Deep brain stimulation (DBS) can be a life-changing experience for patients with movement disorders such as Parkinson’s disease, essential tremor or dystonia, but that transformation doesn’t happen overnight.
DBS uses electrodes placed at precise locations in a patient’s brain to deliver electrical stimulation, which helps patients control tremors, slow movement and other Parkinson’s disease or movement disorder symptoms.
After the surgical procedure, it can take anywhere from a few months to almost a year for doctors to adjust the device settings to fit a patient’s unique needs.
“It’s a very individualized recovery process, and every patient is different,” said Nurse Practitioner Tsega Orcutt, APRN, CNP, who adjusts deep brain stimulation devices for patients at the University of Minnesota Health Neurology Clinic in our Clinics and Surgery Center.
What can you expect following your deep brain stimulation implantation and activation? We asked Orcutt and Neurologist Scott Cooper, MD, PhD, to tell us more about the recovery process, including common side effects and challenges that patients often face.
Four to six weeks after the surgery, patients begin meeting with Orcutt and her colleagues to program the deep brain stimulation device. Together, the patient and care team “tune” the device so that it delivers the right amount of stimulation to minimize symptoms. Orcutt will see patients regularly until they have identified the appropriate DBS settings. During this time, Orcutt also adjusts patients’ medications.
“This process takes time,” she said. “There is no formula because everyone is unique. It all depends on a patient’s condition, where the electrodes are in the brain and what they can tolerate.”
Typically, patients will establish their optimal stimulation settings in two to three months following surgery, according to Cooper. “Sometimes it happens faster, and sometimes it takes longer,” Cooper said. “In some cases it may take a year to find the correct DBS settings.”
In the weeks and months following a DBS procedure, patients may experience some side effects, depending on medications and the initial programming. The side effects can include abnormal sensations, numbness, tingling and involuntary muscle contractions. Often, patients may also feel some discomfort related to the device’s neurostimulator (or battery pack), which is implanted under the skin near the collar bone.
Fortunately, the recovery time for the surgery itself is relatively short, and most patients can quickly return to their normal daily routine while they work with experts to program the device. Aside from a few days of post-surgical pain, which doctors treat with a mild analgesic, DBS patients typically do not experience much pain.
“Barring any complications, pain is not usually a big factor,” Cooper said.
The latest generation of DBS devices allow patients the ability to adjust their stimulation levels within certain limits, in addition to the adjustments made by their doctor and nurse. This gives some patients a greater degree of active participation in their treatment. Those who are not comfortable changing the settings themselves can leave all the adjustments to their patient care team.
“Together, we navigate the space between the side effects and therapeutic benefits to find the optimal settings for each individual.” Cooper said.
“Occasionally, people feel a lot better quickly and are so excited about their improved quality of life that they engage in risky behavior and fall or otherwise injury themselves,” he said. “The device doesn’t make you a superhero. Some limitations still exist.”