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Archive for Sunday, January 21, 2001

Holding on to hope

Lawrence family escalates its battle against epilepsy

January 21, 2001

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Meredith Leary's scalp maps out her decades-long journey to find something that will ease her epileptic seizures.

A U-shaped scar was created in 1989 when surgeons entered the top of her skull to slice a band of nerve fibers between the two hemispheres of her brain. The cut quieted her violent convulsions.











This story is part of a series about Meredith Leary's epilepsy and research at Kansas University Medical Center.The Stories:1st Story: Holding on to hope2nd Story: Cutting through darkness3rd Story: Math may loosen eplispsy's grip4th Story: Tears, fears and healing5th Story: Epilepsy seizes a pilot's promising career6th Story: Moving on in life7th Story: Pilot Club takes up Meredith's torch

A horizontal cut near her hairline in 1991 let doctors remove a portion of her left temporal lobe. That reduced the strength of her seizures somewhat.

Another hairline scar appeared in 1998 when surgeons returned to remove even more of her brain.

Now fresh wounds are healing, wounds symbolizing the possibility of a brighter future for the 38-year-old Lawrence native and other people with epilepsy whose seizures can't be controlled by medication or surgery.

In December, small electronic probes were sunk deep into Meredith's brain as part of a research study at Kansas University Medical Center. Led by Dr. Ivan Osorio, medical director of the Comprehensive Epilepsy Center, the study is trying to determine whether electrical stimulation of the brain can block the seizures.

Osorio and his colleagues are the only ones in the world doing this kind of research, and Meredith is the third person to undergo the complex procedure.

If the procedure is successful, it would mean that for the first time in a quarter-century a day will pass without Meredith's body being racked by as many as 40 seizures. She would be able to drive and hold a full-time job. She would be able to go to a movie or on a shopping trip without wondering if she'll be visited by "Edgar," the nickname she gives her seizures.

And, if the procedure is successful, it would mean that Norman and Norma Leary, Meredith's devoted but aging parents, can let go of their ever-present worry about the well-being of their daughter after they are gone.

So far, the journey hasn't been an easy one.

Meredith's forearms are bruised from IVs and needle sticks. Her silky, brown hair has been shaved off. She has been over-medicated, causing repetitive vomiting.

Emotions have run high and dipped low, and at times doubt has cast a long shadow.

The first time

Meredith remembers with acute clarity what she believes was her first seizure.

She was in her sixth-grade reading class at Kaw Valley School. She was reading aloud, and the words simply stopped coming. Her teacher asked her to continue. Meredith heard the request, but she couldn't respond. Her lips couldn't form words. Her hands couldn't turn the pages of her book.

Meredith Leary, left, and her mother, Norma Leary, react to news
that the date for the first of three brain surgeries at the Kansas
University Medical Center has been moved up, and they have only one
day to prepare for a possible three-week hospital stay. Meredith,
38, heard the news shortly after having a mild seizure that evoked
involuntary crying and left her face flushed.

Meredith Leary, left, and her mother, Norma Leary, react to news that the date for the first of three brain surgeries at the Kansas University Medical Center has been moved up, and they have only one day to prepare for a possible three-week hospital stay. Meredith, 38, heard the news shortly after having a mild seizure that evoked involuntary crying and left her face flushed.

After the seizure passed, Meredith dashed into the hallway with her teacher following.

"She asked me what was the matter," Meredith recalled. "I said, 'I wish I could tell you, but I don't know myself.'"

When Meredith re-entered the classroom, her classmates were staring at her.

"They watched me go from the door (of the classroom) to my desk," she said. "That really bothered me. I felt bad, and I felt embarrassed."

The seizures continued, and their intensity grew.

Meredith remembers waking up at Lawrence Memorial Hospital more than once, after her frightened parents had rushed her there because she had gone into severe convulsions.

But the seizures would end as quickly as they had started, and hospital staff would send the family back to its rural Lawrence farm.

Demanding an answer

Then one night a couple of years after the reading class episode during a bad storm that had knocked out phone lines in the area the convulsions returned.

"Dad went to Grandma's house and knocked on the window to wake her up and to get her to stay with my (older) sister, Denise," Meredith said, recalling a story that has been told and retold over the years.

Meredith's body had stiffened and weighed more that it should when her father lifted her and carried her to the car for another hurried trip to the hospital. This time, her father, desperate to know what was happening to his 13-year-old daughter, demanded Meredith be admitted.

The first in a series about Meredith Leary's epilepsy and research
under way at Kansas University Medical Center.

The first in a series about Meredith Leary's epilepsy and research under way at Kansas University Medical Center.

