How Far Would You Go to Save Your Health?

By Stephen Fried
Glamour Magazine
Reprinted with Permission

When Stacie Sharp's seizures spun out of control, she signed on for one of the world's scariest surgeries.
Read and decide: What would you have done?

Stacie Sharp sits up in her hospital bed, her big round eyes still adjusting to the light, her head wrapped in yards of gauze with thick wires protruding from the back, leading to a control panel on the wall. The setup makes her look like the Bride of Frankenstein under a salon hair-dryer. She is woozy because she just had a seizure. Normally that would be cause for alarm. Today, however, a seizure is just what the doctor ordered. In fact, her neurologist hopes she will have an even bigger, more debilitating seizure as soon as possible.

Stacie is 31 and has spent much of the past seven years trying to prevent these crippling, embarrassing neurological explosions and get control of her life. But the medications—which make her dopey, stunt her libido, cause dramatic mood swings and have added 40 pounds to her once-athletic frame—no longer work very well against the lightning strikes inside her brain. After several seizure-related auto accidents, it is no longer safe for her to drive, which has totally changed her life. Her fiancé, Bruce, now has to take her everywhere. And she can work only part-time at the Italian specialty food company that has employed her throughout her medical ordeals.

Most important, Stacie and Bruce have decided to put their plans for marriage and children on hold until her medical condition improves.

"All I want is the normal, active life I've been dying to live," she says.

To get it, Stacie has decided to undergo one of the most extreme elective procedures in medicine today: a lobectomy. Neurosurgeons open the skull and literally cut out the sections of the brain where seizures "focus." In Stacie's case, she'll actually be woken up in the middle of the surgery so the neurosurgeon can talk to her and test her—it's the only way to avoid cutting out, say, her ability to speak, or crucial motor skills.

While voluntary removal of one or more lobes of the brain is certainly radical, it is the last, best hope for many of the roughly 600,000 Americans, half of them women, whose lives could be devastated if their seizure disorder (also known as epilepsy) does not respond to traditional medications.

Still, the fear factor is clear, which explains why only 10 to 20 percent of the women who could be helped by the procedure have it done. The New England Journal of Medicine laments that "in all of modern medicine, few generally accepted therapeutic interventions are as underutilized." Stacie belongs to that brave-hearted minority. Her desire for a future with Bruce far outweighs her anxiety about the surgery and its considerable risks.

Stacie and her doctors have agreed to let me shadow her case and even be in the operating room during her surgery. While I'm fascinated by the procedure, the real drama is in witnessing just how far a woman is willing to go to get her life back, to rescue herself and her relationship from chronic illness.

In the epilepsy care unit of Jefferson Hospital in Philadelphia, Stacie is joined by five other patients who have electrodes on or surgically implanted in their skulls. They are all waiting to seize—one woman has been waiting for six weeks—so the electrical storms in their brains can be recorded and mapped in preparation for surgery. I ask Stacie if there's anything she can do to encourage the seizures, anything she's observed over the years that sets them off. Stress, she says.

"Actually, it's a shame my grandmother and mother aren't here visiting," she quips. "They argue so much, I'm sure I'd have one."

While Stacie is flip about the surgery, the risks, even the electrodes in her brain, Bruce appears worried enough for both of them. Seven years her senior, Bruce is small and wiry, with a look on his drawn face that reminds you that almost every time Stacie loses consciousness during a seizure, he is there, eyes wide open, watching the whole thing. And now he must watch her go through this procedure. The first time he saw her after her long, luxurious hair had been shaved—to ready her for brain monitoring—he burst out crying.

They've been together for nine years, since just after the seizures began. They were set up by Stacie's mother, who owns a deli in South Jersey just down from where Bruce owned a children's clothing store. An honors student who lived with her mother and grandparents after her father left the family, Stacie had gone right to work after high school. When she met Bruce, she had an active life—outside her job, she worked out and swam regularly, and was a die-hard member of her bowling league.

At 22, Stacie had her first seizure. "I was at my mom's watching TV," she recalls, "and then all the sudden my eyes started to roll back and my tongue came out and I was gone." Her seizures generally last five to 10 minutes: Sometimes she just zones out, but other times she bites down on her tongue, her hands vibrate and she grabs at herself. Initially, medication kept the frequency low, maybe five or six episodes a year, and never at work.

Then, in April 2000, Stacie suffered a severe head injury in an accident so bizarre it's hard to describe it with a straight face. She was in a ladies' room at an indoor farmers' market when an SUV barreled through the exterior wall and into her. "I went to the bathroom," she says, "and a car came through the wall and hit me, OK? So that's why I have to get the surgery." Stacie suffered a severe concussion, and after that she began seizing at least five or six times a month, and sometimes even twice a day.

