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.
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.
While botox works for most, it is no cure. Patients must return every three to six months for repeat treatments.
Some people have antibodies against the toxin, which negates its effects. “How many . . . we just don’t know,” says Truong. And doctors have yet to discover any long-term side effects.
“Who (cares) about the side effects?” says Gretchen Greenberg, a Mission Viejo homemaker who suffered with uncontrollable neck spasms for 20 years before finding relief from botox. “If it hadn’t been for (Truong),” she says, “I’d have killed myself.”
Truong blushes when the story is repeated. “My patients and I are very close,” he says. “They call me whatever time they want, day or night.
“I learn from them. They are my best sources of information. I see the patterns in their symptoms and accumulate information. My patients are my teachers.”
To explain their conditions, he often mimics their behavior. “Some patients, they walk around like this, like a bulldog,” Truong says, leaping out of his chair to imitate a bulldog’s distorted trot, mouth wide and tongue wagging.
“And Patricia (Johnson). We call her a ‘Fish Called Patricia.’ She had a mouth exactly like a goldfish,” he says, puckering his lips to demonstrate.
Some might find Truong’s humor offensive; not his patients. “Most of us think he’s really funny,” says Becraft. Besides, she adds, “he eats, sleeps and breathes dystonia.”
Truong, 41, is a researcher obsessed. He works six and seven days a week. He gladly gives out his home phone and fax numbers and calls his secretary countless times a day for copies of his research papers (“Double-Blind Controlled Study of Botulinum Toxin in Adductor Spasmodic Dysphonia,” for example).
He encourages media attention and has invited several television cameras and newspaper photographers into the operating room to record the botox procedure. Because only 1% of those who need botox are receiving treatment, he says, “it’s very important to make people more aware.”
Truong’s devotion to research comes from a “compulsive personality,” he says. He first became interested in medicine as a teen-ager growing up in Saigon. At 17, he won a scholarship to study psychiatry and neurology in Germany.
His parents--a government official and a lawyer--left Saigon after its fall to North Vietnam. They now live in Canada.
In the last decade, Truong studied under leading movement disorder experts in the United States and England before being recruited to develop UCI’s movement disorder clinic.
“I never really thought about why I do it,” he says. “First you become interested in something. Then it becomes a part of you.”
He is sitting in the a UCI conference room, waiting as nurses prepare Ruth Deadmon for her first botox treatment. She has arrived with a large broach pinned to her dress that spells out Jesus. Before Truong begins, Deadmon prays. Her lips move, but she is silent.
Truong explains why Deadmon cannot speak: The muscle connected to the vocal cord goes into spasms, causing the cord to clamp shut.
The procedure begins. Another doctor injects Deadmon through the throat with an anesthetic. She gags and coughs, causing the anesthetic to spray around the inside of the airways and pharynx. The doctor inserts a scope down Deadmon’s throat, a sort of flashlight to help Truong search for the problem muscle.
Truong injects a Teflon-coated needle into Deadmon’s neck, asking her to speak at certain points to help him locate the correct muscle group. Once found, he squirts a tiny drop of toxin. The procedure takes about 10 minutes.
“The first time is really scary,” says Barbara Rood, a botox veteran, who held Deadmon’s hand to calm her during the procedure. “I remember swearing I’d never do it again. But once I got my voice back, I realized it’s a small price to pay.”
Deadmon, shaking, with tears in her eyes, nods doubtfully. Deadmon’s daughter asks when her mother would talk again.
“In about four days,” Truong tells her. He turns to Deadmon. “Call me tonight at home at 10 so I can hear how you’re doing.”
Two weeks later, Ruth Deadmon answers her phone.
“I’m ecstatic!” Deadmon says in a clear voice. “To be able to pick up the phone and speak. Maybe it doesn’t seem like much to anybody else, but to me, it’s a miracle.”
For more information, write or call: National Spasmodic Torticollis Assn. P.O. Box 873 Royal Oak, Mich. 48068 Phone: (800) HURTFUL or: National Spasmodic Dysphonia Assn. PO Box 266 Birmingham, Mich. 48012 Phone locally: (818) 889-6100