Spasmodic dysphonia: A rare but treatable voice disorder

Sanford patient had trouble speaking on the phone and even in person for years

Voice disorders and treatments. Grandpa and grandson sing and play a duet in the child's room, with grandpa smiling and playing guitar and grandson smiling and playing cymbals.

Botulinum toxin, or Botox, is best known for the way it can make facial wrinkles less noticeable.

It has more uses, however, as Deb Dahl and Sanford Health ENT specialist Dr. Brent Nichols can attest. In this case, that involved treating Dahl’s spasmodic dysphonia with Botox injections and dramatically improving her quality of life.

Spasmodic dysphonia is a voice disorder that involves spasms of the muscles in the voice box. It can render people essentially speechless.

When Dahl, a mother, grandmother and great-grandmother, visited with Dr. Nichols at the Sanford Broadway Clinic in Fargo, she’d been dealing with profound speech issues for more than four years. There were countless visits to specialists without answers and treatments without success.

Because the disorder is so rare, proper diagnosis can be elusive. There are only a few cases per 100,000 people according to the National Spasmodic Dysphonia Association. It has no known cure, no known cause and affects women more than men.

Dahl’s voice worked fine for much of her life, but then she began noticing changes. Communicating with family members was often reduced to texting over the phone. Her younger grandchildren and great-grandchildren did not understand why talking to her was so difficult.

In the meantime, she suffered in silence. Not that she had much of a choice, of course.

Spasmodic dysphonia discovered

“I couldn’t talk on the phone because no one could understand me,” Dahl said. “My voice was like static on the radio. I could not through a drive-thru for food or go through a bank drive-thru. Even talking to a person face-to-face was difficult. I’d have to try so hard to make the effort that my muscles and my stomach and my throat hurt.”

A visit to Dr. Nichols changed that. He suggested a possible treatment she had not tried yet.

“Botox has pretty broad applications,” Dr. Nichols said. “It goes well beyond the cosmetic application, which paralyzes facial muscles so you don’t see a wrinkle.”

Normally, when people speak, they’re pushing air from the lungs between their vocal cords. The air pressure causes the cords to vibrate, creating a voice.

When someone is dealing with spasmodic dysphonia, the muscles inside the voice box spasm involuntarily. It is a neurological disorder caused by abnormalities in the brain that send the wrong messages to the vocal cords. It can radically affect the ability to speak.

“Botox does not act on the brain. It acts on the voice box,” Dr. Nichols said. “It is partially paralyzing the vocal cords so that they can’t spasm.”

Botox is not a cure for this disorder. Once every four months or so, Dahl goes in and gets another shot. That can be followed by few days of throat discomfort and then she’ll be fine for months. Typically, those with the disorder need to visit every three to six months for another injection, which goes through the neck into the larynx.

Botox treatment makes a difference

The procedure can take some getting used to but the payoff can be huge.

“It makes a difference in peoples’ voices,” Dr. Nichols said. “I also think they get used to it and look forward to the improvement in their voices.”

Dr. Nichols would call it an example of a correct diagnosis and treatment. Dahl would call it a miracle.

“It took about 48 hours to kick in,” Dahl said of her first successful treatment for spasmodic dysphonia. “I remember my daughter stopping over. It was the first time I’d actually talked to someone with my normal voice in a long time. It was like ‘Oh my God, this is my normal voice.’ It was crazy.”

Tears of joy

Her first call was to her speech therapist, who made a recording of Dahl’s voice and sent it to Dr. Nichols.

“Dr. Nichols told me he had tears in his eyes,” Dahl said. “He couldn’t believe how much better I sounded after two days.”

She called every one of her children that day as well. It was good news delivered in the best way possible.

“My daughter in Colorado actually cried right on the phone,” Dahl said. “We hadn’t been able to talk on the phone for four years. All I can say is that Dr. Nichols is a miracle.”

More stories

Posted In Ear, Nose & Throat

Leave A Reply