The teen was transferred from Lawrence Memorial Hospital to KU Medical Center for testing and then back to LMH. That was where her parents were told Meredith had epilepsy.

"When Meredith came down with it," Norman said, "I would have sworn we were the only family west of the Mississippi to have it. It's like a death in the family. People don't know what to say, so they don't say anything."

Epilepsy isn't easy on a child particularly when you're 13 and few people know what you're going through.

Medications were prescribed, usually high doses that made Meredith lethargic.

Epilepsy first reared its head with Meredith when she was a
sixth-grader. "I would have sworn we were the only family west of
the Mississippi to have it," her father, Norman Leary, said,
referring to the diagnosis.

Epilepsy first reared its head with Meredith when she was a sixth-grader. "I would have sworn we were the only family west of the Mississippi to have it," her father, Norman Leary, said, referring to the diagnosis.

"I would doze off in class. I was in another world," she said. "The teachers would ask me questions and I couldn't answer them (because I was having a seizure). They'd scold me because I wasn't paying attention."

Meredith was absent a lot because of illness and doctor appointments.

"I would flunk tests. I had to stay after school to work on my classes," she said.

High school was no better. Each day, she made the walk to a "learning class" to get extra help with her studies.

"It upset me, because here I was already knocked down and I was trying my best," she said.

Meredith remembers bringing home a report card with mostly C's and D's. She handed it to her mother, told her she didn't like the grades and apologized for them. Her mother responded that C's and D's for Meredith was like A's and B's for other students as far as she was concerned.

"That made me feel good for a couple of minutes," Meredith said, "but then I told Mom I wanted to be able to get A's and B's in everything."

Dreams of driving

Equally disappointing was watching her sister and classmates learn to drive. Meredith wanted to climb behind the wheel of a car, too. But she knew that before she could get a driver's license, she would have to be seizure-free for a year. The chances of that happening were slim to none.

"I had dreams about driving a car," she said. "I'd have the radio on and I'd be driving down the road and then I'd wake up."

Meredith said she had a couple of friends in high school; one of them had a sister with epilepsy.

"She could understand me," Meredith said. "If I had a seizure, she wouldn't say anything because she knew about them. She'd let them pass and then we'd start talking again."

But other students weren't so kind. Those memories still hurt.

"I was popular because I was the one kid with epilepsy, and I was unpopular because no one wanted to hang out around me," she said, fighting back tears. "People thought I was contagious. I tried to explain to them that I wasn't but it just went in one ear and out the other.

"From seventh grade through high school, I wanted to quit school, but I didn't say anything to Mom or Dad because I knew what their answer would be."

Facing the real world

Meredith thought that after she graduated from high school the hurtful remarks would stop.

She was wrong.

The light of Meredith's life is her Maltese dog named Heidi.
Meredith showers the dog with affection and an occasional treat,
toy or new sweater.

The light of Meredith's life is her Maltese dog named Heidi. Meredith showers the dog with affection and an occasional treat, toy or new sweater.

Meredith enrolled at Highland Community College, a small two-year school near the Nebraska border. She wanted to learn a skill so she could work at a good-paying job.

But college life wasn't all it was cracked up to be.

"I stayed to myself because people didn't like the way I was," she said. "I stayed for a year, and then I came home."

A short while later, her mother encouraged her to enroll at Platt College in Topeka, where she could take a nine-month course to learn secretarial/ office skills. Meredith moved to Topeka and enrolled.

"I passed all the classes but one typing," Meredith said. "I typed 35 words a minute and I had to do 60 words a minute. I tried to explain I was on medications and they slowed me down. The teacher said that was no excuse."

Because she failed the typing class, Meredith did not receive credit for the course or the school's help in finding a job.

So Meredith set out on her own. She watched the newspapers for job openings and would call to try to set up interviews.

"I was honest with them and told them I was on medications for epilepsy, and immediately it was like, 'We don't need any help,'" she said.

She landed a part-time job in Topeka, and after 10 days was fired. She asked her supervisor what she had done wrong. The response: "You have epilepsy."

Today, Meredith works eight hours a month filing papers at Independence Inc.

"When I was living in Topeka, I decided I had two choices: Either I could think positive and go about my life, or I could think negative and give up. I've seen people with epilepsy give up. I'm not going to give up."

"I can see and hear everything that goes on around me. But if you'd ask me a question, I can't answer; or, maybe when I'd try to answer, all I'd be able to do is repeat the same word. It's like I'm frozen."

Meredith Leary, explaining what happens when she's struck by a seizure

'A continuing saga'

For the past 25 years, the Learys have searched for the right medication, a new surgery, a possible cure anything to make the quality of their daughter's life better.

