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Health & Wellness: Battling Spasmodic Torticollis
A raft on a rough ocean
by Andrea Novotny
January 1, 2007
Like most women, Kathie Stehr of Acworth has been a do-it-all kind of mom and wife. She had a
full-time career, shuttled the kids to activities, kept up her home and took care of ailing, aging
parents. But these typical stresses have taken a physical toll on Stehr, primarily due to a
debilitating, painful condition called Spasmodic Torticollis.
Referred to as ST, or sometimes Cervical Dystonia, the movement disorder causes Stehr's neck
muscles to fight her every move. She has Rotational Collis where her head pulls to one side. If she
tries to turn it back, a tremor kicks in and she has to hold her chin to stop it. For years, this
53-year-old suffered alone as she battled her body.
"I felt like I was in the middle of the rough ocean on a raft all by myself because I didn't
know anyone else with the strange symptoms I was having," says Stehr, who has endured ST for more
than 20 years.
Although she had a mild tremor (involuntary head shaking) since age 15, Stehr attributes her
ST onset to two car accidents three weeks apart in 1983. She was diagnosed with "cervical strain,"
or whiplash, and began pain medications and physical therapy. But the pain persisted and the
pulling and tremors worsened. She became depressed and experienced major flare-ups during times of
high anxiety as she continued her demanding and stressful career as a nurse. Stehr had no control
over her neck muscle movements; she felt no one believed her pain was real and she had nowhere to
turn.
Stehr's story is very typical of those with Spasmodic Torticollis. Many take years to get to
a diagnosis and proper treatment due mainly to the fact ST is not well known among general
physicians. However, results of a recent prevalence study by expert doctors indicate that ST may
affect more than one million people in the United States. Furthermore, those who treat ST say it
affects three times as many women as men, suggesting it is a women's health issue.
"We believe that there are hundreds of thousands of people in this country who have some
degree of Spasmodic Torticollis, are suffering in pain and don't know what exactly is wrong," says
Howard Thiel, who is the executive director of the non-profit association ST/Dystonia Inc.
(www.spasmodictorticollis.org; 1-888-445-4588), whose mission is to help individuals get to a
faster diagnosis, effective treatment and ultimately a better quality of life. Thiel, who himself
has fought ST for more than 25 years and tried to escape his agony twice through attempted
suicides, wants people to know they are not alone. "More importantly, we need the medical community
and the general public to recognize that ST is a very real movement disorder with very debilitating
effects, much along the lines of MS or Parkinson's Disease," Thiel says.
Spasmodic Torticollis is a neurological condition that researchers believe is caused by the
release of excessive chemical messengers from the basal ganglia area of the brain. These increased
nerve signals travel to certain muscles of the neck sparking spasms and causing the head to turn or
pull in one direction or another. The result for many is severe pain and lack of mobility. Thiel
says people are embarrassed by ST, are often depressed and in many cases lose their will to go on
with life.
Since doctors don't know yet what triggers ST, there is no cure. But Thiel wants people to
know there is a way to calm symptoms. The most successful and simple of treatments is injecting
botulinum toxins - commonly known as Botox¯ or MyoblocTM - into the neck muscles to interrupt or
"paralyze" the affected areas. Dr. Matthews Gwynn of Atlanta Neurology PC
(www.atlantaneurology.net) is one of the leading neurologists in the Southeast helping patients
through injections. Gwynn has treated scores of ST patients with botulinum toxins over more than a
decade, one of the first of whom was Stehr.
"These toxins help ST patients make a miraculous transformation," says Gwynn. "It takes a
person who has a debilitating movement disorder, which is tremendously disruptive to their self
esteem, straightens them up and makes them normal again."
Patients need only have injections once every three months and the success rate is between
90 percent to 95 percent. The increased purity of Botox has helped the success rate in recent
years, he says. Stehr found some relief with the help of these injections in the early 90s. But
unfortunately, she is among that five to 10 percent who develop immunity to the substance.
For those who can't be helped by injections, there are two surgical techniques that can be
tried. Selective Denervation involves partially cutting some of the nerves connected to the neck
muscles as a way to alleviate the symptoms. For the most serious of ST patients, the surgery of the
future is Deep Brain Stimulation, which involves implanting electrodes in the brain to stop spasms
- a pacemaker of sorts.
Since she's not a candidate for surgery and nothing else worked, Stehr has become her own
life's pacemaker. She's taken control and adopted a multi-disciplinary approach to managing her ST.
First and foremost, she takes time to care for herself and has learned to not overdo it. She's
adopted better eating habits, takes vitamins and supplements, has an exercise and stretching
regimen and uses bio feedback. She uses a medicine patch to manage pain in a controlled manner in
order to avoid addiction.
For others who may have ST, Stehr urges them to find a neurologist specializing in movement
disorders, get on the Internet and research the condition and, most importantly seek, out support
from others like the ST/Dystonia association.
"You have Spasmodic Torticollis. You won't die from it, but you have to learn to live with
it," adds Stehr, advice she hopes will reach others who still find themselves out on a raft in the
middle of the rough ocean.
Andrea Novotny is a freelance writer living in Madison, Wis.
