What to Expect from DBS
Understanding Device Programming and Adjustments
Once a patient has fully healed from DBS surgery, usually after about four weeks, the device that delivers electrical stimulation to the brain can be turned on. The patient and their healthcare team work together over time to adjust the device settings to fit the patient’s specific needs.
The process for programming a DBS device to find the right settings for a patient typically takes a few months to get right, and in rare cases, it may take much longer. So that a patient can adjust to different levels of electrical stimulation, the device settings can only be turned up gradually. The programming process requires a commitment from families to attend monthly in-person visits.
Some caregivers are surprised by the programming stage of the process. Because they had been hyper-focused on the surgery, they anticipated a “quick fix” once the surgery was over.
Programming can be a trial-and-error process. It can be hard and frustrating for families because the patient’s improvement doesn't always look gradual, and programming sessions can result in side effects. For example, a patient may be able to write one day, but unable to control their hand the next day. Some caregivers describe the process feeling like “two steps forward and one step back.”
Learning about device settings and how they function, as well as how to track programming improvements or setbacks, can help you, your child, and your family prepare for life after surgery.
What You Need to Know About Batteries
Battery Placement
With DBS, the battery or batteries used are implanted in the chest or abdomen. The battery powers the electrodes that deliver the electrical stimulation to regions of the brain. In some cases, implantation of the electrodes and the battery are done during the same surgery. In other cases, they are implanted in separate surgeries.
Battery Types
Permanent or rechargeable batteries can be used with a DBS device. Patients and caregivers may have preferences for the type of battery that's used, and clinicians can help evaluate which patients are good candidates for which battery type.
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Permanent Batteries
Permanent batteries typically last between 3-7 years, depending on the severity of a patient’s movements. Battery replacement surgery is common after approximately four years, and some patients have battery replacement surgery on an outpatient basis. Following battery replacement surgery, patients may be limited to certain kinds of activities to prevent infection or device failure.
Patient and Caregiver Perspective
Some caregivers note that, due to the nature of the device and the settings for their child, permanent batteries can run out quickly.
Rechargeable Batteries
Rechargeable batteries last between 7-15 years, depending on the available technology. Batteries typically need to be charged every two to three days for approximately two to three hours. Patients are required to stay still during the charging process, usually by sitting or lying down.
A three-year follow-up study found that 38% of patients required rechargeable battery replacement. Additionally, 23% experienced frequent problems maintaining connection during recharging. However, the majority of respondents, 83%, considered recharging to be either a very small or nonexistent concern.
Patient and Caregiver Perspective
Some caregivers of younger patients feel their child won't be responsible enough to take care of rechargeable batteries. Even while permanent batteries will require replacement later, they prefer them, knowing their child won't have to remember to charge their batteries on a regular basis.
Caregivers have expressed concern that if rechargeable batteries lose their charge entirely, their child will have to undergo an additional replacement surgery. In places where power outages happen frequently, caregivers worry their child will face a medical emergency if the device shuts off completely.
Impact on Patient Quality of Life
Outcomes for every patient are different, however, improving quality of life is a central goal for pursuing DBS. Caregivers and clinicians pursue DBS in the hope of alleviating patient pain and suffering and providing greater independence, leading to improved quality of life for a patient. Long-term well-being requires balancing a patient's current and potential future care needs, as well as potential DBS outcomes.
Many caregivers express they want their child to have a "normal" childhood. In considering long-term impacts, they want to ensure that DBS won't limit their child's ability to learn, travel, and play sports.
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Overall, clinicians expect DBS patients will experience a broadening of their horizons. They note that most patients are able to engage with sports, but caution that they may be limited when it comes to playing contact sports, such as karate and wrestling, which could pose risks to DBS hardware. Some patients report being able to pick up new sports, such as basketball and volleyball, due to their dystonia symptom control. When it comes to travel, it's easy and safe to travel with a DBS device, but it may take careful planning. Metal detectors shouldn’t affect or interfere with the device but it may cause the detector to beep so carrying an implant card will help patients bypass this. Many patients express that DBS does improve quality of life and their symptoms, providing them with opportunities they previously would not have had.