They have sought help at St. Francis Regional Hospital in Wichita, Baptist Memorial Hospital in Memphis, Menninger Clinic in Topeka and KU Medical Center.

"It's been a continuing saga," her father said.

Today, a combination of pills, recited like a litany and taken in several doses each day, helps control Meredith's seizures. But medications over time damage the body. Some epilepsy medications cause tooth decay; others can damage the liver or cause overgrowth of body hair.

In Meredith's case, the pills she swallows create a slowed-down effect. Her speech and walking often seem sluggish and labored.

"The side effects of her medications are lethargy, sleeplessness, depression and suicidal thoughts, weight gain, extreme tiredness and exhaustion, disorientation and loss of bladder control," her mother said.

When Meredith has a seizure, those around her might notice a grimace, spontaneous crying, fluttering eyelids, imbalance or a brief loss of consciousness.

What Meredith sees and feels is quite different.

"I can see and hear everything that goes on around me. But if you'd ask me a question, I can't answer; or, maybe when I'd try to answer, all I'd be able to do is repeat the same word," she said. "It's like I'm frozen."

She often feels a tingling sensation similar to the buzz one gets when a finger gets too close to an electrical current. The sensation runs from her head to shoulders, and sometimes to her waist and hands.

After the seizure, she is always tired and frequently has a splitting headache.

The worst part: She never knows when a seizure will hit. She can't sense that they're coming, and she can't do anything to prevent them.

"When I come out of a seizure, I feel uncomfortable because people are looking at me," she said. " I've actually had people sit there and point fingers at me, or laugh at me."

On the left side of Meredith's neck is a vertical, three-inch scar more evidence of her journey to find something to stop her seizures.

In addition to slicing the nerve band and removing part of her brain, a vagel nerve stimulator a quarter-size device considered risky and unsuccessful by some doctors was implanted into her neck in 1992.

The device was removed in September at KU Medical Center in preparation for Osorio's research study. But after the surgery, Meredith's voice was raspy and she had to strain at times to get out a sound. Plus, the right side of her throat had become sore.

Not a litigating family

Dr. Al Merati, an assistant professor of otolaryngology at KU Medical Center who examined Meredith in December, said her left vocal cord was paralyzed, "probably from the surgery that removed the stimulator." The sore throat was caused by overuse of her right vocal cord in an attempt to compensate for the paralysis.

"It could be a legal problem," Merati said, "but I have to tell her."

Merati said surgery, speech therapy or an injection of collagen and gel to "fatten up" the vocal cord might repair the damage.

The Learys took the news in stride. They are veterans of the good news vs. bad news game. While some people might see the paralyzed vocal cord as reason to hire a lawyer and file suit against the hospital, the Learys say that just isn't their nature.

Instead, the Learys put their faith in doctors like Osorio who are doing everything they can to help Meredith. They keep their eyes on the bigger picture and tighten their grip on hope.

Monday: Meredith enters the hospital.

On thanksgiving Day with her family gathered at her parents' home,
Meredith enjoys Liverpool rummy, her favorite card game, with her
grandmother, Dorothy Leary, left, and her mother, Norma. Meredith
always keeps score and hates to lose.

On thanksgiving Day with her family gathered at her parents' home, Meredith enjoys Liverpool rummy, her favorite card game, with her grandmother, Dorothy Leary, left, and her mother, Norma. Meredith always keeps score and hates to lose.

Meredith wipes away tears after having a small seizure at the KU
Medical Center during preparation for a brain scan. Injecting a
liquid radioactive tracer into Meredith's arm is James Traylor,
supervisor of nuclear medicine at the medical center.

Meredith wipes away tears after having a small seizure at the KU Medical Center during preparation for a brain scan. Injecting a liquid radioactive tracer into Meredith's arm is James Traylor, supervisor of nuclear medicine at the medical center.

Bad news comes in a phone call on the day before surgery, when
Meredith is told that part of the medical procedure may not be
covered by Medicaid. The Learys later were reassured all costs
would be covered.

Bad news comes in a phone call on the day before surgery, when Meredith is told that part of the medical procedure may not be covered by Medicaid. The Learys later were reassured all costs would be covered.

Tape is placed across Meredith's head as a reminder to lay still
during a 45-minute brain scan. In the more than 25 years she has
lived with epilepsy, Meredith has undergone a number of surgeries
and other medical procedures. Staying still is not a problem for
the veteran patient, as long as a seizure doesn't occur.

Tape is placed across Meredith's head as a reminder to lay still during a 45-minute brain scan. In the more than 25 years she has lived with epilepsy, Meredith has undergone a number of surgeries and other medical procedures. Staying still is not a problem for the veteran patient, as long as a seizure doesn't occur.

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