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Tracing the origin of my hearing loss

If like me and you experienced adult late deafness  (I was 29 years old), do you remember who you were and what life was like before your hearing loss? Do you have any clue as to what may have happened to cause your hearing loss?

Lots of things might have happened, of course, and many of them we may never know more about than we do now. My hearing loss was caused by the dreaded sudden sensorineural hearing loss (SSNHL), but the possible causes include: “infectious, circulatory, inner ear problems like Ménière’s disease, neoplastic, traumatic and acoustic (head an ear), metabolic, neurologic, immunologic, toxic, cochlear, idiopathic (unknown cause), tumors, medications and other factors.

Unfortunately, even after a thorough search for a possible pathology, the cause of sudden hearing loss remains unknown in most patients,” according to Hughes et al.

Yes, we know. That’s quite a list of suspects for hearing loss causes, and thinking back, a number of those things could certainly have played a role in the first 28 years of my life. I noticed, however, that genetics was not on the list. My father, older brother and his daughter experienced their own hearing loss after I had, but it was not SSNHL in any of those cases.

Between 1978 and 1985 I lost not only hearing in both ears but the sight in one eye (blood vessel related) and almost the other, again to an unknown cause(s).

For a time, doctors were looking at syndromes but nothing definitive ever came up. Tracing back, I’ve always wondered if there was a trigger or multiple triggers. Something I may have missed or ignored. A weakness somewhere. Not only in my ears but in some other aspect of my health. Perhaps one day we may know much more about the causes of hearing loss, maybe even enough to prevent or resolve it in many more cases.  

What were my hearing loss causes?In the meantime, all I have to go on is what I know – which is considerable actually. There were many clues. 

At birth I weighed more than 6 pounds, but lost weight rapidly the first two weeks of my life. A priest was called in on two occasions because it didn’t look like I was going to make it. I later learned that I was not “tolerating the formula,” as I was not breastfed. My mother had a condition that the doctor’s said precluded her from breastfeeding me. No, not a good thing at all – but that was then.

I also grew up with parents who were life-long smokers and lived in that haze for the first 18 years of my life. But did my mother smoke during her pregnancy with me? Given the times they lived in, the probability is, “yes.” As you may know, there are many studies suggesting hearing loss in infants and adolescents associated with smoking during pregnancy. But I wonder too if smoking during pregnancy might not also cause the underdevelopment of good circulation to the ears predisposing someone like me for hearing loss later on in life, if not at birth.

I remember vividly one of my ENT’s asking me if my mother had had syphilis during her pregnancy – not an easy question to ask your mom. Syphilis has been implicated in both infantile and ALD if transmitted  from the mother to the child. My mother did not have syphilis during her pregnancy.

Other factors, however, fit. Though I was a relatively healthy child, there were ear infections, and full disclosure, I was skinny. So thin, in fact, that my parents had to tie my bathing suit strings  around my neck for the first 2-3 years of my life, as it would not stay up otherwise. Stop laughing.

Teen_DreamNevertheless, throughout my youth and through college I was a successful athlete and champion runner. But that didn’t save me either. So I am left with several additional things that I do know may have played a role in my hearing loss.

The facts are these: One spring afternoon in April 1978 I came home after a music recording session and took a nap. When I woke, I stood up off the bed quickly, only to have what sounded like an air horn go off in my left ear. I fell over and a lifetime of hearing loss and tinnitus commenced. Within two days I had lost most of the hearing in that ear.

Then in 1980, while painting my apartment, I stood up quickly and that air horn set off again, but this time in my right ear. Within hours I was profoundly deaf. My ENT put me on steroids immediately to quiet things down, but I was now in serious shape with poor hearing in only one ear.

Looking for further help and a cause, I set off to meet other ENT’s to see what I could find, including the House Ear Institute in California. They suggested I may had suffered blood vessels bursting in both ears, but other than that I came away with little more than when I started.

There’s more. As a musician my entire life – and a professional from the time I was 18 – noise was certainly a factor. Though I played acoustic instruments and the piano, I would often record or perform with a band and other instruments. I spent a lot of time in the recording studio between 1972-1980 both as a solo artist and as an ensemble jingle singer wearing headphones covering both ears.

Though technically I do not have a noise induced hearing loss, I do believe that all that noise was stressing, if not weakening, my hearing and my inner ears.

I also remember Meniere’s came to visit on one or two occasions, and just one year before I lost my hearing I contracted strep throat. Was I given ototoxic medications that later did the deed? I wouldn’t have known then to even ask.

image3_(4)One thought that has never left me was the notion I learned from many of my teachers along the way – that everything we experience with our health has a cause somewhere, somehow even if we cannot find it, see it on a cat scan, MRI or in a blood test. Things – probably a conspiracy of many things – happened. And not just in the ears. The head bone is connected to the neck bone. And so on.

I look at it this way – whatever it was/is had 29 years to develop. I don’t believe it came out of the blue on a warm April afternoon in 1978 or while I was painting in 1980. There was a path. And that path had many stepping stones.

Have you tried to trace your hearing loss causes? Let me know what you find out. It might help us all to understand more.


Author Details
Stu Nunnery is a professional writer, musician, composer, actor and activist. In 2013 he began a years-long journey to return to making music after a bilateral hearing loss ended a successful career forty-five years ago. Taking advantage of cutting-edge technology, auditory training and vocal work, he resumed performing in 2017 and made his first new recording in 2018. Recently, Stu also completed a screenplay about his musical journey. A graduate of Princeton University, Stu has studied piano, voice, acting, improvisation and public speaking. He is a member of the Association of Adult Musicians with Hearing Loss, and for his activism, is a Phonak “hEARo” and a “HearStrong Champion.”