In a playful moment on the night before his first surgery at the Medical College of Georgia, 10-year-old Greg West uses a stethoscope that a nurse has given him to listen to his mother Lynne's heartbeat. JEFF JANOWSKI/STAFF

Saving Greg: The surgery

Web posted November 14, 1999

 The surgery
 Additional surgery needed
 Recovery
 Progress fades
 After the surgery
 View the picture story

Story by Tom Corwin
Photographs by Jeff Janowski

EDITOR'S NOTE: Science and medicine reporter Tom Corwin and staff photographer Jeff Janowski spent 14 months following the progress of 11-year-old epileptic Greg West of Camden, S.C. Greg is among a growing number of epileptic children who will have portions of their brains removed in an attempt to stop their seizures.

Inside the classroom, the little boy's head hovers near the desktop. His face turned to the right, he watches the pencil in his hand move slowly up and down on the paper.

From the front of the desk, he looks almost as he did lying on his left side on the operating table, his head held in clamps and green surgical drapes enveloping his senseless body.

Only his right hand is moving now, achingly slow, as he carefully draws first one letter, then another, and another, forming the word.

``hell,'' he writes.

Then slowly his pencil draws a small balloon at the end of the last letter.

``helP.'' He glances at the word he is copying on the worksheet, then stares back at his faint creation.

``Greg, are you done?'' teacher Anne Green calls out from across the classroom. Greg West, 10, turns and holds up his worksheet. Then he puts down the paper and reaches to scratch the faint pink scar on the right side of his head, a scar that is slowly disappearing beneath a short crop of blond hair, a seam down the side of his head that weeks ago sprouted electrodes, a portal through which surgeons reached in and took a chunk of his brain.

He glances back at the paper. He is done.

Almost.

There are 2 million people like Greg, who appear healthy until a sudden storm of electrical impulses sweeps across their brains and they are jolted into seizures. Their limbs suddenly flail out of control, or they are left staring, frozen, their senses stolen. Many, like Greg, take powerful, often deadening pills in an effort to calm the jolts. Now he and thousands of other children are taking a chance on a delicate and tricky surgery, hoping to end the torment before it steals their chance for a normal life.

He was only 3, eating in front of the television at his grandmother's house, when it hit him the first time.

``All of a sudden he just fell backward,'' his mother, Lynne, recalls. ``His eyes rolled back in his head.''

At first, the frightened mother didn't know what to think, but Greg's grandmother Evora Price saw it right away:

He was having an epileptic seizure, just like Lynne's sister Cindy. They rushed Greg to the hospital, where it was confirmed.

Then, nothing. No more seizures.

A year passed, then another seizure. The doctors started Greg on a low dose of phenobarbital. He was 5 the day his little brother, Benjamin McKenzie, was born, and he had a much more violent grand mal seizure in kindergarten class.

``It had been a year since he had one, and we thought he had outgrown it. But he hadn't,'' Lynne says. Now the seizures kept coming. ``He'd have one every day.''

Their neurologist in Columbia referred Greg to Duke University Medical Center in Durham, N.C., where he was put on a machine to record the number of seizures.

``He had 120 seizures in 24 hours,'' says his father, Dennis. The bursts of electrical activity were flying so fast across his brain that doctors had a hard time telling from which side they began, much less the point of origin. First they tried one drug combination, then another. He was later referred to the Medical University of South Carolina in Charleston, where more drugs were tried.

Not even sleep offered escape. As he slept on the top bunk of his bunk bed, his mother would sleep fitfully on the bottom bunk, waiting for the tremors to begin.

``The whole bed shakes,'' Lynne says. ``I'll roll him over and talk to him until he comes out of it. He can tell me everything I say to him.''

And the drugs started taking their toll as pill after pill piled up year upon year.

Quest for a normal life

At the Wests' blue frame home in Camden, S.C., there is a box at the top of the closet full of family photos. Sifting through the box, Dennis West lifts out the Christmas photo from 1996. Standing next to his redheaded little sister, Megan, Greg is a smiling blond-haired boy in a dark sweater, the handsome older version of his little brother Mack sitting in front of him. But the idyllic picture is misleading, his father says.

MCG pediatric neurosurgeon Mark Lee.

``He was groggy most of the time,'' Dennis says. ``You can see it in his eyes.''

From across the living room, Greg watches as his father talks. Then he crawls slowly across the carpet toward the coffee table and a photo made to look like a baseball card. There he is, 8 years old, kneeling in his orange baseball uniform. Greg stares down at it for a long time but doesn't touch it.

``We tried to let him lead as normal a life as he could,'' Dennis says. ``He plays ball. He fights with his brother and sister.''

