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By Catherine Duncan
In her mid-20s, Julie Nichols started experiencing slowness of movement or bradykinesia. Her body just wouldn’t do what she wanted it to. As the years passed, multiple doctors told the San Antonio mother of three her issues were either in her head or due to exhaustion from caring for small children. But, Nichols knew it was more than that.
At the age of 41, she was diagnosed with end-of-stage-two Parkinson’s disease. Although most people with the disease develop movement symptoms after age 60, only 5 percent to 10 percent experience young-onset Parkinson’s disease at age 40 or younger.
“When most people think of Parkinson’s, they think of the tremors. I didn’t get that symptom until much later,” she said. By the time she was diagnosed by Joseph Jankovic, M.D., founder of the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, Nichols was experiencing advanced bradykinesia, rigidity, postural instability and, lastly, tremors. While medication helped control some of her symptoms, it stopped working after a period of time, and she would have difficulties in the afternoon timing her next dosage. Also, when she woke up in the morning, she could barely function until she took her first dosage and had to wait until the medicine took effect. Her husband helped dress her and brush her teeth. She used a cane or walker to get around. Dr. Jankovic, a nationally known Parkinson’s expert, recommended Nichols consider a surgical procedure to implant a deep brain stimulation system that could better control her symptoms while lowering her medicine dosages. Dr. Jankovic referred her to Juan Ramirez-Castaneda, M.D., a neurologist with UT Health San Antonio, who did his residency and fellowship with Dr. Jankovic.
“I was thrilled that I could have the surgery done in San Antonio,” Nichols said. “The first time I saw Dr. Ramirez-Castaneda he wanted me to come unmedicated. He confirmed the diagnosis and agreed I was at mid-stage which is when they do surgery. I was then referred to Alexander Papanastassiou, M.D., a UT Health neurosurgeon, who performs the brain surgery.”
Dr. Ramirez-Castaneda said Nichols is a prime example of a patient with young-onset Parkinson’s disease who has gone through all the oral medications. “The disease has continued to progress, and the oral medicine has not been able to control her symptoms.”
The medicine was not able to consistently control her symptoms, causing tremendous limitations to her life, her work and her family, he said. “The surgery was a very good option for her. And, up until last year, there was only one company building the hardware for the deep brain stimulator. “That technology had been the same for years. Another company was able to get approval in 2016 from the Federal Drug Administration for new technology that allows us to increase the success of treatment and reduce side effects,” Dr. Ramirez-Castaneda added. “It is very exciting, and Julie was the first patient in San Antonio to receive this new DBS system.”
The St. Jude Medical Infinity™ Deep Brain Stimulation (DBS) System is the first approved platform in the U.S. to feature a directional lead designed to customize therapy to improve patient outcomes and minimize side effects. Eight independent electrode contacts are distributed through one lead, enabling the physician to steer current toward targeted structures of the brain and avoid areas that could cause side effects, according to a St. Jude Medical release.
This system also is the first DBS system to use a wireless iOS™ platform so that physicians can modify the frequency of each electrode through an iPad mini™ while patients use an iTouch™ for symptom control.
“We are now able to direct stimulation to specific anatomical areas. We can safely increase voltage to get the most benefits while reducing side effects,” he explained. “In the standard type of DBS, you get benefits but also side effects. Formerly, the lead was spherical so the charge went all the way around the lead. Now, each lead has four electrodes; the two middle electrodes have three segments so you can turn one or more on at a time. We really can see the therapeutic window in each direction.”
Dr. Papanastassiou performed three surgeries on Nichols. On Dec. 8, 2016, he implanted four anchors in her skull. On Dec. 16, he performed a six-hour surgery to implant the leads in her brain. She was awake during this surgery because they needed to test the leads to make sure they were in the best locations. The third surgery on Dec. 17 involved inserting the system battery in her abdomen with lines running internally down the middle of her chest.
Although undergoing multiple surgeries was not easy, Nichols said, “It has given me my life back. It has allowed me to be a mother and a wife again. It has changed my family’s life too,” she said. “I did the surgery not only for me but for my family. I am only 45 years old. I was worried that I would have to go into assisted living. I wasn’t ready to throw in the towel yet. I also was worried I would lose my swallowing ability.”
On the third day after the power was turned on to the DBS system, “I jumped out of bed and started crying. I can dress myself. I can brush my own teeth. I can make lunches for my children. I can go to work and not worry about the medicine wearing off and not being able to walk or drive,” she said.
Dr. Ramirez-Castaneda is very pleased with Nichol’s results. “She is really showing very good control of her motor symptoms. I have seen an improvement in her mood, her confidence and her independence.
“And, now she can rely less on medication. Her life was controlled by her medication schedule. She had to take them on time. She had to watch the clock constantly,” he said. “Julie has gotten her life back.”
Nichols said she is encouraging other people with Parkinson’s to learn about the DBS system. “You have a window that you can do this surgery. Don’t wait and miss that window. If other parts of your health go down, you can’t have the surgery. I’m glad I didn’t wait any longer. I thought about it for four years.”
Nichols said she felt comfortable about undergoing the invasive surgery after meeting with her two UT Health doctors. “These are the best doctors I have ever had. Dr. Ramirez-Castaneda is kind and he listens. He is very respectful to the patients. Dr. Papanastassiou, the surgeon, is just brilliant. He was able to customize the procedures to me. My entire family owes them a debt of gratitude.”