Dystonia: the gold standard
FRESNO, Calif. (KFSN) -- Dystonia is a mysterious neurological disorder that causes muscles to "freeze up" or work inconsistently. It's the third most common movement and muscular disorder, affecting more than 250,000 children and adults nationwide and there is no cure.
A delicate procedure called deep brain stimulation has been available for about a decade and experts say this has now become the "gold standard" for relieving symptoms of dystonia in some patients.
Felipe Hanel, 14, loves comic books, but his story is one that really stands out. He was diagnosed with dystonia, a neurological disorder where the muscles fight each other, affecting posture and movement.
"It started showing up as I was eating. When I would drink, my hand would shake when I would take my spoon and my fork. I was walking with a noticeable limp," Hanel told ABC30.
Medications didn't work, so Hanel's family decided to try deep brain stimulation, or DBS. Doctors put a pacemaker in his chest and then connected it to the wires that lead to his brain. He was "awake" so he could respond to the stimuli.
"We try to understand where the signals are going wrong in the brain and we try to unscramble the signals by applying electricity to different areas," Dr. Michael Okun, a Neurosurgeon at the UF Center for Movement Disorders & Neurorestoration in Gainesville, Florida told ABC30.
Dr. Okun claims it could take weeks or months to start feeling the effects and sometimes adjustments are needed. "Just tiny amounts from these leads affect these circuits and have such profound improvements for patients," he said.
For Felipe Hanel, he has a cutting-edge treatment and a doctor as his new superhero.
The batteries in the pacemaker do sometimes require patients to undergo a surgical replacement procedure. In addition to the treatment of dystonia, deep brain stimulation is also used to help treat Parkinson's and Alzheimer's.
For more information on this report, please contact:
Nickie Doria, APR
dorian@shands.ufl.edu
352-265-0373