She sees the surgery as her last chance. The seizures have robbed her of so much of her normal life—she can't go anywhere without fear of seizing, her memory is deteriorating—that having part of her brain removed seems less risky than not having it done. "I have nothing to lose and everything to gain," she says. "If it works, my seizures will go away or will be very limited. They'll wean me off the medication. The mood swings will go away. Within a year I should be able to get my driver's license."

She looks over at Bruce, who is sitting next to her hospital bed. "And I want to get married," she says excitedly. "I want to get married too, Stace," Bruce replies with cautious optimism.

Facing surgery, unafraid

It takes two weeks in the hospital, but Stacie finally has all the seizures her doctors need. After her electrodes are removed and she is sent home, I go to visit her neurologist, Dr. Michael Sperling. He is a tall, slim man with wire-rim glasses and a calm way of explaining even the most troubling or complicated information. He tells me that this lobectomy procedure has grown more popular in recent years — because of improvements in neurosurgery (the success rate for the procedure is now 65 to 80 percent), but also because researchers have discovered that elective brain surgery is safer in the long run than having uncontrolled epilepsy. "People with uncontrolled seizures have a dramatically increased risk of dying—from all causes," Dr. Sperling explains. "And that's especially true for women."

We talk about Stacie, whose case is especially complex because the tests show that her seizures focus in two different places in her brain. They are primarily in her left temporal lobe, just behind her left eye. This lobe is the most common area for seizures and generally the safest to remove because it contains tissue responsible for learning and creating memories, something patients who get the surgery must be willing to risk. But there's also activity in the back of the temporal lobe and even farther back in the occipital lobe. Both are laced with critical brain tissues that Stacie needs for speech and vision. Lose those and she could be left unable to speak or see normally.

So her doctors plan to wake Stacie up in the middle of her brain surgery. They will set up a slide projector in the OR. And, while she holds as still as possible, they will ask her to identify words and images on the wall while doctors touch certain tissues with a probe. They will literally see if her speech or comprehension is affected by electrically stimulating each spot. That way they'll know what is safe to remove.

I ask Dr. Sperling how much they will cut out. "Well, that's the tricky part," he says. "You'll see when you're in the operation room, it will seem like we're improvising, flying by the seat of our pants, and we are."

He leans forward. "Of course, I could guarantee you a 100 percent cure rate," he says, "if we take out the whole brain."

A little neurosurgery humor there.

Unexpected complications

Early on a Monday morning, Bruce stands in the entryway of the hospital waiting room smoking cigarettes and pacing. He's a wreck, just like he was last night when he and Stacie went out with friends for a kind of last supper.

But Stacie is ready, exuding a "let's do it" attitude as she is wheeled on a gurney toward the operating room. She seems more pumped than scared, like an athlete about to run a race she's been training hard for. Even though she already had a small seizure this morning, she's back and yakking with the nurses about her new shaved hairdo ("I'm what you'd call a Sinéad O'Connor") and her favorite restaurant in Philadelphia's nearby Chinatown—Charles's, where she and Bruce love the wonton soup and Szechuan chicken.

While her doctors prepare the general anesthetic, Stacie is laid out flat, her arms extended crucifixlike so they're easily accessible to IVs. When everything is stuck in, they roll her onto her right side and drape her with a sheet. "I can't wait," is the last thing I hear her say before they put the mask over her face.

As they continue prepping Stacie, I go over the surgical plan with the doctor who will actually do the surgery — 32-year-old Ashwini "Ash" Sharan, the new young surgical stud of the Jefferson neurology department, who spiffs up his drab scrubs with a bright, tropical-print surgeon's cap. Meanwhile, Stacie starts moving again, and the look on the anesthesiologist's face lets us know he is not happy. She's not completely under. In fact, he thinks she might be having another seizure, so they increase the anesthetic Diprivan to halt it.

"Stacie, you asleep?" Ash calls out.

"Not yet," she murmurs. They keep giving her more anesthetic and she finally seems out, but before Ash puts a hypodermic needle directly into her skull he tells her, "Stacie, we're giving you the numbing medication." He gives small injections along the lines they have drawn on her shaved head in magic marker. Once she's numb, they staple toweling directly onto her skull around the area where they'll cut, which is, as Ash notes, about the size of a flattened chicken breast. As he begins cutting just the skin, which actually pulls away almost exactly like that of a chicken breast, he chats about replacing his car battery, doing his taxes, a recent ski vacation. Stacie's skull is now entirely exposed, and at 9:26 A.M., nearly two hours since she was first wheeled in, the nurse begins revving up the drill. The young surgeon puts on a pair of thick, Buddy Holly–looking magnifying glasses with a small halogen light snaking up over the top.

Just as he is about to touch the drill to her head, Ash turns to me. "Isn't it amazing that people go through this?" he asks, sounding truly incredulous. "Isn't it amazing how bad it must be for them that they would do this? My father almost passed out when I told him about this surgery. My mom just looked at me and said, 'Please be careful.' I said, 'OK, Mom.'"

