USF Health Neuromodulation team gives Tampa woman a gift; now she and her husband pay it back
Sept. 22, 2023
Debbie Ebensberger doesn’t recall the precise moment she noticed her right hand trembling in September 2019. When it first caught her attention, she wasn’t terribly worried — a heavy steroids regimen she had undergone decades earlier occasionally caused the issue. But as COVID-19 shook the world in March 2020, her own world began to shake out of control.
The unsteadiness of her hand had been followed in the next six months by frequent tremors in her head and right leg. The neurologist she had gone to in hopes of a cure prescribed valium, but it had no effect other than to make her feel tired and disconnected.
By the summer of 2020, the pandemic had forced widespread shutdowns, and Debbie’s tremors worsened. She suffered at home in Tampa with her worried husband, Steve, a homebuilder, and their two college-aged sons, Sam and Ryan.
“I couldn’t drive anymore and I couldn’t play tennis, something I had come to love,” she says. “Basically, I was shaking 24 hours a day. And the meds I was taking to help made me feel comatose.”
Frustrated by a lack of progress, Debbie made a break with her neurologist. Then she and Steve, self-professed “nerds” who love to research everything tirelessly, went online in hopes of finding a hospital that could solve the frightening mystery.
They read about programs at the Mayo Clinic, Johns Hopkins and Shands Hospital, but were thrilled to discover a renowned facility in their own backyard. The University of South Florida’s Movement Disorders Neuromodulation Center was only a short drive away, so they made an appointment with Dr. Theresa Zesiewicz, a neurology professor and medical director of the center.
There was just one hitch: COVID-19 had created a huge backlog of appointments, and they had to wait several months to see her. Then came the worst of it.
As COVID-19 cases and risks of infection raged, Debbie’s blood pressure began to regularly spike to around 185. Then one day in September 2020, it went into potential heart attack territory.
Steve rushed Debbie to the nearest ER, where she was admitted but he couldn’t stay with her due to COVID-19 safety protocols. She sat there alone, shaking head to toe. But gradually the medication administered lowered her blood pressure, and tests came back clear. After a few long weeks, their USF appointment arrived. Dr. Zesiewicz prescribed several medications that didn’t work, so she immediately brought in the center’s surgical director, Dr. Yarema Bezchlibnyk, to meet with Debbie and Steve.
It was the first step in a remarkable journey that today has returned Debbie to her old self, filled with energy, a once-again busy schedule and the ebullient personality and humor well known to family and friends.
The path that unfolded from that first meeting would educate the Ebensbergers about the debilitating effects of a condition known as essential tremors, or ET. It would ultimately lead to boundless gratitude that USF’s neurology team could diagnose and successfully treat Debbie.
And now it has inspired the couple to give back to the program that gave Debbie her life back, through a generous multi-tiered donation.
Says Steve: “We were given a gift that we think we need to repay.”
• • •
The winding road that led them to that realization began in their native Texas, where Debbie and Steve grew up in Dallas and began dating in high school.
After finishing college and launching their careers, the couple married in 1989. Life was good. Steve switched careers, working for a residential home construction company, while Debbie went to work for a company designing Barnes & Noble bookstores.
Then came a jolt: at 30 she was diagnosed with Crohn’s, a chronic inflammatory bowel disease for which there is no cure. Doctors brought Debbie’s condition under control with heavy doses of steroids and surgery. The medication helped but also caused her hands to tremble at times — something she learned to live with as their family grew. Sam arrived in 1996, followed by Ryan in 2001.
Debbie pulled back from her career to focus on raising the boys, and the family soon relocated to Tampa when Steve received a promotion. But then came the tremors, far beyond anything she had ever experienced before.
By the time the couple met Dr. Bezchlibnyk in September, Debbie was at her wit’s end — unable to control the shaking on the right side of her body and of her head — and Steve was heartsick watching his wife in such torment.
“When I saw her, it seemed like a very typical essential tremor,” the doctor says, “but I could see it was a very disabling one.”
