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Having a rare medical problem changed me as a doctor

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Something strange began happening to my voice a few months after my father died in 2000. My speech became halting and stuttering in quality, like having stage fright with everyday conversation.

The first ear, nose and throat doctor I saw told me that my voice problem was stress-related. But because my vocal cords appeared inflamed, I was referred to a gastroenterologist to address reflux and to an allergist to deal with allergies. After treatment for both issues, my voice was no better.

A different ENT doctor referred me for speech therapy. I was thrilled that the therapist made weekly home visits. But after three visits, she decided to stop working with me because, despite her efforts, her interventions were ineffective.

I felt devastated. I sought out third, fourth and fifth opinions from other ENT and speech specialists. A speech pathologist at one hospital took a video recording of my vocal cords and discovered that one of the cords appeared shrunken. Following an opinion from a laryngeal specialist, I consented to have a Gore-Tex vocal cord implant. Sadly, I was worse following the surgery.

Post-op, I received speech therapy twice a month for one year, but my voice spasms did not improve. The only remedy that provided temporary relief was intense exercise. If I ran five or six miles, my voice would be relatively normal for one to two hours. I wished I could live on a treadmill.

After seven years of dealing with my voice disorder, a new speech pathologist arrived at my hospital. He analyzed a spectrogram, or a visual representation of how my voice sounded, and noted a particular pattern indicative of a rare vocal cord condition called laryngeal dystonia. My ENT doctor then confirmed the diagnosis, as did a dystonia specialist at UCSF. 

The treatment for this condition was Botox injections directly into my vocal cords. An odd thing happened shortly before the first Botox injection. Immediately after I introduced myself to a new patient, she exclaimed, “You have laryngeal dystonia!” She had been successfully treated for this at UCLA and recognized my speech pattern right away.

My first Botox injection brought a miraculous recovery of my voice that lasted for two months. When I returned for a second injection the doctor said he would give me a higher dose with the hope that the effect would last longer. Following the high-dose injection, my vocal cords became totally paralyzed, and I was mute for a week before my voice gradually returned to normal. Several months later, when I expected the Botox to have worn off, I was amazed that the dystonia didn’t recur.

What did I learn from this experience? Probably not what you expect. 

First off, I learned to really listen.

A 2019 study revealed that patients speak for an average of 11 seconds before they are interrupted by their doctors. Time is precious, and doctors are rushed. 

Because of my voice impairment, I tried to speak as little as possible. By not interrupting my patients, I found that most answers to my questions eventually were revealed. Office visits became more efficient and relaxed, and I became fully present by focusing attention on my patients’ words and demeanor. One patient spoke nonstop for three minutes. When she realized she had not been interrupted, she remarked, “Wow, that’s never happened to me before!”

According to the National Institutes of Health, there are more than 7,000 rare diseases. Cumulatively, this equates to one in 10 Americans with one. It can be hard for doctors to diagnose a rare medical problem, particularly if they have never seen it before — or, in my case, heard it. So I also learned that as a patient, it’s important to persistently ask, “What else can be causing my problem?” 

In addition, I became more hesitant to blame a patient’s issue on stress until I fully investigated other possibilities.

It is tough to live with a lingering medical issue. Thinking back to my own difficult experience, I periodically ask patients who live with a chronic medical problem about how it affects the quality of their lives. 

In the midst of my own illness, I also looked for opportunities to express gratitude. I remain grateful today for my wife and for all of the doctors and speech therapists who tried their best to help me over so many years.

Dr. Jerry Saliman

Jerry Saliman, MD, retired from Kaiser South San Francisco after a 30-year career and is now a volunteer internist at Samaritan House Medical Clinic in San Mateo.