Brain surgery allows teenager to live seizure free

Jenna Carmen, like many 15-year-olds, is looking forward to getting her learner's permit to drive. However, it was never a possibility for her until a life-changing surgery last year.

Since she was 4 years old, Jenna has battled to keep epilepsy from overtaking her life, but she began having as many as 50 seizures a day, which greatly impeded her ability to function.
"It was scary. I didn't know I was having a seizure," said the Unioto High School freshman.

In the beginning

Jenna was 4 and staying with her grandparents since her parents, Denise and Jeff, were at the hospital with her little brother, Jarod. The couple were working through the intricacies of Jarod's genetic mutation, cornelia de lange, which has a variety of attributes.

Denise recalled they had received a phone call that Jenna was not feeling well and while Jenna was being taken to the hospital, she had her first seizure in the back of her grandparents' car. Once at the hospital, Denise and Jeff arranged for Jenna to be taken to the hospital they were with Jarod.
"(The doctors) said it was probably the spike in fever, and most likely she would have no more," Denise said.

However, three weeks later, Jenna's older sister, Paige, ran out of the bedroom, proclaiming Jenna was "doing something crazy." An EEG was conducted and came back abnormal. At that point, Jeff explained Jenna was put on medication to control the seizures and doctors said she may "outgrow" them.

A few years passed before Jenna had another seizure which sent her to (Nationwide) Children's Hospital in Columbus for an MRI that showed a dead spot in her left temporal lobe.

"They said surgery may be an option some day. We thought, 'yeah, yeah, right,'" Jeff said.
The Carmens couldn't imagine the epilepsy getting worse.

Seizure daydreams

As Jenna grew older, her seizures began to worsen, but they weren't always noticeable like one she had at school in January 2006. She had left class to go to the restroom and never came back, Denise said. Eventually Jenna was located and ever since, the school worked to provide Jenna a "buddy" to ensure the same thing wouldn't happen again.

Jenna's classwork was erratic with her skipping lines of questions and coming home with no understanding of what was taught at school that day. Jeff recalled it taking hours to complete homework because he and Denise would have to re-teach the day's lessons.

"I kept going to school counselors saying, 'I don't know what is going on,'" Denise said.

It turned out Jenna was regularly having petite seizures at school no one noticed because she just trembled and looked as if she were cold.

"It was in the seventh grade when someone realized I was having a seizure," Jenna said.

In April 2007, Jenna was having at least 50 seizures a day, not counting non-clinical seizures, which don't manifest visibly.

"Basically, she was living her life in a daydream," Jeff said.

Jeff and Denise took her to Columbus for a 24-hour observation when a doctor came in very excited.

"He came in, 'She go to Cleveland. They do brain surgery. She be fine,'" Jeff said, adding they had trouble understanding due to his heavy accent.

Denise began crying which she said she thought upset the doctor who kept telling them this news was good.

An answer

In no time, the family was sent to the Cleveland Clinic, where Jeff said the brakes were put on so doctors could perform their own tests. During a nine-day stay, Jenna's seizures were stopped with a combination of three medications prescribed at peak dosage. Within a week, Jenna was back in Cleveland because she developed an allergic reaction to one of the medications. In another week, Jenna had a seizure.

Although the process to surgery usually takes more than a year, Jeff explained Jenna's complications with the medication sped up that process.

"They sent parent volunteers in who had children who had the procedure to talk to us," Denise said.
"We decided to have the surgery. Basically, it was the only thing left to do at that point," Jeff added.
However, the area that needed operated on was in the same area that controlled her speech -the left temporal lobe. So after much discussion, the surgeon decided to first do a procedure to map the brain. A square of Jenna's skull was cut out and her brain was hooked to a grid for two days so doctors could determine what areas controlled what parts of her body.

"He said there were 2 centimeters where he needs to cut and the speech," Jeff said, adding he was skeptical. "He said 'that's like a mile to you. That gives me all the room I need.'"

The surgery was done May 30, 2007, and Jenna was home in a few days.

"I thought something would go wrong during the surgery," Jenna said. "I was very upset because I had to shave my head ... When I got ready for school, I couldn't look at myself."

Aside from regaining self-confidence, a scary dream that she couldn't move, a brief loss of speech (around a minute) and regaining the weight she had lost since the cluster seizures began, Jenna's surgery has been a success. For the first time in her life, six months after the surgery, Jenna had a normal EEG.

"You see stuff like that on TV and you never expect it to happen to someone you know," said 17-year-old Paige, tearing up. "She's so brave. I couldn't even imagine going through something like that."

Jenna has now been seizure-free for 19 months and medication free for more than three months. Once Jenna hits six months without medication or seizures, the doctor will clear her to get her driver's permit. And as long as she doesn't have to take medication, she no longer has to worry about birth defects later on in life when she decides to start a family.

"A year (after surgery), we had a reunion (at Cleveland Clinic) and every doctor knew her by name. They called her the tiger because she was so brave," Denise said, tearing up.

"I was screaming on the inside," Jenna quietly admitted.

School also has become easier since she can now concentrate.

"It has changed her whole life. She's gone from a kid who struggled with everything, never being able to drive, to a typical 15-year-old," Jeff said.

Rarely known miracle

Although the surgery was a success for Jenna and many others who have it, too few patients are having it according to a recent study published in the Journal of the American Medical Association. Each year, Cleveland Clinic performs between 250 and 300 of the temporal lobe procedures, however an editorial in the journal indicated not even 1 percent of the 100,000 estimated patients eligible are having surgery.

The study estimates people with temporal lobe epilepsy, the most common form, who have the procedure would not only improve quality of life, but also increase life span by about five years. However, sometimes it's a fight for parents to get the physician to recommend a child for testing, Jeff said, recalling the story of a man he met in Cleveland.

According to the study, patients whose seizures cannot be controlled by medication should be evaluated for the procedure even before all medication options are exhausted. Between 20 percent and 40 percent of people do not respond to drugs and of those who receive the surgery, two-thirds of patients become seizure free.

(Ison can be reached at 772-9367 or via e-mail at jison@nncogannett.com)