Programming the stimulator
Programming is the third stage in care for the patient with DBS and follows the evaluation and implantation stages. Adjusting of the neurostimulator is perhaps the most crucial stage in the process since adequate stimulation settings is a significant factor in the overall effectiveness of deep brain stimulation for the long-term. The important steps of the programming process and most commonly asked questions are summarized below.
- When is the neurostimulator initially turned on? The timing of the first programming varies depending on the clinician. Typically, the first programming occurs 2-4 weeks after implantation and it will take about an hour to determine the most effective stimulation settings. The first programming may be done in the off medication state to allow the programming clinician to test the patient's symptom response to stimulation. Once the best stimulation settings are determined, the patient generally takes their morning dose of medication and the clinician will then monitor for stimulation side effects and dyskinesia. The total time for the first programming could take up to 2-3 hours depending on the patient's response.
- How many possibilities are there for stimulation settings? Although there are several parameters that must be adjusted (voltage, pulse width, frequency, polarity), each patient may only have a few effective stimulation settings.
- What are the typical side effects that may be encountered during the stimulation adjustments? Stimulation side effects noted during programming are reversible and depend entirely on the placement of the electrodes and intensity of the stimulation. Common side effects include muscle twitching or contraction, change in speech, blurred or double vision, tingling or numbness, surge or pulsating sensation, dizziness, change in mood or change in walking or balance. These side effects do not resolve over time and should be discussed with the clinician before the stimulation adjustments are completed.
- How long will it take to feel my best after the neurostimulator is turned on? Stiffness, slowness and tremor may improve significantly in the first couple months after turning on the stimulation. It may take longer to feel the maximal decrease in wearing off and/or dyskinesia. Typically, during the first 6 to 9 months after implantation, the intensity of your neurostimulator settings will be gradually increased. We expect to see optimal improvement in symptoms during the first year with the following years focused on monitoring the hardware, battery status and any skin changes that is adjacent to the hardware.
- How often should the stimulation settings be changed? Stimulation adjustments may occur every 2-6 weeks depending on your symptoms, medication regimen and distance from the clinic. If frequent stimulation changes are requested after the first year, we become concerned about factors that may be impacting your outcome such as placement of the electrodes, hardware issues or patient expectations.
- How long will the benefits from stimulation last? We have both clinical experience and research outcomes to support the effectiveness of stimulation for at least 10 years. However, the expected benefit includes those symptoms that are known to be responsive to stimulation and include stiffness, slowness, tremor, dyskinesia and wearing off. The symptoms that have little to no response to stimulation (walking, balance, speech, cognition) are typically the most distressing and may precipitate an increase in stimulation that can lead to side effects that can actually worsen walking, balance, speech and swallowing. Clinicians that have many years of expertise with DBS can help stratify whether the benefit from DBS is optimized over the long-term.
- How much can I reduce medications after DBS surgery? Medication reduction is a realistic expectation after DBS surgery. The total amount of medication reduction depends on the patient's symptoms and proper placement of the electrodes and stimulation settings. Medication reduction that is too rapid may lead to worsening gait, balance, freezing fatigue, sleep, mood and cognition.
- What if the stimulation didn't help or worsened your symptoms? During the first year, stimulation settings are optimized, symptoms should improve and medications may be reduced. We do not expect DBS to fail when all steps have been properly followed and the patient is an appropriate candidate for surgery. These steps include - thorough medical evaluation for DBS, proper placement of the electrodes, intact hardware, optimal stimulation settings and medication management and realistic patient expectations. If the outcome of surgery fails to meet the known expectation for DBS, an in-depth evaluation should occur to determine the cause so that an action plan can be established.
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Author: Sierra Farris, PA-C
DBS Services Director, Movement & Neuroperformance Center of Colorado