ST'r News Media Kit
News Room
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Contacts:
Tom Andrews
Andrews Media Ventures
(262) 673-6263
andrewst@charter.net
Howard Thiel
Executive Director
ST/Dystonia, Inc.
(262) 560-9534
howardthiel@sbcglobal.net
DEEP BRAIN STIMULATION HOLDS NEW PROMISE FOR ST SUFFERERS
Neurosurgery Helps Patients Regain Muscle Control, Improves Quality of Life
Fall 2003 Madison , WI - A revolutionary surgical technique, originally designed to treat Parkinson's Disease, is gaining momentum as an effective treatment for those who suffer from a wide variety of other movement disorders including Spasmodic Torticollis (ST). The procedure, called Deep Brain Stimulation (DBS), involves implanting an electrode deep inside the brain to give little sparks of electricity that help control involuntary muscle movements.
Among the relative handful of physicians now using DBS to treat Spasmodic Torticollis patients is Dr. Erwin B. Montgomery, Jr., Director, Movement Disorders Program at the University of Wisconsin Medical School. "You have to understand that the brain is basically an electrical device," said Montgomery . "The brain and the nerve cells within the brain communicate information and process information electronically. The brain has more in common with a computer than it does with a stew of chemicals. So it only makes sense that we should be able to affect the brain electrically. Because nerve cells communicate with electricity, we can intervene in that conversation by using the electrode."
DBS consists of implanting the electrode, which contains four electrical contacts, into various targets within the brain. These probes send tiny impulses of electricity into the brain from a pair of pacemakers inserted under the skin of the patient's chest. "What we think may be happening in disorders like ST and Parkinson's Disease is that there's miscommunication occurring among these nerve cells. By stimulating the brain, we can override that misinformation and, in fact, it appears that the brain does better when there is no information than when there is misinformation. We may be actually affecting the way brain cells communicate with each other."
Spasmodic Torticollis (ST) is a neurological disorder with abnormal movements of muscles that can be very forceful, extremely painful and can literally change a person's life. Part of a larger family of neurological disorders called dystonias, ST usually starts slowly with a small pain at the base of the neck. The situation gets worse week by week and is then followed by rotating or pulling sensations and severe pain. The pain gets so bad that normal, everyday activities like sitting, standing, walking, standing, eating or brushing teeth can become extremely difficult to nearly impossible. Further complicating the entire situation is the fact that most ST victims end up losing their jobs or have extreme difficulty getting their health insurance plans to pay for treatment. Insurance problems can occur even if the patient keeps his or her job because the in-house insurance company and its staff are totally unfamiliar with this condition.
While DBS has been shown to be very effective, it's still quite new in the treatment of ST. So far, less than 100 patients with ST have undergone the operation but Dr. Montgomery believes DBS will gain much wider use in treating ST in the months and years ahead. "We're still trying to get a good handle on what kind of patients will be the most appropriate for this therapy. But it's important to note that the FDA has approved the use of Deep Brain Stimulation for the treatment of ST."
"The FDA's approval of DBS for treatment of Spasmodic Torticollis is very good news," said Howard Thiel , an ST victim and the executive director of ST/Dystonia, Inc. "It's an expensive operation, between $50,000 and $100,000 and now insurance companies will pay for it. Though it might not help all ST patients, we're very excited about what this procedure will offer in the coming years."
About ST/Dystonia, Inc.
ST/Dystonia, Inc. was founded in 1989 by Howard Thiel and Harry Chobanian to help people who suffer from ST and other forms of dystonia to become improved human beings, provide them with hope for the future and to help them readapt into society. It is dedicated to informing people that there is no need for despair because there is much hope and help for ST patients and their loved ones. Currently, the organization has about 2,100 members worldwide and offers a number of benefits and services including a quarterly newsmagazine, a 30-page Oral Medication Booklet, annual symposiums around the United States and Canada, private for-members-only archives/library containing all of our magazines going back to January 1999, a kit which enables people to obtain disability, and much more.
Editor's Note: Dr. Erwin B. Montgomery, Jr. and Howard Thiel are both available for interviews. Additional information about spasmodic torticollis (ST) is available at www.spasmodictorticollis.org or by calling 1-888-445-4588.