Tracy Whitcomb, Recovered neurological patient
Walking among the classic cars and vendor booths set up at Sunset Park to raise money for the Injured Police Officers Fund on a cool February afternoon, Tracy Whitcomb felt a surge of gratitude. She squeezed her boyfriend’s hand, happy to be with him, a retired officer himself, enjoying the sunny weekend and supporting a community cause.
Less than two years earlier, this moment wouldn’t have been possible. Whitcomb’s afternoon stroll would’ve been interrupted by spasms — the result of a malfunctioning device implanted in her brain — that had become so painful and frequent, she stayed home most of the time. She’d left her cherished job in corporate recruiting, and her social life had withered.
“It was very jarring, like I’d just stuck my finger in a light socket,” Whitcomb recalls. “It had the sensation of pulling on your brain, which took several minutes to recover from. At the end of day I would feel exhausted, like I’d been through a fight.”
The sad irony was, these episodes were caused by a medical device called a deep brain stimulator that Whitcomb had had implanted in her brain to diminish the symptoms of essential tremor, or ET, a genetic disorder that causes uncontrollable shaking.
ET cases like Whitcomb’s, which came on hard and fast when she was just 30 years old, are rarer than cases like that of her mother, who wasn’t diagnosed until she was in her 80s. The younger Whitcomb couldn’t manage her symptoms with medication. Within four years of the first signs, irrepressible trembling had spread to her arms and legs.
“It really was interfering with my daily activities, as well as things as simple as applying makeup, drinking, eating,” she says. “You don’t feel in control of your body. The more you try to control your movements, the worse it gets. And it’s a progressive disorder, so I would wonder, ‘Am I not going to be able to feed myself?’”
In other words, for Whitcomb, the potential benefits of surgery outweighed the risks. Still living in California, where she’d moved (from Boulder City) to go to college, she went to Newport Beach’s Hoag Health Center to have a tiny electrode — about the size of a one-inch piece of spaghetti — implanted in her brain. Wires ran from the device down the sides of her skull and neck to a small box in her chest. The box contained a power source and was programmed to send imperceptible pulses to the part of the brain’s motor center short-circuited by ET.
Whitcomb felt better immediately, but the relief was short-lived. Within months, she began experiencing the convulsive electrical surges that she likened to putting a finger in a socket. Over the following decade, she underwent 11 corrective surgeries, including five brain surgeries, to repair frayed and tangled wires, flipped-over control boxes, and other problems. When she moved to Henderson with her mother in 2014, she hoped the problems were behind her, but the shocks soon started again. (A Hoag Health Center spokeswoman didn’t return Desert Companion’s calls.)
She sought help at the Cleveland Clinic Lou Ruvo Center for Brain Health, and got it from Brent Bluett, a movement disorders specialist who, according to Whitcomb, was the first physician to really listen to her story and show empathy.
“He said, ‘I’m going to be your champion,” she says. “I thought, ‘Finally, I’m not in this alone.’”
Bluett says he’d never seen a case that had required as many revisions as Whitcomb’s. He suggested she take advantage of the center’s pipeline to its Cleveland, Ohio, location, where surgeon Andre Machado might be able to solve her problem once and for all.
“I’m very biased,” Bluett says, “but I think Dr. Machado is probably the best neurosurgeon in the country for deep brain stimulation.” (Machado, who chairs Cleveland Clinic’s neurological institute, made news last year when he performed the first DBS surgery to restore movement in a stroke patient.)
After a few months of insurance negotiations and logistical planning, Whitcomb underwent the revision surgery in Cleveland last June. Machado removed the previous device and wiring, and placed new ones in different locations, using different configurations. The new approach has worked. In the intervening year, Whitcomb says, she’s had no problems. Her essential tremor is under control, and the device is functioning correctly — no more shocks. Bluett has fine-tuned her device a few times to minimize the impact on her speech. She’s back at work, and back in the world.
“Every weekend, I look forward to having a day to wake up early and get out of bed without being held back by physical limitations,” she says. “I make plans with my boyfriend. … Every day feels like a gift.”