With that, he lowers the spinning drill bit into Stacie's skull. There is something so shocking about seeing such a personal invasion, yet I can't look away. Little chips of bone dance up off the highly lit area, and the drill cuts until a large piece of the skull can be lifted off. Once he peels back the dura—the thick tissue just beneath the skull—Stacie's brain is in full view, looking like every anatomy book drawing or squishy brain toy I ever saw. Ash explains that he's going to lop off the left temporal lobe, then remove the hippocampus as well—very carefully. "Five millimeters in either direction," he cautions, "and she's not waking up."

What will cutting this out do?

"I'm taking away about 20 percent of her short-term memory," he explains. What about long-term memory? "We don't know where anyone's long-term memory is," he says. "I know I don't personally know. My bet is that it's repetitive, that there's a backup copy somewhere in the brain."

He begins removing Stacie's temporal lobe. Much of the tissue looks scarred and rubbery, and Ash says that means it isn't working very well anyway. By 11:15 A.M., the hippocampus is gone as well, and it's about time to start waking Stacie up to get her responses. The anesthesiologist cuts back the drip of Diprivan into her bloodstream—without it, she should start coming around in a few minutes. (The area around the surgery itself will still be numb.)

But 15 minutes pass, and Stacie still doesn't wake up. Nobody is panicking yet, though the anesthesiologist is bouncing on the balls of his feet as he shakes her hand. At 11:33 A.M., she appears to respond slightly, and they shout at her to open her eyes but stay very still. Dr. Sperling arrives to help with the probing and asks Stacie to squeeze his finger. She doesn't.

An hour later Stacie is still out. Dr. Sperling says he's never seen this happen during an awake procedure before. "I told you sometimes we have to improvise," he reminds me. With the procedure temporarily halted, Stacie's open skull is covered with a towel. Many of the nurses and doctors, suddenly with time on their hands, begin to chat. One nurse, who has just returned from maternity leave, is showing her baby pictures.

Dr. Sperling and Ash are huddled next to the EEG machine, which measures electric activity in the brain, trying to figure out what to do next. All sorts of Plan B's are discussed. Finally they decide that even without Stacie's responses, Ash will remove some obviously burned-out tissue but stay away from the areas known to control motor and speech function. And they'll have to hope that will be enough to stop her seizures.

He uncovers the brain and does some more scraping. And then he uses electrodes to literally search by hand for "hot spots" that show abnormal activity. Finally the doctors are satisfied that they can't find any more spots of obvious seizure focus. Ash is certain, the way only surgeons can be, that the procedure is a success and what they removed will be sufficient. Dr. Sperling concurs, suggesting that perhaps forces bigger than the both of them simply didn't want them to cut any more.

Dr. Sperling takes a look into Stacie's cranium for the last time. "This is a very normal-looking brain," he announces. "That's good, I guess."

Ash walks over to a table nearby and picks up a piece of Stacie's skull from the bowl of liquid it has been soaking in. He carefully sews the flap of dura back together, then replaces the "skull cap" and screws it all back into place.

As I leave the operating room, after more than six hours, I can hear the nurses counting all the instruments. They want to make sure that nothing was left behind.

Waiting in fear

Two days later Stacie is still asleep, and Bruce is losing it. He's been sitting next to her bed almost constantly since she got out of surgery Monday afternoon, waiting for any kind of signal from her. Normally no matter how out of it she is after a seizure, she can make brief eye contact or squeeze his hand to let him know she's still in there. Now it's Wednesday, and there has been no sign. The only thing that's changed is the shape of her head, which is so swollen and discolored that it's painful to look at. When he just can't look anymore, Bruce anxiously paces the halls of the NICU—the neurological intensive care unit, where all the "cranies" go after surgery. Or he calls Stacie's mom with another non-update.

"She still ain't moving," he says grimly. And then he returns to his vigil.

By late Wednesday afternoon, Bruce has had enough. Exhausted and confused, he releases Stacie's hand and stalks off down the hall searching for the neurosurgeon. He wants some answers, now.

Bruce finds Ash talking to another family and waits impatiently for them to finish. Then his panic just pours out. "You know, I'm in a pretty radical state here," he says. The doctor reassures him that all of this is normal and predictable, even the grotesque swelling. Bruce just needs to calm down and be patient.

He goes home and gets a few hours of sleep, but when he returns Thursday morning, Stacie is still out of it, completely unresponsive to him. He holds his fiancée's hand for a while and then heads downstairs to get some lunch.

When he gets back to the NICU, a nurse looks at him reassuringly. "She's awake now," she says. And when he gets to the room, he finds Stacie sitting up in bed, sipping some juice and trying to talk.

