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How to Decide

Benefits of DBS

Dystonia is a potentially severe movement disorder that occurs in both adults and children. Dystonia may be inherited or caused by a neurological disease or injury, while other cases of dystonia have no known cause. There are many effective treatments for dystonia, but these treatments may not work for some patients. A common symptom of dystonia is uncontrolled muscular contractions, which can cause skeletal deformities. Children with treatment-resistant dystonia may also have difficulty walking, eating, swallowing, breathing, and talking.

Primary Dystonia
  • Elkaim et al’s (2019) meta-analysis reported that out of 111 pediatric patients with primary dystonia without degeneration or structural lesions, 88.2% had at least a 20% improvement for motor scores, which involves measuring Dystonia in different body regions, including eyes, mouth, speech, swallowing, neck, trunk, arms, and legs (Burke et al 1985).
  • However, out of 50 cases involving patients with degeneration or structural lesions, median improvement for motor scores (measuring Dystonia in different body regions, including eyes, mouth, speech swallowing, neck, trunk, arms, and legs) was 26.8%
  • There was also no improvement for disability scores for functional activities that affect quality of life, which consists of reports from caregivers and patients about experiences with daily activities, including speech, writing, eating, hygiene, and so forth (Elkaim et al 2019; Muñoz et al 2020).
Secondary Dystonia
  • Elkaim et al (2019) also reported that for 59 cases of patients with secondary Dystonia, median improvement for motor scores (measuring Dystonia in different body regions including eyes, mouth, speech, swallowing, neck, trunk, arms and legs) was 11.1% and 3.5% for disability scores (reports from caregivers and/or patients about daily activities, including speech, writing, eating, and hygiene).
Idiopathic Dystonia
  • Elkaim et al (2019) reported that for 72 patients with idiopathic Dystonia (no clear cause of Dystonia), DBS provided patients with a median improvement of 50.5% for motor scores (measuring Dystonia in different body regions including eyes, mouth, speech, swallowing, neck, trunk, arms and legs) and 39.2% for disability (reports from caregivers and/or patients about daily activities, including speech, writing, eating, and hygiene). 

Risks of DBS

DBS has different risks, and some risks may be higher for some patients. The following include some of the risks to patients who undergo deep brain stimulation therapy.

Surgical Risks – Surgical risks from DBS include wound infection and pain at the implantation site of the battery or electrodes.

Infection – One study found that infections occur in 10.3% of children within 6 months of surgery. More than 85% of these cases required removal and reimplantation of the DBS device. Additional surgeries carry increased risks for patients.

Pain – Pain after surgery is common. Following surgery, patients are generally treated with morphine for up to 12 hours to manage pain, constipation, feeding, and vomiting. Among some patients, DBS settings need to be temporarily adjusted to alleviate pain.

Hardware Complications – DBS electrodes can malfunction, break, or move from their original placement site. Hardware complications have been reported in 18.4% of pediatric patients, and equipment risks may occur more often in children who are still growing and active. While common, electrode malfunctions generally do not have significant side effects, but electrode placement and functioning should be checked at every programming session.

Other rare hardware complications include difficulty recharging the device batteries. Patients may also face skin erosion on the scalp leading to the need for permanent removal of the DBS device.

The risks, benefits, and outcome may vary patient to patient. Please speak to your clinician to understand what you can expect before, during, and after DBS surgery.


Delaying DBS 

Are there any benefits or risks if DBS is delayed?

  • There are some potential harms from lack of intervention to consider. One key consideration is whether the patient loses time where they could have had improved movements and improved quality of life overall if they had pursued DBS. In addition, skeletal deformities may worsen over time if untreated.
  • Clinicians noted that early intervention when the patient is of a younger age can result in a higher chance of success. The patient’s disease progression is often still in the early stages, and so, for example, they may not yet have any fixed skeletal deformities. However, outcomes will depend on each patient’s specific circumstances, such as disease progression, quality of life, symptom severity, and genetic status of Dystonia.
Alternative treatment

Alternative Treatment Plans

Since DBS is often a last resort, many patients will likely have already pursued treatment options including: botulinum toxin (Botox) injections, physical therapy, as well as other oral medications.

What are some alternative treatment plans for Dystonia?
Three additional treatment options, though less common are:
  • Intrathecal baclofen pump: This involves a procedure to place a catheter in the cervical spine to administer doses of baclofen, a muscle relaxant. Some side effects may include sleep apnea and difficulty swallowing. Frequent visits to refill medication may also be required.
  • Radiofrequency lesioning of the globus pallidus (or pallidotomy): This treatment option may be used for patients who may have difficulty tolerating DBS surgical implantation.
  • Denervation: This treatment option involves surgical denervation at the spinal root level or peripheral nerve level.

Overall, patients and caregivers should consult with their healthcare team about the most ideal treatment plan, taking into full consideration the patient’s circumstances (e.g., quality of life, symptom severity, and genetic status of Dystonia).


Patient Capacity and Autonomy

The average age range of pediatric DBS patients in 7-17, and patients are able to participate in the decision-making process to different extents. Many caregivers and clinicians believe that it is important to explain the procedure at an age-appropriate level and attain patient assent, and older patients will be more able to participate in this process. 

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