What’s in a Name?

Ever since I first lost my hearing, 35 years ago, I’ve been frustrated by the fact that no one could figure out what caused it. As the hearing loss progressed to the point where I finally got a cochlear implant in the originally affected ear (the left) and a strong hearing aid for the right, I remained fixated on how such a major medical event could happen with no explanation. The term for that is “idiopathic.”

Webster’s defines the word idiopathic as “arising spontaneously or from an obscure or unknown cause.” It also means “peculiar to the individual.”

I hauled out Volume One of my “shorter” OED (two volumes, 4000 pages, three columns per page) looking for insight into the origin of the word. Not surprisingly, it comes from the words “idio” and “pathic” – “of a disease.” The OED elaborates: “not consequent on or symptomatic of another disease,” and then the kicker: “no known cause.”

So imagine my surprise this afternoon when my ENT of some 25 years casually dropped into a discussion of my hearing that the fluctuations I was experiencing were common with Meniere’s. “Wait,” I said, “Does that mean we are now diagnosing this as Meniere’s?” Believe me, I have asked this question many times and never gotten a firm answer.

You know why? Because Meniere’s itself is idiopathic. In fact it’s also known as “idiopathic endolymphatic hydrops.” This mouthful refers to an imbalance in the fluids in the endolymphatic system, part of the cochlea. The symptoms include fluctuating hearing loss (most often unilateral), fullness in the ears, tinnitus, and dizziness or vertigo. I pointed out that I don’t have two of the symptoms (fullness or tinnitus, and I have bilateral hearing loss). My vertigo, which was intense, was also short lived: I had about 30 episodes over the course of a calendar year. Now it’s controlled by medication.

My doctor explained in what I am sure was very clear language why he was now using the term Meniere’s to describe the cause, but I was too thrilled to finally have a name I could put on my hearing loss to really follow.

So what if Meniere’s itself is idiopathic? (It’s also not treatable, and not even fully diagnosable except during an autopsy.) I have a name for my condition! I can capitalize it. Capital “M” Meniere’s. It has a definition and known symptoms. After 35 years of “we don’t know” this seems like a step toward enlightenment.

The fluctuation that prompted this discussion was, for once, a good one.

In July I’d felt that I was hearing much worse than usual in my hearing aid ear. (The hearing in the cochlear implant ear changes only when the audiologist reprograms the implant.). I went to the audiologist and indeed I had lost about 20 decibels, going from being able to hear at 60 decibels down needing the sound turned up to 80 decibels. That put me in the category of a potential candidate for a second cochlear implant. But my ENT wisely prescribed “watch and wait.”

So six weeks later, today, I went back. My hearing had returned to where it was before the July drop. Not that that level is anything to boast about: I still have moderately severe hearing loss and a moderately terrible ability to recognize words on a word recognition test. But no matter. My fluctuations in the past have almost always been permanently downward. “Up” isn’t something I can recall ever happening.

So maybe that’s another reason I was glad to have a name for my condition, one that starts with a capital letter.

One thought on “What’s in a Name?

  1. Katherine – That is wonderful that you finally received an explanation as to your hearing loss. An audiologist told me that my hearing loss could be attributed to a number of factors: genetic deafness in my father’s extended family, chronic childhood ear infections, ototoxic medication, and noise exposure while working without earplugs for two years in a loud printing press room (this was before OSHA came in and mandated earplug use where I worked). Regardless of the cause of my hearing loss, I can celebrate any person finding what has caused his or hers.

    Shanna Groves


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