Scott Adams is best known for the satirical comic strip, Dilbert, which appears in nearly 2,000 newspapers worldwide. Since 1989, the cartoonist has been skewering the corporate workplace through the voice of Dilbert, the square-headed engineer, and his hapless office mates and super-intelligent dog known as Dogbert. What is less well known about Adams—except to a small group of Americans who share his diagnosis—is his three-year ordeal with spasmodic dysphonia.

This rare neurologic condition, which affects an estimated 35,000 to 50,000 Americans, interferes with the smooth functioning of the muscles of the larynx when they attempt to produce sound, says Robert W. Bastian, MD, an otolaryngologist in Downers Grove, IL, and chairperson of the National Spasmodic Dysphonia Association (NSDA) medical advisory board. "Spasms cause the voice to sound strained, squeezed, or strangled. They can also momentarily grab or catch the voice, sounding similar to a cellphone call that intermittently cuts out every other syllable or word when reception is poor." Some people also have tremors that cause vocal wavering or find that their voice drops to a whisper.

Adams' experience began in 2004, with what seemed like a case of extreme allergy-related laryngitis. "I used to get laryngitis every May when my allergies were bad," Adams recalls. "It would usually last a few days or a few weeks and go away, so at first I didn't think anything of this particular bout."

But his voice didn't return.

After dealing with hoarseness and loss of his normal vocal tone for a few weeks, Adams went to his primary care physician. That was the first of dozens of doctors' visits and an equal number of treatments over several years. "I was diagnosed with respiratory problems. Then I was tested to rule out strep throat and acid reflux. From there I went to an ear, nose, and throat [ENT] specialist to check for polyps on my vocal cords," he recalls. "Nothing made a difference. I hit a wall."

When his voice started to cut out, Adams turned to acupuncture and herbal remedies, meditation and relaxation techniques, cough medicine, and speech tricks used by those who stutter. "I was in the 'try everything' mode, but nothing helped," he says. He also saw a neurologist, who performed a computed tomography (CT) scan to rule out the possibility of a stroke. "My brain checked out just fine," Adams says. "That's when the trail ended."

A Difficult Diagnosis

Adams' experience is typical, says Gerald Berke, MD, an ENT doctor specializing in spasmodic dysphonia and chair of the department of head and neck surgery at the University of California, Los Angeles (UCLA). "It's a pretty rare condition, and, as a result, many patients like Scott jump from doctor to doctor until they get to someone familiar with the disorder."

Experts don't know what causes the disorder, but they believe family history may increase the risk. Stress may also play a part.

Silent Despair

After a year of diminished communication and no diagnosis or treatment, despair and depression set in. Adams' inability to communicate with family or friends took a toll, he says. "I felt like I was a ghost in the room. It's hard to feel connected to others if you can't talk and they can't listen to you."

He began to withdraw, saying very little with the goal of ending a conversation as quickly as possible. "I attribute my divorce partly to losing my voice," he says. "I couldn't communicate, so any small conflict turned into a big thing because I couldn't get a word out, and, when I did, it was hard to understand."

When forced to speak in social settings, Adams resorted to a fractured version of sign language he likens to charades. "I usually changed the subject and excused myself," he says. Once a public speaker in high demand, he was forced to put that part of his life on hold.

A silent prisoner in his own home and mind, Adams stopped eating out with family and friends because waiters couldn't hear or understand him. "Seventy-five percent of the time I'd get the wrong food or drink because I couldn't communicate," he says. He also feared the telephone. "The phone was a symbol of failure, of my inability to communicate the simplest of things," he says.

His loneliness was debilitating. "Having spasmodic dysphonia can cause a weird sort of solitary confinement that no one knows about. People see you out at a social event and think you're just fine. But they don't know that all you want to do is run out the door because you can't say a word to anyone and fear someone trying to strike up a conversation with you."

At his lowest point, Adams entertained thoughts of suicide. "I rolled around a few options but was married at the time and had stepchildren, so thankfully that helped prevent me from making my exit."