But the damage was becoming obvious. At age 7, his IQ was 80; at 10, it was 46. Instead of being in fourth grade, he receives individualized instruction in a special class of a half-dozen kids. He reads at a first-grade level, does math at a third-grade level.

It is that kind of damage that is prompting Yong Park, a pediatric neurologist at the Medical College of Georgia, and MCG pediatric neurosurgeon Mark Lee to push for epilepsy surgery earlier in children whosemedications obviously aren't working.

Children whose seizures aren't controlled and who stay on high doses of medicine only have about a 5 percent chance of developing into normal adults, Dr. Lee says.

MCG pediatric neurologist Yong Park.

``As adults, we can treat their epilepsy, but their lives have already been ruined,'' he says. Sitting on the couch across from him, Dr. Park nods in agreement.

``They're losing the really good time for learning,'' Dr. Park says. With successful surgery, ``they can be free of medication, they can be free of surgery, they can enjoy their lives.''

The key is locating the spot on the brain where the seizures start. Though brain surgery has been used since the mid-1950s to help control epilepsy, the ability to find the spots has improved with new imaging techniques. There is now a 60 percent chance that surgery on an extratemporal, or outer, lobe will allow someone like Greg to come off all medication within a year, Dr. Lee says. In patients with an identifiable lesion, or scar, on the brain indicating the source of the seizures, the success rate climbs to 90 percent, Dr. Lee says.

``It's like `X' marks the spot,'' he says.

But Greg's previous MRI scan showed nothing obvious. There is still a way, however, to pinpoint the trouble, Dr. Lee says as he fingers a 3-by-6-inch square of plastic studded with small electrodes. With the sensors placed a centimeter apart, doctors can place the grid on the brain and map the electrical storms as they erupt. But first, they must locate the critical motor pathways of the brain that move the arms and legs. And they must open up Greg's skull so they can place the grid on his brain.

Searching for solutions

Surgery wasn't the first or even second option the Wests considered as they desperately searched for a way to control Greg's seizures, which began like clockwork at 5 each morning when he was 10, erupting as often as 25 times during the day. A year ago, Greg's neurologist in Columbia mentioned the Ketogenic diet, a high-fat, low-protein diet that essentially sends the body into a fastlike state and for unknown reasons has eliminated seizures in some children. They joined a Ketogenic e-mail support group, where they found other parents looking for alternatives.

Still undecided about the diet, the Wests were intrigued by the vagus nerve stimulator, a small device like a pacemaker that is implanted under the skin high on the chest and sends electrical signals to the brain through the vagus nerve in the neck. With stimulating signals for 30 seconds every five minutes, the device can help control seizures for those whose medicine isn't working. As Dennis read about the device on MCG's Web site in January, he also downloaded information about the surgery program, which he showed to Lynne. Her response was less than enthusiastic.

``She immediately said, NO WAY,'' Dennis later wrote to the e-mail group.

But in March, the neurologist in Columbia told them that Greg's medication wasn't controlling his seizures and suggested they try another tack. They chose MCG. After five days of testing in July, Dennis says, Dr. Park thought Greg's problem was in the right frontal lobe of his brain and suggested he might be a candidate for surgery.

The operation is on

Aug. 12, 1998

The pain of the decision to go ahead shows on their faces as the Wests pace in a small room at MCG the day before the surgery.

Lynne is a slim, seemingly shy 36-year-old substitute teacher at Midway Elementary School near Camden; Dennis is a barrel-chested 38-year-old manufacturing operator at Dupont Chemical Co., with an almost unflappable friendliness and good humor.

As Lynne sits down, Greg sleepily crawls onto her lap and curls up, his thumb in his mouth. She seems to have trouble finding the words, blinking furiously under the fluorescent lights.

``We're scared,'' she says. ``But if it will help him, we want to do it.''

Hours from now, the worry will still show through as she smiles at a suddenly playful Greg bouncing around on his hospital bed. Later, Lynne and Dennis sit in a waiting room four floors up, aching for word of their son.

Aug. 13, 9:20 a.m.

In the operating room, the green tile and shiny metal instruments look cold. Greg lies on his left side, his shaved head clamped tightly in place. Dr. Lee and pediatric neurosurgery resident Peter Brown carefully cut from just behind the right ear, up across the right side of the head, creating a circle that outlines the right side. They slowly peel back the skin and then the tough layer beneath, called the periosteum, pinning both back in a flap that exposes the skull.

Dr. Brown drills holes around the edge of the circle and then ``connects the dots'' with a saw before popping off the small cap. Within 90 minutes, they have exposed the small, pink brain underneath.

