedic and firefighter, he began to withdraw, avoiding going out to see people.
Roderiquez, his friend of thirty-five years, also noticed the changes in Fegan’s personality over time. Before the seizures, she says, “Almost every day we could we’d go to the beach, go jogging, hang out, drink beer.…We’d go to clubs and we’d dance; we loved to dance. We’d go out with my uncle’s friends, and they always looked out for me, especially Dennis. He has a heart of gold.” But, she says, after the seizures started, her friend retreated. They didn’t go to the beach or out dancing. Fegan stayed inside and kept to himself.
Fegan’s son Derrick recalls the day when his dad’s seizures forced him to retire from the fire department. He had seen his father as a man who ran into burning buildings to save people, a man who would brave dangerous situations as a paramedic to save lives. Now he seemed afraid to leave the house. Derrick didn’t understand what was happening to his father at the time, and his behavior made the younger man feel angry and confused.
Fegan didn’t tell anyone about his fear of having a seizure in public—not even his family. When he failed to show up with his sons as promised for a family Christmas gathering, his parents and siblings were hurt, even offended. Like a tortoise slowly retracting its legs and head into its shell, Fegan was becoming a recluse—and his bewildered family didn’t understand why.
His mother had a theory about his seizures. “I’d blame them on the beer, and I had no sympathy,” she says. What else could explain his behavior? Matthew, too, thought his brother’s problem was related to drinking. But after a few extended visits with Dennis, Matthew says he realized that his brother had a genuine medical problem: “I would come in for the weekend, and I’d be there all day long…and he’s in [my] presence the whole day and [I] know he’s had nothing to drink, but his behavior was so much like someone who was drunk or hungover.”
It is not surprising that Fegan’s complex partial seizures were misread. In the late 1800s, famed British neurologist John Hughlings Jackson described the mental state of individuals experiencing a temporal lobe seizure as a “dreamy state” in which he or she might have a “double consciousness” with vivid hallucinations, as if a dream were intruding on the waking, conscious state. Such individuals could seem drunk or crazy—or even appear to be simulating or faking a problem.67 Many patients with complex partial epilepsy are referred to psychiatrists, because doctors as well as family members fail to recognize the condition as epilepsy.67, 68
On the less common occasions when Fegan would have a grand mal seizure, bystanders would immediately recognize the problem. But most of the time his seizures were so subtle that it would be difficult even for a careful observer, or Fegan himself, to know what was happening. He says, “I might be standing in a checkout line at a grocery store and the next thing I know, other people in the store are asking me if I’m okay.” At these times, Fegan would go into the fuguelike state described by John Jackson. He wouldn’t fall down. He wouldn’t lose consciousness in the ordinary sense. And other than sometimes appearing to be chewing the inside of his cheek, he didn’t shake or make any unusual movements that might signal a seizure. It was as if he were experiencing intermittent episodes of suspended animation.
Despite treatment with multiple medicines, Fegan’s seizures persisted, and he began to look around for other options. His neurologist, Dr. Juan Bahamon, referred him to a doctor in another town, a two-hour drive from Corpus Christi, where he could be evaluated for possible brain surgery. If doctors can identify the area of the brain that is triggering seizures, known as the epileptogenic focus, surgically removing that small part of brain can be an effective treatment.
Fegan underwent a battery of tests, including a video electroencephalogram (video EEG), a test that combines a brain-wave test with video of a patient to detect seizure activity in relation to brain-wave changes. The tests told the story: six areas in the right temporal lobe of Fegan’s brain were misfiring. And there was a possible focus deep in his brain stem, an area too dangerous to cut.
Since he wasn’t a candidate for surgery, Fegan asked Bahamon for help. Wasn’t there something else that could be done? Bahamon told him about a last-ditch option: the vagus nerve stimulator (VNS) device. No one was quite certain how or why shocking the vagus nerve could control seizures. But according to Cyberonics, the company that manufactured the device, the VNS was effective and safe, usually causing only minor side effects such as a cough or hoarse voice. Cyberonics had won FDA approval to market it as a treatment for epilepsy just three years earlier, in 1997.69
For Fegan, the decision was a simple one. He trusted his doctors and didn’t second-guess their recommendations. Eight years after he was first diagnosed with epilepsy, in June of 2000, at the age of forty-two, he underwent implantation with the VNS device.
The neurosurgeon implanted the device by first making two incisions, one under Fegan’s left collarbone and another at his neck, near his carotid artery. He then tucked the matchbox-sized device just below Fegan’s collarbone and tunneled two wire leads from the device up to his neck, where he carefully wrapped the wires around Fegan’s vagus nerve. During the operation, the neurosurgeon tested the device by triggering small electrical shocks to the nerve. It delivered the tiny shocks as expected.
To Fegan, the surgery was no big deal. He was, after all, a former oil-rig worker, a fighter of fires, a guy who had for years been at the mercy of debilitating seizures. The device, he figured, could only make life better. His incision sites healed up nicely, and the electrical component of the device was switched to Off for the first two weeks following surgery—a standard approach to allow the vagus nerve to recover from being manipulate
d and encircled with wires. When the device was turned on again, he didn’t have any of the common side effects caused by the device. He didn’t cough. His voice wasn’t hoarse.
It appeared as if Dennis Fegan was simply the latest beneficiary of one of the miraculous technological cures that modern medical science was steadily producing to alleviate the suffering of countless victims of disease. Neither Fegan nor his healthcare providers had any idea that the implantation of the VNS device would prove to be the start of a disastrous downward spiral that would all but destroy his life.
* * *
It’s likely that very few of the tens of thousands of patients who have vagus nerve stimulators in their bodies have ever wondered about the experimental origins of the device. Even most physicians who recommend and implant the device have little knowledge of the science behind it. But the story of the VNS device is a fascinating and revealing illustration of how, in the last three decades, scientific breakthroughs have been converted into technological tools and then, at an accelerated pace, into moneymaking products.
The story begins with Dr. Eugene Braunwald, arguably the golden boy of modern American medicine. His biographer and colleague, Harvard cardiologist Thomas H. Lee,* says Braunwald is more responsible than any single individual for the dramatic transformation of medicine that began in the second half of the twentieth century.17 Lee writes, “Since the 1950s, the death rate from heart attacks has plunged from 35 percent to about 5 percent—and fatalistic attitudes toward this disease and many others have faded into history. Much of the improved survival and change in attitudes can be traced to the work of Eugene Braunwald, M.D. By redirecting cardiology from passive, risk-averse observation to active intervention, he helped transform not just his own field but the culture of American medicine.”17
The Danger Within Us Page 3
