May 21, 2019
Kathleen Thomas turned to her husband, Greg, and said simply, "I feel good."
After brain surgery several weeks earlier, she'd had different thoughts. She'd looked in the mirror at her shaved head and bruised neck and chest and wondered, "What have I gotten myself into?"
The outward signs of her deep brain stimulation (DBS) surgery gave her pause. She could see where her surgeon implanted wire and harware. She could trace the wire from her head down her neck to a battery pack in her chest. But she expected the outcome would be worthwhile. She believed the procedure would restore function and freedom she'd lost to Parkinson's disease.
"I feel good." It was the turning point when she and Greg knew they'd made the right decision.
Options after medicines
Kathy, 70, mother of 3 and grandmother of 5, noticed a tremor in her foot almost 10 years ago. She and Greg, a primary care physician, knew the likely cause – Parkinson's disease. The neurodegenerative disorder often begins with tremor and progresses to problems with balance and walking, slowness of movement and difficulty with speech.
In Kathy's case, symptoms progressed rapidly. Her prescribed medications caused unwelcome side effects. She found walking more and more difficult and began to need help with personal care and hygiene.
Her neurologist in Wichita, Kansas, recommended she see movement disorder specialist Rajesh Pahwa, MD, director of the Parkinson's disease and movement disorder program at The University of Kansas Health System. Kathy was ready. She and Greg traveled to the appointment from their McPherson, Kansas, home.
"Some patients like Kathy, who've had Parkinson's for several years, have problems tolerating the medications," explains Dr. Pahwa. "They either can't take them due to side effects or find that they simply don't work to control the symptoms consistently."
"I wanted to be able to take care of myself again," Kathy says.
For some patients, DBS may be an option. Surgeons implant a device that provides electrical stimulation to the brain regions that control movement. A wire, known as a lead, delivers the stimulation. It is carefully positioned and connected to a wire that runs down the side of the neck and into a battery pack in the chest.
"DBS is no longer investigational," Dr. Pahwa adds. "This is not the standard treatment for this patient population."
Health system neurosurgeon Jules Nazzaro, MD, a nationally known expert, specializes in DBS surgery. He implanted stimulators in both sides of Kathy's brain during 2 separate surgeries performed a month apart in July and August 2018.
Dr. Nazzaro used high-resolution imaging to determine the best surgical approach and location for the DBS leads. The surgery is complex and highly individualized with the exact target for implantation unique to each patient's symptoms and anatomy. There are 3 target regions in the brain: the thalamus, the subthalamic nucleus (STN) and the globus pallidus (GPi). Each structure influences movement and sensory impulses.
"Originally, we thought Kathy's DBS would be implanted in the STN," explains Greg. "But Dr. Nazzaro, in reviewing Kathy's MRI images in great detail, saw that there were some very tiny veins in the way of that site, so he opted for the GPi instead. The very high quality of the equipment and expertise here at the health system was key to making that important decision."
That level of precision and personalization helps each DBS patient achieve the best possible outcome.
Turned on to a second chance
A month after her second surgery, Kathy returned to the health system. It was time to turn on the stimulators and begin the process of programming and fine-tuning the signals that would help her brain communicate with her muscles.
Dr. Pahwa and specially trained staff adjust 4 different sites on each lead wire to control voltage, frequency and wave length, personalizing the stimulation delivered to the brain. Janet Kirk, RN, a clinical nurse coordinator for movement disorders, underwent specialized training in DBS programming. She sees about 10 patients per week, adjusting their DBS as needed.
"We meet before the patient's surgery to observe their symptoms with and without medication," Kirk explains. "Typically, I see them again about a month after surgery, once the brain has had some time to heal and swelling is decreased. Then we follow up several times during the first year after the surgery. Most patients continue to improve over that first year."
One of the symptoms bothering Kathy before her surgery was "freezing," a temporary, involuntary inability to move. As Kirk prepared to activate Kathy's DBS, Kathy sat in a chair with her left hand balled into a fist. A muscle in her back was clenched, causing her to lean slightly to her side.
Within seconds of her DBS activation, Kathy's fist and back relaxed, and she felt immediate relief. During the next 5 months, Kathy and Greg made several visits to the center for further refinements. She has follow-up visits scheduled for 6 months and a year after her surgery.
"I have my life back."
Kathy relishes her restored function.
"Before the surgery, I really felt like I belonged in a nursing home," Kathy says. "Greg was a wonderful caregiver, but I felt I was asking too much of him."
"It's all part of the deal," chuckles Greg, who is looking forward to celebrating 50 years of marriage to Kathy in 2020. "We're just very fortunate to have access to the truly world-class team here at the health system. The facilities, the talent, the proven track record – it's all top-notch here. As a family physician who treats Parkinson's disease, I'll definitely recommend my patients seek assessments here and consider DBS if they aren't doing well on their medications."
"After my last adjustment, I could walk into church on my own 2 feet again," Kathy continues. "There was great rejoicing that day! Everyone from my family to my church to my community to the wonderful team here at the movement disorder center has been so supportive, and they all seem so tickled for me. I really do feel like I have my life back. I'd do it all again in a heartbeat."