"He could not sit on a chair, he had to lie down in a bed or on the floor. He could not write his name on a piece of paper. The poor boy was basically wheelchair bound," Michele Tagliati, M.D., FAAN, professor and vice chairman and director of movement disorders at Cedars-Sinai Medical Center told Ivanhoe.
For Michael Sharp, it happened suddenly.
"It escalated to where my arm was kind of stuck like this for a few months!" Michael Sharp told Ivanhoe.
And he gradually got worse.
"The worst of it? I was bent forward, my neck would be tilting backwards and everything else would be twisting around on its own," Michael said.
A movement disorder called dystonia took over the 11-year-old's body. Meds work for one in four sufferers, Michael was not one of them.
"It had severe effects which include memory loss," Michael said.
He left school, and traveled the world to try experimental treatments.
"In the end it always came back," Michael said.
After four years of pain, doctors suggested deep brain stimulation, a surgical procedure often used to treat Parkinson's. Electrodes are placed inside the brain, and wires connect them to batteries implanted in the chest. The device sends electrical pulses to affected parts of the brain, resetting the brain function, making spasms disappear.
"In very few cases they make them go away right in front of you, but that is the exception. Most of the time the spasms take weeks to months," Dr. Tagliati explained.
"The DBS didn't get rid of dystonia completely. It is there it's just being fought back against," Michael said.
Despite memory loss, Michael graduated top of his high school class, and is now in law school.
"Going through that really changes a person," Michael concluded.
250,000 people in the U.S. are living with dystonia. Experts aren't sure what causes it, but say it could be genetic. Doctors say since they started treating patients with DBS, successful cases like Michael's are becoming much more common.
Michael's Miracle: Making Dystonia Disappear -- Research Summary
BACKGROUND: Dystonia is a movement disorder characterized by involuntary contractions and spasms of muscles. These actions force the body into repetitive, often twisting, movements and awkward, irregular postures. Dystonia, which may affect a single body area or be generalized through multiple muscle groups, affects men, women, and children of all ages and backgrounds SOURCE: (http://www.cedars-sinai.edu)
SYMPTOMS: Dystonia typically develops in a slow and gradual fashion, with mild symptoms. It affects muscles that may be controlled voluntarily in normal instance; it does not affect smooth muscle, as is found in the heart and bladder. Patients may begin to experience cramps, jerky or spasmodic muscle actions and loss of control of parts or areas of their body. These may grow more severe and result in the distinctive twisting and awkward postures that most people associate with this condition. SOURCE: (http://www.cedars-sinai.edu)
TREATMENT: Treatment has improved in recent years, due to successes with botulinum toxin (Botox, Myobloc) injections. Some forms of early-onset dystonia respond to levodopa and carbidopa (Parcopa, Sinemet) — a medication combination that increases brain dopamine, a neurotransmitter involved with muscle movement. Surgery is considered only in certain types of dystonia and when other treatments have not worked. With certain types of dystonia, surgeons can sever or remove the nerves controlling the contracted muscle. This may be done for eyelid dystonia (blepharospasm) or neck (cervical) dystonia SOURCE: (http://www.mayoclinic.com); (http://www.cedars-sinai.edu)
LATEST BREAKTHROUGHS: Dystonia may also be treated with a range of surgical options, specifically deep brain stimulation (DBS). In DBS, leads are implanted deep in the brain and electrical stimulation is targeted at key sites to try to control shaking, stiffness and loss of muscle control. To modulate the effect of the treatment, doctors can adjust the frequency and intensity of electrical pulses. Risks include infection, stroke-like problems, such as weakness or paralysis, and possible speech difficulties. SOURCE: (http://www.mayoclinic.com); http://www.cedars-sinai.edu)
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