Brain surgery is the answer to violonist seizure disorder

After Martha Curtis awoke from surgery that removed much of the right side of her brain to stop epileptic seizures, doctors handed her a violin and told her they wanted to test her ``music memory.''

Wearing a hospital gown, and with the right side of her head shaved to reveal a red, curving incision, Curtis began playing a violin solo composed by Johann Sebastian Bach in the 18th century.

``They kept saying they were worried about music memory and so I played solo Bach because it's the hardest stuff in the world to memorize,'' said Curtis, 51, of Squirrel Hill.

``What I didn't realize is, that's not what they meant. They were afraid I would open my case and not know what to do. Music memory is the memory that there's music in the world. They were wondering if I'd know what to do with a violin.''

Curtis spent a recent afternoon this month, National Epilepsy Awareness Month, playing the violin in her living room and telling her story. She lived with epileptic seizures while pursuing a career as a concert violinist. When the seizures threatened to silence her music, she turned to brain surgery in 1991.

``Most patients with epilepsy are usually controlled by medication close to 60 to 70 percent of patients,'' said Dr. Hans Luders, director of Case Western Reserve University School of Medicine's Department of Neurology. ``In Martha, it was not. Her case was unusual in that she is a highly performing artist. We did not want to take away the music.''

When Curtis was 3 and living in Ann Arbor, Mich., she suddenly began convulsing with seizures, which makes breathing irregular and starves the brain of oxygen. Her mother took her to a hospital, where doctors stopped the seizures with the barbiturate Phenobarbital.

Though no one is certain why, doctors think her seizures might have begun when she contracted measles.

``My mother started to hover this is an important thing for people with epileptic children to know mothers get scared and start to hover, which is an understandable response, but isn't helpful,'' Curtis said. ``My doctor said to her, 'Your child has a medical problem, but you could make it a very serious problem. Get out of her way.'''

So her mother, Anne Curtis, gave her daughter more freedom. She introduced her to the piano and dance lessons. When she was 9, Curtis picked up the violin.

``What that did was put me in an orchestra. And that's what saved me,'' Curtis said. ``You have 100 people on stage vibrating together. It's huge; it feels really good.''

The early exposure to music likely helped rewire Curtis's developing brain, shifting memory, emotions and spatial navigation to the undamaged, left side.

``I don't know if she would have survived at all without music,'' said Charles Castleman, a violinist who became Curtis' teacher at the University of Rochester's Eastman School of Music. ``She was at an age that she was capable of moving all those functions in the part of her brain that had gone bad to the other side.''

Music ultimately forced Curtis to pursue brain surgery.

She graduated salutatorian from the Interlochen Center for the Arts, a Michigan high school, and with honors from Eastman. But through it all she had small seizures, called simple partial seizures. As she learned later, they originated in a part of her brain that controls fear.

When the seizures started, Curtis felt a growing sense of dread that sometimes got so bad she panicked and thought something was coming over her left shoulder to attack.

Because of the seizures, she didn't think anyone would hire her as a full-time violinist. Instead she worked part time for three orchestras in northeastern Ohio and played concerts throughout the tri-state area.

She met her future husband, Walter Jackson, in 1983 when she was playing with a string quartet in Wheeling, W.Va. She knew she'd marry him after her first seizure with the quartet.

``I came to ... and there's this cellist smiling at me,'' Curtis said. ``No one had ever smiled at me after a seizure. No one. And he smiled at me and told me I had a seizure and it's OK now. ... I married him because he was that special that he could be OK when I wasn't.''

Jackson, who read about epilepsy after meeting Curtis, had learned what Curtis is striving to teach others: People with epilepsy should be treated normally, not feared.

``I knew that she was not, at that point, in a life-threatened state and that what she needed most was reassurance that she was safe in her surroundings,'' Jackson said. ``Showing anything else would have detracted from my ability to convey that message.''

In April 1990, Curtis had four grand mal seizures serious seizures that cause the body to convulse. She hadn't had one since she was 14. Three of the seizures happened on stage.

``Once I came to, my husband was right there with me, smiling,'' she said. ``I said, 'It's going to be OK, just give me my violin.' Even he wouldn't give it back to me. It just crushed me.

``By June, two months later, I was sitting in Cleveland Clinic with Hans Luders.''

A series of tests showed doctors that Curtis' seizures were originating in her right temporal lobe, buried deep in her brain behind her right eye. If doctors could remove that part of her brain, the seizures would stop. Her first and second surgeries didn't work. Doctors didn't want to do a third for fear they'd remove too much brain and paralyze her left side or blind her.

``The problem was, I couldn't be on stage unless I challenged my brain like this, unless I got rid of this,'' Curtis said. ``I had to put on the line the playing, in order to save the playing.''

The third surgery, almost three years after seizures forced Curtis off the stage, succeeded. With the front half of her right brain gone, her seizures stopped.

Curtis returned to Eastman to study with Castleman in preparation for a recital to restart her career. As she began performing again, she found herself sharing her life story with audiences, and illustrated it with a slide show featuring her brain scans.

Eventually it turned into a choreographed performance. She travels the world as an inspirational speaker, averaging 30 concerts a year.

Along with playing to audiences again, Curtis became a mother. After her husband's computer science career moved the couple to Pittsburgh, they adopted a daughter, Eliana, 8, and later a son, Ian, 6.

``It took a lot of involvement from me to have a life that I wanted to live. That's what's important,'' Curtis said. ``You have to call your own shots.''