By Fariba Nawa
December 19, 1997
Fremont — It took just six hours in the end to treat the disease that gave Cyndi Walentiny uncontrollable tremors for 20 years.
The Fremont resident had suffered for all her adult life from a nervous system disease that destroyed her career and prevented her from even eating or drinking without trembling. But in October, Walentiny went through a breakthrough operation that wired electric charges to her brain.
Approved by the Federal Drug Administration in August, the surgery treats patients with movement disorders, such as Parkinson’s disease or essential tremor disorder, which afflicts Walentiny. The 40-year-old is the eighth and youngest person in the state to undergo wiring since FDA approval.
In the $20,000 to $30,000 operation, doctors fix a charged implant under the skin below the collar bone and wire it to the brain. Patients simply switch on the battery-operated implant with a heavy magnet the size of a quarter, and turn it off when they are sleeping.
The operation blocks the brain cells that cause the tremors rather than destroying them. This blocking prevents some of the side effects and risks that come from killing cells, which can be as severe as paralysis. Doctors can also simply remove the implant if it causes complications.
The procedure boasts an 80 percent success rate and has drawn nationwide attention. Walentiny’s operation at Summit Medical Center in Oakland was filmed by 48 Hours, the CBS news magazine show.
More than two million people in the United States have essential tremor, a progressive disease similar to Parkinson’s that triggers body parts to shake uncontrollably.
When Walentiny first heard about the new treatment on the television program two years ago, she was scared. But after years of taking numerous medications without any improvement, Walentiny decided to gamble.
TREMORS: FORCED TO GO ON DISABILITY
“It was taking the risk of surgery or living with tremors for the rest of my life,” she said.
Living with essential tremor was like being in jail, she said. “My hands and legs would shake so bad, I couldn’t drink, eat, write or do most of the things everyone takes for granted,” she said.
Over the years, the trembling spread from Walentiny’s right arm and leg to her left side. A former supervisor in the electronics industry, she went on disability. Walentiny said she felt depressed and helpless.
She could not really be there for her husband and three children, she said. “When I drove my children to school, I couldn’t keep my foot on the brake at the stoplights,” she said.
She kept busy by joining the parent-teacher association in her children’s school and volunteering on the community emergency response team. Yet even doing small tasks such as pouring punch at a meeting was like climbing a mountain. And it embarrassed her when strangers saw her shake, she said.
Two months ago, Walentiny got the help she so desperately wanted at Summit Medical Center.
The surgery was lead by Dr. Laszio Tama, head surgeon at Pacific Neurosciences Institute in Orinda. Tamas said he was skeptical of the operation at first. But after years of research at Pacific Neurosciences and more than a dozen experimental operations, he is convinced that the treatment performs miracles.
He and other neurologists mapped out Walentiny’s brain, shaved her hair, bolted a halo on her head and then numbered her brain. She remained conscious as the surgeons made a dime-size hole in her skull. They then stuck a charged probe inside her brain to find and block the tremor cells that made her right side shake.
Finding the right cells that made her right side shake is the challenge, Tamas said. “(The cells are) smaller than a grain of rice,” he said.
A nervous but excited Walentiny had to keep awake so she could guide the doctors in their probing.
“I was laughing because I was so happy during the surgery,” she said. As the doctors probed, she responded by shaking. It’s like searching for a house on a road map, Tamas said.
The operation has changed Walentiny’s life. On the recent afternoon in her Ardenwood home, she talked excitedly about how much better her life was and pointed to her deep brain stimulation implant.
“I’m turned on,” she said.
She is once again able to paint and draw, her favorite hobbies. On the window sill in her house stood a sculpture of Mrs. Santa Clause.
“I just finished painting that,” she said proudly.
Walentiny can eat with chopsticks, cut vegetables with a knife, write long letters to her friends and serve punch at her children’s school meetings. She laughs at having to be careful of the metal detectors at airports and theft detectors in stores, which can be triggered by her implant.
It’s not over yet. The operation only took care of her right side, so that her left arm and leg still shake. The FDA has not yet approved a bilateral surgery. That could take a few years, she said.
But she is already planning to write a book about her illness — and its treatment.
“Having this condition is like being held captive by your body,” she said. “I don’t want other people to go through the same thing I did.”