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Fall 2001 Table of Contents
Versión Español de este artículo (Spanish Version)

Otosclerosis: The Silent Thief

Juanita Fletcher, Children's Caseworker
Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) , Victoria, Texas

Editor's note: I would like to thank Juanita for sending us this article. Although this disease does not usually occur in children, we felt it might be of interest to our readers. Typical age of onset of the hearing loss associated with otosclerosis is between 30-50 years of age, according to Bobby Alford with the Department of Otorhinolaryngology and Communicative Sciences on the Baylor College of Medicine website http://www.bcm.tmc.edu/oto/otologyprimer/otosclerosis/Otosclerosis.html.

I have otosclerosis. Otto what?

Like most people, I had never heard of this nasty but very common little disease. I did know that I had terrible earaches for years, but when I'd go to the doctor, they would say there was nothing wrong. I also knew I lost my balance easily, fell off ladders, and sometimes seemed to sway or stumble when I walked. I had unexplained dizzy spells.

People said I didn't listen. But how could I listen, when I couldn't hear? They'd laugh at me when I mispronounced words and ridicule my incredibly poor spelling. How could I pronounce and spell words properly when I couldn't hear part of the sounds?

Interestingly, all of these supposedly unrelated problems are caused by the same nasty disease - otosclerosis.

Otosclerosis does a lot of damage in a number of different ways. Cochlear otosclerosis causes the tiny filaments in the cochlea that transmit sound to the auditory nerve to harden and die. Stapedial otosclerosis causes a spongy, bony growth to take over the ear cavities thus locking one or all of the three tiny bones that vibrate to produce sound waves - the stapes, incus, and malus. Unfortunately, even when the growths are surgically removed, they can come back.

Otosclerosis sneaks up on you because the hearing loss is so gradual. Like a lot of people who have otosclerosis, but don't know it, I learned to informally lip-read and use facial expressions and context to help me figure out what people were saying. I did pretty well as long as the person was speaking in a moderately normal tone of voice and directly to me. If, however, they talked softly, turned away or talked behind my back, I heard nothing but random sound.

Unfortunately, just as glasses cannot correct colobomas or severe visual field loss, hearing aids can't completely correct all hearing losses caused by otosclerosis. Just as no amount of magnification will provide sight in those gaps caused by a visual field loss, amplification won't enable people like me to hear all of the sounds lost to cochlear otosclerosis. Hearing aids do help but, like glasses, they are not perfect.

To give you an idea of what it is like to be hearing impaired, here is what I might hear if a soft-spoken person said this sentence, or said it behind my back:

"Tu gi o e ida ov wat it iz lk to be erin impard, er iz wat I mit er iv a oft-oken peron er to ay tiz entnz er wr tu ay it bhnd mi bak."

Because otosclerosis can strike at any age, it's important to recognize the warning signs and get treatment as soon as possible.

Children and adults who complain of frequent ear infections when none are apparent, may well have otosclerosis. Balance problems or unexplained dizziness are other indicators of the disease. And surprisingly, those terrible, rude people who just don't listen, and kids who disrupt the classroom when they're sitting in the back and you're talking to them from the front, may not be rude or terrible after all. They just might not be able to hear because this nasty spongy stuff is growing in their ears.

Early diagnosis and treatment is crucial. Fluoride can retard or slow the damage done by cochlear otosclerosis. Surgery can remove the growths. The incus, malus, and stapes can be repositioned or replaced. Hearing aids, phone amplifiers, and other devices can help restore some hearing. Organizations like the Texas Commission for the Deaf and Hard of Hearing, and Self Help for the Hard of Hearing, provide a wealth of information about resources and support.

The most important thing is to know is that this nasty little disease exists. When a doctor tells you there is no reason for your earaches, your balance problems or your minor hearing loss, insist that he/she find a reason or find another doctor. Had I done so years ago, I'd likely have a lot more hearing than I do.


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