Greg waits patiently with his dad for an MRI in March. The MRI will help determine if Greg is a candidate for a device that blocks seizures as they start to form. JEFF JANOWSKI/STAFF

Saving Greg: Progress fades

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

Oct. 24

They all hide the scar somewhere beneath their hair as they mill about the crowded room, squeezing between folding tables and chairs, wandering among Halloween decorations and orange and black balloons.

Nearly 100 people who have had parts of their brains removed to combat epilepsy return for an annual reunion. They range from a baby 14 months old to the first MCG patient to undergo such a procedure, Carol Butterfield, now 65, who had surgery in 1981.

They number roughly 760, about 130 of whom are children, Dr. Lee says. Though the idea of performing the surgery on children is still not widely accepted, ``that's something we'd like to change,'' Dr. Lee says. ``We're one of the pioneers of that.''

About one-third of the epilepsy surgeries at MCG are now done on young patients, he says.

Greg sits quietly at the table with his mother, father, brother and sister, just taking it in. The next week he is going to a church Halloween party, and he has already decided who he wants to be.

``Batman,'' he says.

``I don't think you better go as Batman,'' Dennis says, laughing. ``Batman wasn't in the Bible.''

Two months after the surgery, the seizures are still coming; he had a light one in his sleep that morning, Lynne says.

``It's just going to take some time,'' she says, pulling on a thin smile.

If ever a crowd of people understood what she means, it is this one. One by one, nurse Wanda Harper calls out patient names in the door-prize drawing and coaxes them up front to the microphone.

During an EEG, Greg blows on a pinwheel as part of a test. The procedure is being performed to determine what is causing a sudden wave of seizures four months after the surgery. JEFF JANOWSKI/STAFF

``I work full time now,'' says Kevin Crawford, 35, a paramedic in Farmerville, La. ``That's one bad side effect. I have to work now.''

Greg's eyes linger on him as he walks back to his seat.

Mr. Crawford's seizures began when he was 9 or 10 but really became bad when he was 15.

``I had just gotten my driver's license, and they took that away,'' he says. ``It steals your childhood.''

Many of those who have had surgery, like Mr. Crawford, no longer have seizures and are off medication. But even if he still had seizures, or, like Greg, still had to take some medication, Mr. Crawford would call it a victory. That's what he wishes for Greg, he says.

``Just getting better is a miracle,'' he says.

But for Greg, it is still a matter of good days and bad days. In the weeks that he has a cold or his allergies flare up, the seizures return in bunches. Other days, when he has had no seizures, Mrs. Green can tell as soon as he walks in the classroom.

``He's just more alert,'' she says, and he dives into his work.

The up and down weeks continue until early December. Greg has a bad seizure at school, and, before anyone can catch him, he pitches forward.

``He fell face-first into the desk,'' Lynne says on the phone one afternoon. ``Oh, hold on, he's having a seizure.''

The phone thumps down, and there is an eerie silence and muted whispers for about 30 seconds.

``He's OK now,'' Lynne says, her voice tight as she returns to the phone.

Dr. Michael Vigoda, an anesthesiologist at MCG, checks on Greg as he prepares to get in for yet another surgery, this one to implant the vagus nerve stimulator, which his doctors and parents hope will block his seizures. JEFF JANOWSKI/STAFF

Within a week, Greg is back at MCG for a checkup, a small red mark under his left eye as he sits in the waiting room.

Dr. Park has ordered an Electroencephalogram to see what is causing the sudden wave of violent seizures.

Christmas is now a couple of weeks away, which doesn't escape the notice of EEG technologist Elizabeth Goodwin as she lays Greg back on the table and fits a red hat with electrodes onto his head.

``What do you want for Christmas, Greg?''

``A knife,'' he says quietly.

``A knife!'' Dennis says, chuckling. ``Where did that come from?''

Greg grins. He later amends his answer to: ``A bike.''

A poster over the bed reads: ``Hold on to your dreams. Your day will come.''

With the lights dimmed, the only sound in the room is the hum of air conditioning. Greg counts slowly to 10 as Ms. Goodwin watches the wavy lines moving across the monitor. She hands him a pinwheel, but he tires quickly and has to be coaxed into blowing on it.

``Close your eyes,'' she tells him. ``We can see your brain waves better if your eyes are closed.''

The 22 squiggly lines on the monitor become frantic and thick as he blinks his eyes open. But there is nothing else there. She tries a strobe light that flashes off Greg's pale face, trying to trigger a reaction. But there is nothing.

