SOUTH BEND, Ind.--- Felipe Hanel loves comic books, but his story is one that really stands out.
"It started showing up as I was eating, when I would drink my hand would shake as I would come up, so when I would take my spoon and my fork the same thing would happen," said Felipe. "I was walking with a noticeable limp."
Felipe was diagnosed with Dystonia, a neurological disorder where the muscles fight each other affecting posture and movement.
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 in some patients.
Medications didn't work so Felipe’s family decided to try Deep Brain Stimulation or DBS.
Doctors put a pacemaker in Felipe’s chest then connected it to the wires that lead to his brain. Felipe 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," said Dr. Michael Okun, a neurosurgeon at the Center for Movement Disorder and Neurorestoration at the University of Florida.
Dr. Okun said 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," said Dr. Okun.
For Felipe, he credits a cutting-edge treatment and a doctor for improving his life.
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.
TOPIC: Dystonia: The Gold Standard
BACKGROUND: Dystonia is a neurological disorder that causes muscles to contract and create uncomfortable, abnormal postures. There are different types of dystonia that affect different muscles in the body and can occur at any age. The types include cervical dystonia, blepharospasm, cranio-facial dystonia and task-specific dystonia. For someone dealing with this disorder, they may experience sporadic involuntary movements and turns from the neck or the foot. These muscle contractions may also happen after a period of physical activity. Other symptoms include rapid blinking from the eyes, body tremors and difficulty speaking. (Source: http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm)
CAUSES: Doctors do not fully understand what causes dystonia. Researchers believe that the disorder may result from damage or dysfunction to parts of the brain that control the body's movement. Cases of dystonia are classified into three groups (idiopathic, genetic, acquired) based on what doctors believe may be the cause. Many cases of dystonia are labeled as idiopathic which means there is no clear cause. Genetic dystonia is usually caused by a defective gene passed down by one parent. Acquired dystonia is caused by environmental surroundings like a physical accident to the brain. (Source: http://www.medicinenet.com/dystonia/page2.htm#what_do_researchers_know_about_dystonia)
NEW TECHNOLOGY: By using deep brain stimulation (DBS) doctors at the UF Health Center for Movement Disorders & Neurorestoration may now have a new way to fight dystonia. DBS uses an implanted device to send electrical signals to the brain in order to disrupt and scramble the dysfunctional signals from dystonia. Doctors first implant neurostimulators under the patient's collarbone and connect these stimulators to the brain. Everything is under the skin with no external parts or wires. DBS has been used effectively for people with Parkinson's disease and Alzheimer's; treating over 30,000 people across the globe. The program at UF has reached a milestone of 1000 DBS leads. The positive experience with both Parkinson's and Alzheimer's treatment is leading DBS to become the gold standard for treating dystonia. (Source: http://www.spasmodictorticollis.org/index.cfm?pid=114&pageTitle=Deep-Brain-Stimulation-for-Dystonia:-What-You-Need-to-Know)