Dr. Bezchlibnyk was no stranger to treating essential tremors, which afflict some 10 million Americans. The condition causes uncontrollable shaking of hands, head and voice. Early on, the tremors can be mild, but often progress over time and, in some patients, like Debbie, the severity becomes unbearable.
“It doesn’t help that the condition already has a lot of stigma attached to it,” Dr. Bezchlibnyk says. “Whenever you’re interacting with people, it’s going to exacerbate the tremors. The medication that’s used to treat it causes fatigue, and the more you focus on the shaking the worse it gets.”
In Debbie’s case, everyday activities like eating at a restaurant or shopping at the grocery store became ordeals, and she was shocked to encounter so many strangers who stared or seemed disdainful of her. “But I’m stubborn,” she says. “I just kept trying to go about my routine.”
Thankfully, Dr. Bezchlibnyk had an answer that Debbie and Steve never imagined. A procedure could be performed — known as deep brain stimulation, or DBS for short. “DBS for essential tremors is very effective,” he says. “The key thing is the diagnosis and we got that from Dr. Zesiewicz. We knew there weren’t any other medical reasons not to go ahead. And we know there’s an 80 to 90 percent likelihood of a meaningful improvement in quality of life.”
That’s all they needed to hear. It was game on.
• • •
Dr. Bezchlibnyk explained that a thin wire “lead” with electronic contacts at the end of it is inserted on each side of a patient’s skull, implanting electrodes into certain areas of the brain to regulate abnormal impulses. “Think of it as a pacemaker for the brain,” he says. “It’s electrical stimulation in the part of the brain that regulates joint position and movement.”
The degree of stimulation is regulated by a small device placed under the skin near the chest bone, with a wire placed under the skin connecting to the electrodes in the brain. Doctors can adjust the settings remotely to control the tremors more precisely, and a patient can make minor adjustments as well with their own remote control device.
When Debbie went in for her surgery in January 2022, her tremors were as bad as ever. Around noon, Dr. Bezchlibnyk and his team placed her under anesthesia and began placing the electrodes in the right areas, occasionally waking her to test her speech.
After the procedure, Debbie’s tremors abated for a week or so in what doctors call a honeymoon period. The real test was still to come. During the difficult month-long wait before the battery for the electrodes could be turned on, Debbie’s tremors returned full force as her body healed.
Finally, she returned with Steve to the center for the moment of truth. The battery was turned on, and Dr. Bezchlibnyk and his team tweaked settings on an iPad for several hours as Debbie walked and talked — with no shaking.
“I had walked in that day experiencing the tremors 100 percent,” she explains. “And when I walked out, I was totally fine. We were completely in shock.”
When they got home, their first move was to FaceTime with Sam and Ryan, who were each out of state anxiously awaiting the news, joined by various friends who had come to know Debbie. “We probably had 20 people on the call and everyone was just bawling,” she says. “Nobody could believe it.”
“It was pretty surreal for both me and Ryan to see our mom get her freedom back, after all she had been through,” Sam says.
One thought hit Debbie and Steve as they left the center that day. “The thing we said to each other was, ‘Do you just say thank you? Shouldn’t we do something?’ We talked about how blessed we were. And this changed our lives. We couldn’t have just walked away like, ‘Okay, thanks.’”
Instead, they decided to express their gratitude through a gift — one that sets up a fund to support the work of the neuromodulation group, and an endowment to support faculty and residency education. It also provides a visiting professor program, as well as additional funding for neuromodulation research.
“It will really make a difference in what we do,” Dr. Bezchlibnyk says. “We’re very appreciative.”
The feeling is certainly mutual. Debbie’s world has returned to normal, though certain precautions still need to be taken. Strobe lights at Lightning games, for instance, can cause mild tremors, so she pulls a hat over her eyes to prevent that. She also wears earplugs in movie theaters and at concerts to block out high decibel sounds that can trigger a tremor.
But for the most part, she’s back to being her fun-loving self, playing tennis, savoring time with her family, and holding all that’s dear to her with a steady grip.