As she removes his hat, she looks puzzled.

``Where's your scar?'' she asks Greg, who just grins and looks down. ``I can't even feel it. I guess that will be your secret.''

As he arrives at the nurses' station at the outpatient clinic, Greg is already taking off his shoes. He is a quarter-inch taller and 5 pounds heavier than he was at his last visit, in September. But otherwise he is unchanged, except for a reindeer pin on his shirt.

``Nikki,'' he says shyly after his dad prompts him to say who gave it to him. Nikki, a schoolmate, is determined to be Greg's girlfriend, his dad says. Greg squirms.

Dr. Park rubs Greg's head affectionately as he tells Dennis that the EEG was OK.

``Where the seizures are coming from now, I don't know,'' Dr. Park says. ``He has a left-side spike,'' or spark from that side of the brain, that could be starting some seizures. ``It could just fade away. How long it takes, we don't know.''

He suggests a new medication, Lamictal, with increasing doses for the next month. It will eventually replace the drug Greg started taking right after surgery, Tegretol.

Outside the clinic, Greg is pulling his dad's hands, urging him across the street to the hospital and up to the third-floor epilepsy monitoring unit.

``I want to see Kim,'' Greg says, referring to Ms. Luckey, one of his nurses.

``This is about the last drug he hasn't been on yet,'' Dennis says. ``We'll just have to see.''

Dec. 22

It could be because Christmas is just three days away, but Dennis' voice has a certain excitement that wasn't there before.

``Lynne's pregnant,'' he says. They had decided they would try for a fourth child but were waiting for Greg to get better. If it hadn't happened by summer, they were going to abandon the idea.

Greg seems to be getting better. And he gets the bike for Christmas.

March 14

If there was improvement, it has faded a few months later. Greg, who turned 11 in January, is off the Lamictal and back on the Tegretol, still taking three medications a day. The good days are still followed by bad days.

The Wests are considering another step: the vagus nerve stimulator, a small electrical device that will be implanted under Greg's collarbone. The device will send a shock at regular intervals to the base of brain in an attempt to stop a seizure wave from forming. Dr. Lee compares it to ``adding another medication, but without the side effects.'' If it works, it will allow the doctors to begin dropping some of the medication Greg takes. By e-mail, the Wests have been talking with other families whose children got the device. They know it is not a cure, Dennis says.

``It didn't make the seizures go away, but they're getting better,'' he says.

Greg is sitting in the deserted third-floor waiting room. His MRI is being delayed by an emergency, and his dad is filling the void.

``Tell 'em what Peanut did,'' he prompts Greg.

``Had babies,'' Greg says with his lopsided grin, and Dennis holds up five fingers.

``Lynne was hoping to get Peanut fixed, but...''

Lynne herself is now 4 1/2 months pregnant. Even though Greg's teacher, Mrs. Green, is a few weeks ahead of her, Lynne looks bigger, Dennis says. Every visit to the doctor's office carries a surprise. This time it is about Lynne.

``The doctor told her it's one of two things: Either you're showing more, or you're having twins,'' he says. It is hard to tell if he is smiling or grimacing. A scheduled ultrasound is a month away.

It is cold in the MRI room.

It takes a while to get Greg to quit squirming on the narrow track of the machine. His father, pockets emptied of metal, sits at his side. If nothing shows up in today's MRI, they can schedule Greg for the vagus nerve stimulator.

``Greg, are you ready?'' asks MRI technician Teresa Mills.

``Yes, ma'am,'' comes the faint reply.

``Are you cold?''

``No, ma'am.''

``Does this scare you?''

``No, ma'am.''

Then he is rolled into the machine, with just his legs sticking out.

The machine beeps like the sonar alarm on a submarine. The first set goes for six minutes, then Ms. Mills stops the machine.

``He was having a seizure,'' Dennis says from inside the room, still sitting at Greg's side. ``He was jerking his foot.'' He leans over and talks to Greg.

``You OK, Greg?'' Ms. Mills asks over the intercom.

``Yeaaah,'' comes the faint, syrupy answer.

Images of Greg's brain now come spinning onto the monitor in green and blue and red. As the brain tilts to the left and shows the top, a dark triangle appears on the right. As the scan goes deeper, layer by layer through his brain, the triangle on the right becomes a wedge -- a reminder of the removed brain tissue. But everything is fine.

Ironically, it was interest in the vagus nerve stimulator that brought the Wests to MCG. But then surgery appeared to be their best shot at a cure. Having done the surgery on the right, however, it would be too dangerous to try it again now that the seizures are coming from the left side, Dr. Lee says.

