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Dystonia's Miracle Worker : * Medicine: Dr. Daniel Truong of UCI Medical Center's movement disorder clinic gives his patients freedom by treating them with botulinum toxin.

October 16, 1991|SUSAN PATERNO | SPECIAL TO THE TIMES

ORANGE — Ruth Deadmon, a near mute, waits outside the office of Dr. Daniel Truong, desperately hoping her voice can be restored.

Deadmon is typical of Truong's patients: She awoke one day with what she thought was laryngitis. It has lasted seven years. Deadmon's condition has become so severe she sometimes cannot eat. She no longer answers her phone.

After seeing dozens of doctors and several psychiatrists, Deadmon was told she had spasmodic dysphonia, one of a range of rare neurological movement disorders called dystonia.

"He's her last hope," Deadmon's daughter says as the two wait for Truong.

Roughly 100,000 people nationwide suffer from a related type of movement disorder, and until recently there was no effective way to diagnose or treat it.

But Truong, founder of UCI Medical Center's year-old movement disorder clinic, is one of a handful of doctors around the country successfully treating spasmodic dysphonia by injecting minute amounts of botulinum toxin, the same deadly compound responsible for food poisoning, into the spasmodic muscle. The drug temporarily deadens the muscle and quiets the spasm.

The toxin, marketed for the first time by Irvine-based Allergan, is being used to treat disorders affecting everything from writer's cramp to muscle rigidity so severe some people feel as though a sadistic puppeteer were controlling them.

Called botox for short, botulinum toxin varies in its effectiveness and comes with a high price tag: about $900 per course of treatment. Most users find some relief fairly quickly, Truong says.

"We call him 'Truong Man.' He's a super-hero to us," says Susan Becraft, one of Truong's patients. Truong has successfully treated Becraft for spasmodic torticollis, a movement disorder of the neck.

Becraft first noticed something wrong when her head tipped uncontrollably as she drove. The condition worsened. "I felt as though there was a little man on my nose with a string attached to my neck and he was jerking that string as hard as he could to the left. And I just wasn't strong enough to pull it back."

After one botox treatment, Becraft began to feel normal. As the months pass, she continues to improve. "Dr. Truong made my life worth living," she says. "I really thought it was going to kill me or drive me to the nuthouse."

Other patients tell the same story. Patty Johnson, a Dana Point resident and personnel assistant for the Capistrano Unified School District, went to Truong after her lips uncontrollably puckered, frozen in the shape of a carp's mouth.

Today, after botox treatments, Johnson says she believes she is cured.

Barbara Rood, a receptionist at a local college, described regaining her voice after two years "like emerging from a dark pit. I imagine it's like a blind person seeing again."

Truong counts among his patients the Newport Beach dentist's 17-year-old daughter unable to write; the Hollywood policeman who investigated the deaths of Marilyn Monroe and Sharon Tate, and a woman who was unable to speak for 37 years and now has perfect diction.

Certain similarities surface in his patients. "It seems to affect people in middle age; very often, we see it among people successful in their field. We know we can improve (their condition)," Truong says. "But we don't know why the dystonia occurs."

Those few doctors who diagnose a movement disorder correctly usually have no idea how to treat it, Truong says. "It's difficult disease to understand; the patient has normal anatomy but functions abnormally.

"A tumor is a tumor. That's easy to understand. But this is completely different."

Up until a decade ago, many doctors assumed that dystonia's symptoms indicated a psychiatric problem. Patients recount stories of spending years in expensive psychoanalysis, taking psychotropic drugs and antidepressants.

Doctors now suspect a chemical imbalance in the brain results in uncontrollable body and face spasms. But much remains a mystery about movement disorders.

Most doctors believe dystonia is genetic, but some theories suggest it is caused by a virus. Though children have been diagnosed with dystonia, the spasms usually appear among the middle-aged. And researchers have yet to determine why spasms affect some muscles and not others.

In 1973, a San Francisco doctor, Alan Scott, discovered that injecting the problem muscle with a tiny amount of botulinum toxin quiets the spasm. (Truong uses up to 300 units of the toxin; about 3,000 can be fatal.)

Until this year, when Allergan bought the rights to market botulinum toxin, no company had made the drug widely available. Hence, no effort had been made to win approval from the Federal Drug Administration for its widespread use, said Allergan spokesman Lloyd Glenn.

The FDA has yet to approve botulinum toxin for certain forms of dystonia, making it difficult for some patients to receive reimbursements from insurance companies. Today, Allergan is working with the FDA to expand its use, Glenn said, but any government ruling may be months away.

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