New treatment shows promise for people with Dystonia

What if your muscles took on a mind of their own and simple tasks brought on enormous pain? That's exactly what happened to one boy. There is now a new treatment that changed everything, and led to an amazing transformation.

For Michael Sharp, it happened suddenly.

Michael Sharp, Has Dystonia, explains how fast it came on, "It escalated to where my arm was kind of stuck like this for a few months!"

It gradually got worse over time.

Sharp explains how the disease was taking over, "I was bent forward, my neck would be tilting backwards."

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. He left school and traveled the world to try experimental treatments.

Sharp explains how the treatments never fixed the problem, "In the end, it always came back."

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.

Michele Tagliati, MD FAAN, Professor and Vice Chairman, Director of Movement Disorders
Department of Neurology Cedars-Sinai Medical Center, explains how long the treatment can take to start working, "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."

Sharp explains how he is doing after the treatment, "The DBS didn't get rid of Dystonia completely. It is there it's just being fought back against."

Despite memory loss, Michael graduated top of his high school class and is now in law school.

Sharp describes how it changes who you are, "Going through that really changes a person."

Once bent, but he was never broken.

250,000 people in the US 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.

MEDICAL BREAKTHROUGHS
RESEARCH SUMMARY

TOPIC: MICHAEL'S MIRACLE: MAKING DYSTONIA DISAPPEAR
REPORT MB #3424

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: www.cedars-sinai.edu)

THINGS YOU MAY NOT KNOW: Experts estimate that a minimum of 300,000 people in North America have a form of dystonia. Dystonia can be caused by genetic mutations, reactions to drugs, or traumatic brain injury (TBI). (SOURCE: 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: www.cedars-sinai.edu)

TREATMENT: Dystonia symptoms may be managed or alleviated by medication, Botulinum Toxin therapy, or surgery. 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, www.cedars-sinai.edu)

DBS FOR DYSTONIA: 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, www.cedars-sinai.edu)


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