April 13

The Wests come to the top floor of the new MCG Children's Medical Center for Greg's pre-operation instructions. Standing in the hallway, Mom, Dad and Greg look loose. They have just come from Lynne's ultrasound in Camden. Greg gives a hard high-five, and Lynne smiles.

``Just one child,'' she says, ``a boy.''

Greg is animated as they go through the paperwork and get last-minute instructions. He has gained 6 pounds since December, and all of his pants are getting short, Lynne says. Greg is more interested in toy trucks than picking the flavor of the anesthesia.

``Root beer,'' he says absently. Then he's off again, wrestling a giant stuffed polar bear, lifting it and pinning it in the corner.

They move on to the Ronald McDonald House, where they will spend the night before the procedure. The wait before surgery this time is ``much easier,'' Lynne says as she watches Greg pick up a toy sword and walk around the room.

``Say your prayers,'' he says, pointing the sword and imitating a pirate.

His report card shows two ``excellents'' in physical education and music, the top grade for his kind of classwork.

``He did about the same as he's been doing,'' Dennis says. ``Everything's below grade level, but, you know, he tries real hard.''

Mack and Megan, his brother and sister, wanted to be with him now.

``Mack thinks Ronald McDonald lives here,'' Lynne says, laughing.

Greg looks puzzled. ``Where does he live, then?'' he asks.

April 14, 8:15 a.m.

Greg lies on the hospital bed under a white sheet, Bubba Bear back in his arms, waiting to be wheeled into the new operating room.

``I'm scared. Will you hold me close?'' Bubba drawls.

Click on graphic to view a larger version. ANDRES FERNANDEZ/STAFF

Tears brim in Lynne's eyes as she gives him a goodbye kiss. She stays behind in the room as they wheel him out. Dennis walks beside him down the hallway and into the operating room. As Greg is put under, his father gently retrieves Bubba and leaves.

Dr. Lee walks into the operating room just before 9 a.m. He draws a line on the left side of Greg's neck, in the natural crease that will help hide the scar. He draws another line on the left side of the chest. In 20 minutes, they become small, neat incisions.

``Let's have the tunneler, guys,'' Dr. Lee calls out. A metal rod with a plastic tube attached goes in through the cut in the chest and appears at the cut in the neck. Dr. Lee clamps the tube in place and pulls the rod out, leaving a passageway between the incisions. A lead wire with three coils goes into the tube and comes out at the neck. Using forceps like chopsticks, he begins to wrap the coils around the exposed nerve.

``It's like taking these metal springs and trying to wrap them around a wet piece of spaghetti,'' Dr. Lee says.

Off to the side is a laptop computer with a thing that looks like a hand-held scanner attached. Sandy Chernich, Dr. Lee's physician assistant, and Dr. Park work with the device, about the size of a pager.

An hour after he entered the room, the device is in, making a bulge under the skin. After testing to make sure it is on, the incisions are closed, and Greg is done.

``I'd like for this to replace at least one of his medications,'' Dr. Lee says outside the operating room. But he can't get over the progress Greg has made, even from the first operation.

``He acts like a kid now,'' Dr. Lee says. ``He smiles; he talks.''

Lynne is trying to smile when Dr. Lee finds them in the waiting room, but she is as pale as typing paper and her eyes are rimmed with red.

``I was a little nauseous,'' she says, now five months pregnant.

``Everything went real good,'' Dr. Lee says. ``They're getting him settled in there,'' in the recovery room.

``Good, thank you,'' Lynne says.

Inside the recovery room, she brushes Greg's hair into place with her fingers while his dad gently strokes his left arm from the other side of the bed. As Greg snoozes, Dennis takes a peek at the bulge on the left side of the chest under the gown.

``It's not like what I thought it would be like,'' he says.

``Will it go down some?'' Lynne asks.

``I don't think so,'' Dennis says. ``He's so skinny, it'll probably show.''

Lynne leans over him and tries to help pediatric nurse Brandy Carroway wake him.

``Greg, can you hear Momma?

``Yes,'' he says thickly.

``Are you sleepy?''

``Yes.''

``Greg, take a deep breath for me,'' Ms. Carroway asks.

``Greg, Greg, take a deep breath, come on now,'' Lynne says.

As his eyes flutter she smiles down at him.

``Greg, look,'' she says, brightly, trying to pump him up. ``You've got a magnet in you, see? In your chest?''

Greg lets out a big yawn.