‘Pacemaker for the brain’ helps Tahoe man
Thomas Nicola usually is unaware of his “blackouts.” They come on with no warning or signal. Just walking down the street alone could be filled with danger for the South Lake Tahoe resident.
The cause is epilepsy. Since the age of 14, Thomas has battled with the problem that doctors believe is a result of his premature birth. At one point the seizures pushed him into such a deep depression that he overdosed on prescription medication.
“The seizures depressed him, and the medication to help the seizures also caused depression,” said Barbara Nicola, Thomas’ wife. “There are a lot of people with epilepsy, but very few have gone through what Tom has.”
The seizures increased and after 19 years of working at Harrah’s Lake Tahoe, Thomas finally quit his job in the early 1980s and went on permanent disability. He underwent brain surgery in 1981 in hopes of lessening his seizures.
“They took out an egg shaped piece of my brain,” Thomas said, running his hand over a scar hidden under his hair.
“It helped him for awhile but then they came back,” Barbara said. “After more tests they found that the seizures had spread to both sides of his brain. He was no longer a candidate for surgery.”
The Nicolas went on to explore different medications, including some experimental drugs. Medication offered temporary periods of relief, and helped control Thomas’ grand mal seizures. But, it did nothing for his complex partial seizures or “blackouts.”
Thomas, 44, was having an average of 40 seizures a month when doctors suggested he consider the vagus nerve stimulator or “pacemaker for the brain.”
Dr. William Marks Jr., epileptologist at the University of California, San Francisco Epilepsy Center, performed the procedure on Thomas, who was the first person to be implanted with the device in San Francisco.
“An electrode is wrapped around the vagus nerve, and a pacemaker-like generator is implanted near the collarbone,” Marks explained. “A small computer controls the exact amount of stimulation. In a usual cycle, 30 seconds of stimulation are followed by five minutes where the device is off.”
Thomas had the surgery in July 1998 and his seizures have been reduced from 40 a month to about 12. Marks said the vagus nerve stimulator was approved for use in the United States in 1997, and a little more than 3,000 people in the world have one.
“Nobody knows for sure the exact mechanism for how this device helps reduce seizures,” Marks said. “There is still a lot of research being done on animals, but it’s still very murky.”
The devise is available for patients who aren’t considered brain surgery candidates, and who have tried various medications with no relief, Marks said.
“It isn’t a magical cure for epilepsy, but it can be revolutionary for some patients. A third of the patients have excellent results with a 50 to 90 percent decrease in the frequency of their seizures. A third get a 25 to 30 percent reduction, and the remaining third don’t get much of a response,” Marks explained.
Patients can also trigger the stimulation themselves if they feel a seizure coming on.
“The patient or a family member can use a magnet placed over the devise to turn it on,” Marks said. “It gives the patient some control over a seizure that no other treatment really offers.”
The only irritation for Thomas seems to be when the device is working. It causes a hoarseness in his voice because the stimulator is behind his larynx.
Thomas grew up in South Lake Tahoe. His family moved here when he was 9.
“We’ll probably never move for that reason,” Barbara said. “The seizures leave him disoriented. Most of the time he can figure out where he is here.”
The Nicolas are cautiously upbeat about the future.
“Every month we go back to San Francisco and they have been increasing the watts slowly. The dream of course is that he wouldn’t have any more seizures and need less medication, but that’s not realistic,” Barbara said. “But, it’s a definite improvement.”
Anyone wanting more information about epilepsy or the vagus nerve stimulator can contact the UCSF Epilepsy Center at (415) 476-6337, or the Epilepsy Foundation of America at (800) EFA-1000.
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