Renewed Hope

The only place Adams found solace was in his office. "If I was in my office and drawing, I was the happiest person in world," he says. It was also in his office and through his drawing that he stumbled upon new clues about what might be wrong.

In 1992, Adams had been diagnosed with focal dystonia of the hand, a movement disorder that causes involuntary muscle spasms. For more than a decade, Adams was able to control the condition with rest and exercises. But in November 2004, the spasms returned, and the right-handed artist was unable to draw.

"I had muscle spasms in my pinky that caused it to go straight out, stiff," he explains. "And while I was able to control the muscles in my hand to do everything else, I couldn't draw."

Adams says the pinky spasms threatened his career. "Thankfully, being able to use a computer drawing tool sidestepped retirement, and those spasms ended gracefully," he says. But that experience helped Adams turn an "inspired guess" at what might be silencing him into a possible diagnosis.

Because of his focal dystonia, which affects a muscle or a group of muscles in a specific part of the body, Adams had also heard about vocal or laryngeal dystonia, a chronic voice disorder characterized by momentary periods of uncontrolled spasms of the voice box muscles. "I started to think that maybe my vocal troubles were spasms," he says. "So I did what every doctor would prefer you not do and started Googling my symptoms with the word 'dystonia.'"

Armed with research from the Internet, Adams headed back to his primary care doctor who connected him with Dr. Berke. "Within minutes of hearing me talk—or more accurately trying to talk—Dr. Berke diagnosed me with spasmodic dysphonia. I finally had the name of the enemy I had been fighting for years."

No diagnostic tests exist to screen for the disorder so the diagnosis is usually made by listening to the patient and thoroughly examining the larynx, says Dr. Bastian. "That's why it's important to see an expert who specializes in the larynx," he says.

Treatment Options

Once diagnosed, Adams was referred to a speech pathologist to learn phonatory tricks—different ways to produce sound that might offer a brief or partial workaround. Voice therapy helped him speak in different tones and use various mechanisms to help relax his vocal cords during spasms. "But it didn't improve my voice," he says.

Speech therapy mostly helps people understand the disorder better and compensate in various ways socially or in the workplace, says Dr. Bastian. "I have yet to see therapy convincingly alter the actual voice."

Adams also tried botulinum toxin injections into the front of his throat. This common treatment partially paralyzes the muscles of the larynx in spasm, explains Dr. Berke. "That allows the muscles enough movement to control breathing and swallowing, but can also prevent them from going into spasm and causing hoarseness, a breathy voice, or wavering."

But Adams found the injections, needed every three months, ineffective, difficult to manage, and time-consuming. "I had little to no relief after the first treatment," he says.

Choosing Surgery

After standard treatments failed him, Adams began considering a surgical procedure called selective laryngeal adductor denervation-reinnervation, pioneered by Dr. Berke in 1994. "We cut the nerve that goes to the main muscle in spasm and graft a new nerve in its place to prevent the muscle from atrophying and the old nerve responsible for the spasms from growing back," he explains.

The procedure is 85 percent effective, says Dr. Berke, who performs the operation only on patients who haven't responded to more traditional treatment. Fifteen percent of patients still do not experience relief, he adds.

Adams was willing to accept those odds. "My quality of life didn't allow me the luxury of worrying about what ifs. Having surgery was an easy decision," he says.

A few days in the hospital and three months of not speaking above a whisper while his grafted nerves grew were a small price to pay, says Adams, who had already spent more than three years struggling to communicate. Since his surgery in 2008, Adams has been free from any lingering symptoms.

Speaking Up

Grateful to have regained his voice, and his life, Adams eagerly accepted a position on the honorary board of directors of the NSDA. It's a role he takes to heart.

"I was in the rare situation of being a professional communicator with a communication problem. It would be immoral of me to walk away from this opportunity with the NSDA and to not try and help others facing the challenges I once did," he says. Along with sharing his story and being the voice of the NSDA in public service announcements, Adams has spoken at the organization's symposiums and meetings.

He also frequently connects with fellow patients on Twitter at @ScottAdamsSays and on his blog, blog.dilbert.com.