Making life “golden” again: Brain-stimulating surgery gives some patients back their quality of life | by
Movement disorders can steal people’s quality of life, often at a gradual pace, leaving their retirement years far from “golden.” As these diseases progress, jobs are lost, hobbies forgotten, and relationships strained. Parkinson’s disease and Essential Tremor are just two of many such disorders, which alone affect 500,000 and 10 million Americans, respectively. Below, we take a look at the efforts in our own backyard by recognized experts at Swedish Medical Center, who are offering patients hope through a procedure called Deep Brain Stimulation.
Reeling in the years: Springs woman regains life’s pleasures
Gayle Schendzielos noticed the tremor shortly after her 50th birthday. Her hands had begun to quiver with every task — typing, sewing, capping the toothpaste. It was only a slight tremor, but it was a sign: She was destined for the “shakes,” as her mother called the genetically-linked disorder when Schendzielos was growing up.
Unlike her mom and other relatives who accepted the condition as fate, Schendzielos saw a doctor, learning the name “Essential Tremor” and accepting drugs to ease the symptoms. But while her medicine chest grew fuller over the years, her tremors intensified. Nearly 15 years later, the Colorado Springs grandmother of 17 found herself debilitated not only by tremors, but by a zombie-like drug state and a $1,000 monthly prescription bill.
“Last year, my 11-year-old granddaughter begged me to teach her to sew. I tried for three hours to thread my machine, and I just could not do it,” said Schendzielos, 65, who had lost her job and watched many of her joys in life fade away. An avid fly-fisher, she could no longer finesse the line let alone tie a fly. A competitive bridge player, she could no longer hold a hand without dropping cards. Her glass-cutting tools were boxed up. Her piano was sold. “I couldn’t even go to lunch with friends. Food would fly everywhere.”
Soon, her husband found himself doing nearly everything for his wife, and the couple was bidding farewell to golden-year plans of fishing, traveling and enjoying a large family. Then Schendzielos received an invitation in the mail that changed her life.
Schendzielos was invited to a support group at the Movement and NeuroPerformance Center, co-founded by neurologist Dr. Monique Giroux. Giroux, also medical director of the Movement Disorders and Deep Brain Stimulation program at Swedish Medical Center, told the hopeless Schendzielos that she had options, including DBS, which she and her interdisciplinary team had recently begun offering in Denver.
Deep Brain Stimulation involves placing leads in the brain that are controlled by a small, pacemaker-like device that is implanted in the chest. Electrical impulses, directed at the exact spot for individual patients, disrupt the brain signals responsible for their movement disorders. More than 100,000 DBS surgeries have been performed on patients with ailments such as tremors, dystonia and Parkinson’s Disease.
Schendzielos researched the surgery and sought more medical opinions. Ultimately, she was impressed by the skill of the hospital’s team, which includes Dr. Adam Hebb, director of functional neurosurgery, and physician assistant Sierra Farris, an expert in movement disorders and DBS programming. “When we left that office, we knew that was the team we wanted, because they all worked so closely together, and there was never any pressure,” she says.
When she was first wheeled into the operating room, Schendzielos says she felt hesitant. But soon, because all of the members of the medical team had gone over every aspect of the surgery many times, Schendzielos says she was not only comfortable, but enthralled. “They started by having me draw a spiral and a straight line and writing my name,” Schendzielos says. She failed at all three. “My line looked like waves on the ocean,” she says with a chuckle.
Then the surgery began, with Schendzielos awake, which Hebb says helps surgeons place leads with absolute precision. “I never felt a thing,” says Schendzielos, who was numbed and mildly sedated. She recalls odd sounds as Hebb began threading the spaghetti-like leads into the brain in search of the exact spot responsible for Schendzielos’ symptoms.
“We were listening to recordings of the brain activity in order to create a map of the brain so that the placement of these electrodes would be precise,” Hebb says. “What she was hearing was the amplification of her brain signals. We use those brain signals to provide additional information over and above what we already have from MRI imaging of her brain. So we compare the imaging with the actual function of the brain.”
Schendzielos remembers doctors asking her what she was feeling. First it was pins and needles in her feet. Then one side of her face went numb and her tongue curled. “It was quite bizarre,” says Schendzielos, who labeled the experience “remarkable.” By talking to Schendzielos while performing stimulation, Hebb was assessing the best lead placement for the ultimate benefits. “We have the opportunity to customize the placement for the best results possible,” he says.
Once that “sweet spot,” as her providers call it, is found and the stimulation is turned on, the results of the careful targeting become immediately apparent in the operating room. “Sierra said to try to touch her finger,” Schendzielos recalls. “I held the tip of mine to hers without touching, and mine was perfectly steady. I could make a perfect spiral. I could draw a straight line. I could write my name, and you could read every single letter.”
Today, Schendzielos says she’s 95 percent back to normal and that the team is quick to see her and fix any problems that arise. And she still makes that support group that started her journey a priority. “We share our struggles. We share our successes. It’s so heartwarming.”
Although the technology treats only the movement-disorder aspect of a disease (for instance, the degenerative aspects of Parkinson’s will continue to progress), it’s still a miraculous medical treatment to provide, Hebb says. Giroux agrees, adding: “DBS does more than treat the symptoms. It sets the clock back, restoring functions that the patient had before other treatment.” It also improves life by reducing side effects and reliance on life-altering drugs.
Schendzielos is a believer. “I’m back to fly fishing. I’m back to playing cards. I’m back to doing glass. This year, I taught my granddaughter to sew. It was nothing short of a miracle for me. I had thought this was the way I was going to live the rest of my life – debilitated. On my first fishing trip after surgery, the entire family went. When I caught my first fish, the kids and I cried. I got my life back.”
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