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About DBS Treatment

How Can Childhood Dystonia Be Treated?

Initial treatments for dystonia often include medication alongside occupational therapy. In cases where these approaches are not successful, Deep Brain Stimulation, or DBS, may be considered.

DBS is a neurosurgical procedure that can be used to treat dystonia in children between 7-17 years of age. DBS may be recommended by a clinician only after patients with treatment-resistant dystonia have exhausted other available treatment options.

DBS involves surgery to implant electrodes in specific regions of the brain. Wires under the skin connect these electrodes to a battery that’s surgically implanted in the chest or abdomen. The electrodes deliver electrical stimulation to specific regions of the brain to reduce symptoms.

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Stimulator Leads
The lead is the part of the stimulator that connects with the part of the brain to be stimulated.
Extensions
The extension is the insulated wire (below the skin) that connects the lead and the stimulator.
Neurostimulator (under skin)
The stimulator is encased in a titanium case. It sends electrical pulses to the target site of the brain.
About dbs
Neurostimulator (under skin)
The stimulator is encased in a titanium case. It sends electrical pulses to the target site of the brain.
Specs
- 2 inches x 2 inches
About dbs
Extensions
The extension is the insulated wire (below the skin) that connects the lead and the stimulator.
About dbs
Stimulator Leads
The lead is the part of the stimulator that connects with the part of the brain to be stimulated.
About dbs
Kid

Setting Expectations: What Can DBS Do?

It's important to understand what DBS can and cannot do, and what to expect before, during and after DBS surgery.

Deep Brain Stimulation does not cure dystonia. It also does not instantly alleviate symptoms. Instead, DBS has the potential to improve a child’s quality of life and aid in managing the symptoms of childhood dystonia.
 
The benefits of DBS depend on the type of dystonia being treated. While DBS is not a cure, patients may expect to experience some improvements in symptoms. This may allow a child to become more independent, feed themselves, and experience less pain. They may also be less dependent on multiple medications to manage their symptoms.

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Clearing Up Misconceptions About DBS

When other medications and therapies don't help, it can be tempting to overestimate the potential benefits of DBS treatment. Families and caregivers may think DBS will “fix” or “cure” their child’s dystonia, which can lead to disappointment.

Because it can be challenging to project outcomes of DBS, there are important realities families should recognize in advance of treatment.

DBS is a lengthy process. It is not a single event.
Treatment extends well beyond surgery and includes a long period of device programming and adjustment.
Treatment requires ongoing clinic visits.
After surgery, it can take many visits to the clinic to calibrate the DBS device to find the settings that reduce a patient's symptoms. Some caregivers are surprised by how complicated and lengthy this process can be.
Fluctuations in improvements can occur.
Some patients experience large fluctuations in improvements, even with a calibrated device. While these setbacks are usually unexpected, they can cause concern and disappointment for caregivers and the patient.
Outcomes are different for each patient.
Because every patient is different, it’s challenging to project outcomes of DBS. Families, caregivers, and patients need to be prepared for outcomes that may differ from their expectations.

While DBS is not a cure for dystonia, it's also important to consider the potential benefits for your child. Talk about your options with your family and your medical team. This website can help you with those conversations, and provide the facts you need to make an informed decision.

Learn More About DBS Surgery

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