"I'm OK, I'm OK," she keeps saying, with tears in her eyes. And when he finally believes her, she tells him that she's been dreaming, dreaming since the surgery, dreaming about just one thing: eating. She's ravenous. But she can't tell him what she wants; the words just won't come to her. It's the first sign of aphasia, something the neurologists warned might happen, a condition that prevents victims from saying all of what their brains are thinking. But Bruce is pretty sure he knows what to get her.

An hour later Stacie is slurping a wonton soup from Charles's. The smell of Szechuan chicken fills the room.

Worth it, or not?

When I visit Stacie and Bruce several weeks after the surgery, in the homey, plant-filled twin-house they share in the northeast section of Philadelphia, relief and even a sense of cautious optimism have set in. Stacie is stretched out leisurely on the couch watching TV when I arrive, her head covered with a blue bandanna, and Bruce seems to have unclenched. We sit down around their dining room table to talk.

Stacie says she remembers the doctors waking her up during the surgery, but found she couldn't talk. She also remembers that once she came around after the procedure, the hospital discharged her very quickly.

"Stacie getting brain surgery and coming home five days later was a shock to me," Bruce admits. But once it was clear there were no postoperative complications, she could take all her medicine at home. And it is cozier to be back in her own environment, including a bathroom so jam-packed with images of undersea life that it's like brushing your teeth in an aquarium.

But the swelling and tiredness still annoy her, and the aphasia and the loss of some short-term memory are disorienting. As we talk, it's clear that she is gamely attempting to gab her way past the deficits. She'll be speaking normally, and then her train of thought suddenly gets derailed, and she reverts to a phrase she knows at least sounds hopeful. "Knock on wood," she keeps saying. "It's just a matter of time. Knock on wood."

Nearby is a small side table crowded with framed pictures of family members, plus a few of Bruce and Stacie in various eras and hairstyles. I look closely at one very old photo, taken not long after they first met, before Stacie's seizures became severe. She looks slim and innocent, with long, flowing dark hair. She hopes she can be that person again. If she can stay seizure-free for the first year after the surgery, she'll be well on her way.

A changed life

A year later Stacie comes walking into that same dining room and I hardly recognize her. She is smiling, really smiling. She has hair—short and stylishly streaked. And she is at least two sizes smaller. I ask her and Bruce what's been happening over the past 12 months.

"The biggest thing that happened is that I got my license back, I'm driving again," she says, the words tumbling out much more quickly than in our previous conversations. "I'm back at work full-time. And I'm starting to be able to go out and see friends and do normal stuff."

Bruce interrupts, "Stace, what else?"

"Oh," she says, "I haven't had a seizure."

"That's correct!" he says. "That's what I wanted to hear!" They share a conspiratorial grin.

While she has now been seizure-free for more than the requisite year, she is still on a very high dose of antiseizure medication. But Dr. Sperling has promised to start weaning her off it by the end of the year. While she and Bruce have put off their actual wedding ceremony until fall 2005—so they can save up enough to do it right—Stacie doesn't want to wait any longer to start trying to have a baby. At first Dr. Sperling told her he preferred it if patients stayed on medication for five years after the surgery.

"I told him, 'Are you kidding? By then I'd be 38, and Bruce would be, like, 45!'" she exclaims. "'There has to be a way to wean me off sooner.' He just looked at me and smirked and said, 'Sure.'"

Stacie hasn't had seizures, but the transition to normal life hasn't been without its problems. While some of the aphasia has passed, she still has substantial deficits in her short-term and long-term memory. She and Bruce cheer every bit of progress.

"The thing that came back to me first was music, because I love music," Stacie explains. "I'd hear a song, know all the lyrics but not remember who the group was. Dr. Sperling told Bruce and I that I just had to work on thinking it through. And, in most cases, that is now starting to work."

"The other day," Bruce says, "she walks up to me and says out of nowhere, 'It was the Who, right? The Who!' And I realized it was coming back." But her memory is far from recovered, her moods can still be perilous, and she's trying to teach herself more patience. She also struggles with the fear of seizing again.

"I think I'm more afraid to have a seizure now than before the surgery," she admits, "because there's so much at stake. I'm still not secure with this. Before the surgery I used to always say to Bruce, 'How can you stand to stay with me and take care of me, I'm so sick?' And I still think that sometimes, God, how can he stay with me?

"He still always says the same thing. He says, 'I'm here because I love you.' He holds my hand and says, 'If I was gonna go, I would have gone a long time ago.'"

I ask her what has been the most amazing thing that has happened to her since the surgery. She sits quietly for a moment, searching the recesses of her brain. Then she turns to me, eyes wide open, and says, "Well, actually, nothing. Nothing happened this year. It was just normal life. And that's the most amazing thing."

Glamour contributing editor Stephen Fried, author of "The New Rabbi," teaches at Columbia University Graduate School of Journalism.