Getting an edge
on epilepsy
A 'brain pacemaker' eases
a local woman's painful seizuresNew epilepsy center fills void
By Helen Altonn
Star-BulletinJulie Palu was driving home with a date from her high school prom in Santa Rosa, Calif., when a drunken driver ran a red light and smashed into their car broadside.
"My head went all the way through the window," she said. "The guy had been really intoxicated. There were 14 empty beer cans in the car."
Neither the drunken driver nor her date were injured, but Palu, then 19, had a severe head injury. She appeared to recover and "thought everything was hunky-dory" until she was 25.
Then an epileptic seizure suddenly upended her life.
Now 37 and a Hawaii resident, Palu only recently has begun to get some relief from seizures. The reason: a treatment for the brain similar to a heart pacemaker.
Neurosurgeon Marcus Keep performed the procedure for the first time in Hawaii last September at St. Francis Medical Center.
He put electrodes in her neck and a pacemaker-like battery under the skin of her chest to control her seizures.
Julie Palu is scheduled to speak to the Epilepsy Grassroots Support Group on July 7 at Paki Hale, 3840 Paki Ave. in Waikiki. SPEAKING OUT
The group, headed by Amy H. Mizuno and Claude Heon, meets there from 7 to 8:30 p.m. the first Wednesday of every month.
For information, call 737-5736.
"I'm doing a lot better," Palu said. "This surgery ... is not a cure but it's to help you out. It relieves about 50 percent of the seizures."
Palu said she continued to work as a hairdresser in California after the seizures began. Then they became "really bad," she said.
"It seemed no medicine was working for me. I'd fall down and I'd be like a fish out of water ... flapping around.
"Also, what I hate about my epilepsy is it takes away my memory. I don't remember a lot of things about my past. When I have a grand mal seizure, I black out. I wake up and I'm real tired and I don't know what happened a few hours before."
Palu is considered disabled, and she can't drive. She has only 65 percent mobility in her right arm "because I kept falling down on my right arm and ligaments in my shoulder blade kept popping out."
"I'd roll over in my sleep and my shoulder would be dislocated. After about 11 operations, they had to take about an inch out of my cartilage in the shoulder."
She eventually stopped hairdressing because she couldn't lift her arm all the way."My dad built a stand for me so I could be taller, but it just didn't work for me."
Palu had tests done on the mainland to determine what area of the brain the seizures were coming from. "But it was such a bad head injury, the epilepsy was coming from all over the head," she said.
Her parents had moved to Washington and she thought she might have surgery done at the University of Washington's epilepsy center, she said.
But she and her husband, Sione, moved to Hawaii in 1992 and her insurance wouldn't cover surgery in Washington, she said. "So the doctor treating me in Seattle suggested Dr. Keep, and my insurance would cover that."Palu said she used to have grand mal seizures -- with convulsions and loss of consciousness -- a couple times a week. She now has about two a month. "I get little ones once in awhile but nothing to worry about."
St. Francis neurologist Dr. Jordan S. Popper has been adjusting the amount of electrical stimulation in Palu's pacemaker to get the maximum effect against seizures, and minimize side effects.
"The level is as high as she can tolerate now," he said, explaining she's getting 30-second shocks every five minutes.
"You start getting used to it, then you don't notice it," Palu said. "If they amp me up, I feel a little bit of pain in my teeth, then I don't notice it. It becomes automatic."
"She's definitely better than she was," Popper said, with fewer headaches and fewer seizures.
"It's been a success and I would predict she would be down to one seizure a month in two to three months," he said.
Palu can't work because of her disability but said she reads extensively -- including everything on epilepsy.
She has a 9-year-old son, Stephen, and helps at Waimanalo Elementary, where she once had a seizure while participating in a reading program.
"The kids thought I was possessed by the devil," she said. "My son told them, 'My mommy is sick.' That's how he calls my epileptic seizures. He's really good about it -- just like a grown person who takes care of me."
She feels fortunate to be "the human guinea pig in Hawaii" for the brain pacemaker treatment. "Dr. Keep was the first doctor in Hawaii to do it," she said. "He's a wonderful man."
