Dystonia has been recognized as a neurological disease for nearly 100 years, but it continues to baffle doctors.
Symptoms range from a severe case of writer's cramp to full-body twisting and jerking muscle spasms resembling cerebral palsy, with many levels in between.
What exactly goes wrong in the brain is not clear.
And a given treatment, whether surgery or drug, might work wonderfully in one patient and fail miserably in another. Or it might help for a while and then stop.
"Dystonia is really a puzzling disorder," said Janet Hieshetter, executive director of the nonprofit Dystonia Medical Research Foundation.
When the dystonia is bad and all other options are exhausted, patients may consider brain surgery to implant deep brain stimulators. The technology was approved by the US Food and Drug Administration for dystonia in 2003.
Clinical experience is still accumulating but the results of the surgery can be so dramatic that they were a major focus of the documentary "Twisted," released last year. In it, deep brain stimulation enables a young artist named Remy Campbell to go from being bent double and severely disabled by dystonia to being merely "a woman with a slight limp."
"You'd never know there's anything wrong with me," she says. She even demonstrates how, when she turns off her electrode with a clicker, she quickly finds her body so folded over itself that it is hard to breathe, just as in her bad old days.
Yet "Twisted" also follows Pat Brogan, a coach whose career and personal life are devastated by a painful form of dystonia. By the movie's end, the surgery has done little to help him.
Carey Goldberg
Dystonia resources
Dystonia Medical Research Foundation, dystonia-foundation.orgParkinson's Disease & Movement Disorders Center at Beth Israel Deaconess, contact celim@bidmc.harvard.edu
"Twisted," www.blinddogfilms.com/twisted/