In the operating room next door, stereotactic neurosurgeon Joseph Smith is at exactly the same point in exposing the brain of his patient, a 34-year-old woman who has suffered seizures for 20 years. It is another argument for trying surgery earlier, Dr. Smith says.

``If you can get them before their formative years, you can really change their lives dramatically,'' Dr. Smith says through his mask.

In his own operating theater, Dr. Lee is standing back from the table, awaiting the arrival of an epilepsy team that will send electrical signals into different parts of the brain to find the critical areas that control movement. Dr. Lee is looking down at Greg with a familiar fondness.

``He looks like my son,'' Dr. Lee says quietly. He thinks about all the medicine Greg has taken for his seizures and about what might be if the surgery works.

``We can have a huge impact on his life and his future,'' he says, echoing Dr. Smith next door.

While he waits, a nurse calls Dr. Park's office to summon him to the operating room.

``The brain is ready for him,'' the nurse says.

10:40 a.m.

A machine that sends out small bursts of electricity is wheeled into the operating room. Dr. Lee stands at the head of the table, poised above Greg's brain with an electric probe in his hand. On the far side of the table, three nurses hold up the green surgical drape with their heads ducked underneath, as if rain is about to pour down in the operating room. One nurse is watching Greg's face, another, his hands, and another is pointed in the opposite direction watching his feet.

A current from the machine flows into the probe as Dr. Lee gently touches it to the brain and says, ``On, off.'' No reaction. ``Nothing,'' the nurses say in unison.

He moves it slightly and tries again.

``Nothing,'' the nurses reply in unison. Moving around in tiny increments, there is still nothing. The current is increased.

``On, off,'' Dr. Lee says. More tries, nothing. The current is increased, and Dr. Lee presses the probe down again.

``OK, hand,'' a nurse calls out from under the drape. Dr. Lee takes a tiny piece of paper with the number 1 on it and slips it gently onto the surface of the brain, then moves the probe down slightly. ``Hand again,'' the nurse calls out as Greg's fingers curl up. As the minutes pass, Dr. Lee gently probes around a small area at the top of the head.

``OK, where's the face?'' Dr. Lee says to himself.

``The face is usually higher up,'' Dr. Park offers.

Slowly, a small line of numbers, 1-2-3, form on the surface down the center of the exposed brain. Dr. Lee and Dr. Park huddle to study the pattern.

``I think it goes up like this,'' Dr. Lee says, tracing a line in the air over the brain.

Over the next half-hour, they probe other areas, trying to find the spots that will stimulate the electrical storm that creates the seizures.

Finally, Dr. Lee trims the grid to 48 electrodes and places it just forward of the motor area, mapped out as a small triangle. A smaller strip is placed in the area between the hemispheres of the brain to detect any impulses crossing over. The wires attached to the grids trail off to the side of the head and will come out through a small hole in the skull once the cap is replaced.

into the clear plastic face mask. Their eyes never leave his face as he appears to doze. Lynne reaches out and straightens the blanket across his chest. At the bottom of the bed, the blanket has crept up and his big, pale foot juts out.

``His eyes were real red'' when he came to earlier, Lynne says. ``That's why I thought he'd been crying.''

Greg's eyes flutter, and Lynne leans close.

``You OK?'' she asks. ``Does it hurt?''

``Yeah,'' he says faintly, his breath fogging the mask.

Aug. 17

There is a second Greg on the television over the bed, appearing in black and white. Next to the picture on the screen, a thin, squiggly line undulates from top to bottom, a measure of his brain's electrical activity. He sits below the monitor on the bed, seeming oblivious to the wires trailing out of his head.

``It hasn't seemed to bother him at all,'' Lynne says. There are deep circles beneath her eyes, evidence of the toll of Greg's continuing seizures.

``He had one about 1:30 and another one around 4:30 a.m.,'' she says. ``Last night he had bad ones.''

The attacks showed up on the TV screen, Dennis says.

``There would be higher spikes'' on the monitor, he says.

Greg fumbles around on the table, looking for something.

``My drink,'' he says.

``You can't have a whole lot,'' Lynne says.

From under the cover comes a strange sound, and Greg pulls out a bear with a flashlight in its hand. ``Bubba Bear,'' Dennis says.

``I thought I heard something,'' Bubba says. ``I think it's in the closet. I'm scared, will you hold me?''

Greg laughs. ``We were playing with that when he was asleep,'' nurse Kim Luckey says as she delivers some medicine.

After five days of monitoring, doctors have seen enough seizures to go ahead with the surgery. This time, doctors will go after the source of the attacks.