About DBS Surgery
Deep brain stimulation (DBS) is a neurosurgical procedure used to treat childhood dystonia. During DBS surgery, electrodes are implanted in specific regions of the brain to provide stimulation to the brain, with the goal of helping improve a child's quality of life and managing the symptoms of dystonia.
There are both risks and benefits to DBS. Because every patient is different, it’s challenging to project outcomes of surgery. If you decide to pursue DBS surgery for your child, it’s important to know what to expect before, during, and after the procedure.
What to Know
In preparation for surgery, clinicians may implant test leads to find ideal locations for electrode implantation and to determine a patient's response. For the surgery itself, some clinicians offer patients a choice to shave part of their head, while other clinicians require it. (There is a higher risk of infection if part of the head is not shaved.) Because DBS surgery involves stitches on the chest and head, there may be scarring on the scalp, which can prevent hair from growing back.
Surgery for implanting electrodes can last as long as 6 hours. If a second procedure is required to place the battery, this shorter procedure usually lasts 2-3 hours. Many patients are asked to stay awake during neurosurgery so the team can monitor the progress of the procedure.
Hospital stays differ for every patient and range from one to several days. While hospital policies differ, parents are typically allowed to be with their child while the child is recovering in the hospital.
Because every patient is unique, surgery recovery is different for everyone. Some patients begin walking short distances on their own within months, using assistive devices like a wheelchair or crutches for longer distances. Other patients are able to carry out regular activities within a week, with some accommodations.
Full recovery from surgery can take anywhere from 6 months to 2 years, depending on the severity of the patient’s condition. Some patients, for example, reported a recovery timeline of 9-10 months, while others began to see small improvements around 6 months. However, some caregivers reported that patients experienced a challenging recovery period lasting longer than a year.
After surgery, it's recommended that patients not take part in activities that can put pressure on the battery. These include swimming, contact sports such as karate and wrestling, and riding rollercoasters.
Side Effects & Complications from DBS Surgery
Common side effects following DBS surgery include feeling tired or fatigued, and some patients experience temporary brain swelling. Patients may also experience side effects from the medications used to help relieve pain after surgery. Some families and caregivers report patients experiencing temporary delayed response time to questions, feeling like they are in a ‘brain fog’, and slowed processing of information.
For more information on DBS surgery, visit the Oxford Functional Neurosurgery page here.