Voice-robbing ailment yields to new therapy GBMC is first locally to offer toxin treatment.

June 06, 1991|By Sue Miller | Sue Miller,Evening Sun Staff

The Greater Baltimore Medical Center is finding lost voices for people afflicted with a strange disease that leaves them with garbled speech and often speechless.

Specialists at the Towson hospital have performed a new voice-restoration technique on five patients who have suffered the debilitating effects of spastic dysphonia, or involuntary, uncontrollable spasms of the vocal cord muscles.

GBMC is believed to be the first Baltimore-area hospital to offer ,, the non-surgical treatment, which has won Food and Drug Administration approval and is no longer considered experimental.

"One of our patients had put up with this frustration for 40 years," said Dr. Samuel Lumpkin, the GBMC ear, nose and throat specialist who injects a toxin into the vocal cord muscles to block the spasms. "If you can find your voice, I think that's pretty exciting."

He was to reveal details of the new therapy at a news conference today at GBMC.

Women, who are affected more than men, are not objecting to one short-lived side effect that shows up in two days -- a faint version of a low, breathy voice reminiscent of the sultry Marilyn Monroe.

The technique involves one injection of tiny amounts of a lethal food poison, botulinum toxin, through the neck into the laryngeal muscle on each side of the larynx, or "voice box."

Two days after the injections, the patient's vocal cords become paralyzed. This results in the breathy voice, which a week or two later gives way to a fairly normal voice.

But, the results are not permanent. Patients must return for maintenance doses every three to six months, although some patients have been known to go as long as 10 months without a repeat procedure, Lumpkin said.

No serious side effects have emerged from the injection technique after large clinical trials conducted by both the National Institutes of Health and the Columbia Presbyterian Medical Center in New York. But the injection material, marketed as Botox, is a toxin, and long-term studies have not been conducted with spastic dysphonia patients.

About 13,000 Americans have been diagnosed as having spastic dysphonia, commonly called SD.

But Mary Payton of Baltimore, who developed the problem five years ago, says, "No one really knows how many people may be sitting in their houses leading less than completely free lives, who did go todoctors who misdiagnosed them or said there was nothing wrong with them."

Payton, director of continuing education at Essex Community College, personally had been told by one Baltimore throat specialist that her condition was "stress-related" and was advised to see a psychiatrist.

Instead, she went from doctor to doctor in the area seeking help. Finally, a surgeon she knew sent her to Columbia Presbyterian Medical Center, where hundreds of patients from across the country get the injection therapy. Since last July, she has had four treatments. The most recent treatment took place at GBMC May 27.

"Voice is probably one of the parts of us that most definitely defines who we are as a person, both in our minds and in other persons," Payton said.

"I wasn't mourning the fact that I had had this marvelous voice which I no longer had, but what I was having difficulty with was the fact that I was losing communication. And you reach a point where there are so many things that you just avoid. The condition is very physically draining."

Her most serious side effect to date, she said, was losing her voice completely for about a week on a couple of occasions after treatment.

Even something as simple as answering a telephone can become a painful struggle for SD patients, Lumpkin said. For some reason, the neurons that control the muscles are overactive and force the vocal cords to clamp shut. Then, SD victims must exert enormous physical effort to push air through the vocal cords and produce any voice at all.

By injecting Botox directly into the affected muscles, Lumpkin and Dr. Riad Khalifeh, a GBMC neurologist, can stop messages from the brain that tell the muscles to overact.

Until recently, the treatment for SD was surgery, cutting the nerve to a vocal cord -- a drastic remedy that after five years had to be repeated.

Now, the alternative therapy can be done in about half an hour on an outpatient basis in a doctor's office under a topical anesthetic. First, a flexible scope is inserted down the patient's larynx so that the specialists can examine the larynx from the inside. Neurological exams also are conducted.

"It is very important to give these injections very precisely, so an EMG [electromyography] machine is used to guide the injections into the proper muscle," Lumpkin said.

GBMC charges $500 a treatment and reimbursement is variable, depending on the insurer. The hospital also runs the only area SD patient support group, which draws people from Washington, Virginia and Maryland, and is linked to a national network.

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