As for drunken drivers, she said: "I hate 'em like you wouldn't believe and I sure hate that guy" who turned her prom night into a nightmare.
"My pink swiss-dot gown got blood all over it," she said. "I went up to the guy who hit us and I punched him right in the gut and called him every name from A to Z -- and the cops didn't even stop me."
New epilepsy center fills void
By Helen Altonn
Star-BulletinDr. Marcus Keep, the first Hawaii neurosurgeon to do a "brain pacemaker" procedure here, has been busy with another operation -- unpacking boxes at St. Francis Medical Center's new Neurological Center.
The special facility to help patients with neurological illnesses houses a Hawaii Epilepsy Center created by Dr. Alan Stein, the state's only epileptologist -- a neurologist specializing in epilepsy.
"St. Francis has made a commitment to epilepsy diagnosis and surgery, which is facilitated by Dr. Stein," Keep said.
"Nowhere else on the island is there such a place for surgeons and neurologists to gather together. It's a beginning, but an exciting beginning. It's got real synergy."
Until now, island epilepsy patients who couldn't be adequately treated with medicine had to go to the mainland to identify the source of their brain seizures.
With the establishment of Stein's center, Keep said residents no longer have to fly to the mainland for a diagnosis.
"The one skill I offer is to do monitoring and look at seizures to make a decision (on treatment)," Stein said. "Patients all over the state are coming. Almost all neurologists are sending more difficult epilepsy patients."
An estimated 1 percent of the population -- about 13,000 residents -- have epilepsy, Stein said.
He said epileptic seizures are "like an electrical storm in the brain" with varied causes: injuries, strokes, infections and certain genetic factors. "In about half the cases, we never figure out what it is."
But with improved magnetic resonance imaging and Positron Emission Tomography scans, he said, "We can tell more and more frequently what causes it."
Keep said he relocated from the Physicians Office Building to work with Stein and be close to the St. Francis Gamma Knife Center. He did 14 of the first 28 treatments in that center, which permits radiosurgery for very small and critically located brain tumors.
Keep trained on the mainland for Vagus Nerve Stimulator surgery for tough epileptic cases, and performed the first Hawaii procedure on Julie Palu last September. "It's like a pacemaker for the brain," he said.Regular neurologists can treat about 70 percent of epilepsy patients with medications but about 30 percent have intractable seizures, Keep said.
Surgery can cure or eliminate most seizures for 90 percent of patients who undergo it, he said. But surgery is possible only if seizures are coming from a single place in the brain that isn't critical for speech, memory or motor functions, he said.
Palu's seizures couldn't be controlled with medications, and a full workup at a Seattle epilepsy diagnostic center showed her seizures were too diffuse in the brain for surgery, Keep said.
In such cases, he said, "The VNS is a wonderful thing."
A pacemaker-like battery -- about the size of three stacked silver dollars -- is inserted at the side of the breast, he said.
An incision is made in a natural crease of the neck, and electrodes are attached to the vagus nerve (which innervates inner organs) for electrical stimulus to control seizures, he said.
Stein said a number of patients are considering pacemaker implants and Dr. Jon Graham, Kaiser Permanente's chief of neurosurgery, is planning the first ones in that facility June 18 and 21.
There is "a lot of mystique" about epilepsy, noted Stein, formerly of the Johns Hopkins University Medical School in Baltimore and the Barrow Neurologic Institute in Phoenix.
"People think of grand mal seizures, people falling on the ground and frothing at the mouth," he said. But much epilepsy is far more subtle, he said, with seizures once or twice a year.
Even one seizure a year prevents a person from driving in Hawaii, he said. And patients don't feel safe to swim, surf or work at certain jobs, he said, stressing the importance of becoming seizure-free for an improved quality of life.
Although adequate control can be obtained with medication in 70 percent of cases, patients complain of memory loss from side effects, Stein said.
His workup to diagnose seizure disorders involves a hospital stay of about five to seven days. All brain activity is recorded on the computer and nurses monitor the patient by video. Medications are slowed or stopped to allow seizures to see where they originate.
Although he's just started his center, Stein is looking at expansion. He'd like to offer experimental drug trials and add a social worker to the program.
"I like to think of myself offering services to other doctors and neurologists," he said.
