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How DBS works is not completely known, but it has proven effective and is widely used in several neurological disorders such as Parkinson’s Disease, tremor and dystonia. DBS has been in use for more than 25 years, and more than 100,000 people around the world have received DBS therapy.
Children with dystonia respond variably to DBS, depending on the underlying cause. Many children will have a noticeable improvement in function, ease of cares and quality of life. Improvement is slow and typically takes at least 6 to 12 months to see a substantial difference.
It’s important to note that DBS is not a cure, and abnormal movements will return when the system is turned off. So it is important that the system remains with adequate battery life at all times.
The children who do best with DBS tend to be younger and to start therapy before the symptoms cause permanent physical damage, such as joints that are fixed in place.
Children who have an inherited form of dystonia seem to benefit most, but those children with secondary causes of dystonia also get meaningful benefit.
Currently available treatments for dystonia include physical therapy, oral medications, botulinum toxin (Botox) injections to affected muscles, splinting and neurosurgery. These treatments alleviate symptoms, but none provide a cure. Botox works best for dystonia that affects a single area or only a few body parts but is insufficient for dystonias that are generalized throughout the body. There are other drugs with a body-wide effect, such as baclofen, a muscle relaxant, and trihexyphenidyl, which can relieve stiffness, tremors and spasms. However, these drugs do not benefit all children and can have unwanted side effects such as respiratory problems and reducing alertness.
DBS therapy involves brain surgery to implant leads into the brain, which are then connect to extensions wires and a neurostimulator which are placed under the skin. The surgery typically lasts several hours, while the child is asleep under general anaesthesia, and requires a hospital stay.
The leads are inserted first, through a small opening in the skull, to a precisely targeted site within the brain. The extensions and neurostimulator are usually implanted and connected during the same procedure.
The neurostimulator usually is turned on shortly following the operation. The stimulation settings are then individually tailored to each child gradually. This requires several follow-up visits—at first, every month after surgery, then every few months once the best settings have been determined. The final DBS settings determine how much power output is needed and therefore the frequency of recharging necessary to maintain the battery charge.
Children with DBS systems need to follow some specific precautions; for example, they can only have MRI scans under certain conditions, and there are situations in which the stimulator will need to be turned off. Your neurologist and neurosurgeon will review all these precautions with you.
As with any brain surgery and medical treatment, there are some risks to consider with DBS therapy. Your care team will discuss possible surgical complications and therapy side effects with you.
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