I recently saw a Neuro-Otologist due to my experiencing dizziness. I am deaf in one ear and wear an aid on my good ear.   I was relieved to find out that there’s a difference between dizziness and spinning and therefore, a diagnosis of Menieres was able to be ruled out. However, the Doctor was quick to note that my Otosclerosis might be spreading and deteriorating the temporal bone in my good ear.

It’s sort of humorous that I’ve known since I’m 19 years old, that I have Otosclerosis and that its a progressive disease.  However, when the Doctor at that time told me I would be deaf by the time I was 30 and did not go deaf, I ruled that the Doctor had no idea what I truly had.  And so, years have gone by and only recently, have I noticed my tinnitus had become incredibly loud  along with dizzy spells. 

The current Doctor explained that my audiogram looked as if I had Otosclerosis and that I would need to have a cat scan on my good ear.  He was concerned that the Otosclerosis may be spreading, possibly causing me to lose hearing and feel dizzy.  Though I had a hearing evaluation 8 months ago, he asked that I get a more recent one done.

Well, yesterday I did just that and the results were that my hearing went from mild to severe to moderate and profound.  Shock and disbelief almost gave way to denial, but being in the field of working with deaf and hearing impaired, I knew I had to deal with this and be as realistic and prepared as possible.  I was now very close to the severe range in my low frequencies when I was once on the upper mild range.

In two weeks I’ll have a cat scan and hopefully some news as to how much bone deterioration there is and if I am too lose more hearing, what time frame am I looking at.

What are my fears?  Well, first off, that I’ll never hear music again, that I’ll never hear my friends voices and worse, I won’t hear myself or my breathing.  I’m not running scared but I need to know what I’m dealing with or what I will be dealt.  The fear of being alienated and islolated from people is very real and though my girlfriends quickly responded with, “we’ll learn sign language,”  I know that girls night out won’t be the same.

For now, I want to feel that I have choices, that my options to wear a hearing aid successfully will be realistic and that control of my own life won’t be lost to dependence.


  1. You can take this for what it’s worth.

    I’ve had a severe-to-profound hearing loss for all of my life. I use speech, not ASL, as my primary language and I’ve survived so far. I’ve taken advantage of much of what technology has been able to provide.

    We each go thru losses as we go thru life. It’s how one copes with a loss and can move on that defines what and who you are.

    I can’t hear my breathing or my own voice without a HA, but I know I breathe.

  2. I have a 1 yr. old daughter with SN hearing loss. In addition, my uncle-in-law also has otosclerosis. He has a severe to profound loss on both ears and functions very well with hearing aids. He participates in conversations at a our busy Sunday dinners. I wish you the best of luck in your journey.

  3. To Ann C: I had to laugh when you stated you can’t hear your own breathing without a HA, but you know you breathe.
    I guess that made me realize how we take things for granted. I have not been in the severe to profound range bilaterally though I feel that way when I take my aid off at night. I love to sing when I’m alone, I love to listen to all types of music, I love to hear the voices of my friends, my children and even my tinnitus. I love to hear the ocean when I walk on the sand, I love to hear the birds on a beautiful spring day. I take none of these things for granted and though I may not hear all the notes in my son’s saxophone playing, I love to feel it in my heart.

    The truth is, I will eventually cope with the loss because of who I am, but I will be redefined and evolve into a different person as a result of that loss. Who that person turns out to be, I’m not sure. I can only hope that I will come out stronger.

  4. Thanks for the update!! So glad Menieres has been ruled out…

    If you’ve lost your hearing over time, you are constantly facing redefinition. With every hearing dip I’ve had, it’s as if I’ve been grabbed by the ankles and pulled under the water and it’s a fight to break free, to get back to the surface so I can breathe again.

    The point is… I do. It may take longer to reach the surface than it did the previous time, but somehow I know I will get there, and when I arrive, I’m still me – deep in the heart of who I am, I’ll always be me, just as you will always be you. And the people who love us, really love us, will help us to remain who we’ve always been.

    You’re always in my thoughts…

  5. I am new here and I am so amazed at all the different stories of HOH people ~ This one, in particular, touches my heart. I’m HOH (mod-severe) all my life and sometimes think about what I am “missing.” Michael J. Fox says it well, stating the daily motto he lives by: acceptance and gratitude.

  6. I’ve been suffering from deafness almost all of my life as a result of an ear infection. It’s been getting worse and worse and I’m scared I will go totally deaf this year. It’s devastating to think I won’t be able to hear my dog bark someday. 🙁 Or hear music.

    I still haven’t learned to cope with it, and I don’t tell many people about it. My Mother blames herself for my deafness. >__<

  7. I have had a hearing test and I have hearing loss, but I almost do not want to believe it. I have had infection in my ears and problems, also tinnitus for many years. Does it sorta feel like you are underwater, or in a bubble? I want to think it might be something else, but I also might be in denial. Doc says I need hearing aids, tried some on and I freeked out that I could hear things that I have never heard before, do they do that so you will buy aids? Can any one help me please. On some levels I have lost 50 percent of things I could hear. I am 55 and know I am not a spring chicken anymore, and yes I always have to ask people, “What did you say”, have to turn the telly up really loud, but it seems like this last bout came on really quick after an ear infection. This level on not hearing only seemed to happen after that infection, help anyone.

  8. Altho I’ve been diagnosed with Otosclerosis, I’m not sure whether I’m in denial of it or whether it is a misdiagnosis and what I may have is perhaps minor permanent hearing loss due to an untreated ear infection; my hearing goes awol when I have a sinus infection. It has been an almost year long expedition to try to understand why my hearing fluctuates from 100% in my left ear and only loss of certain low tones in my right hear to having to lip read & ponder whether I should invest in hearing aids. It has been frustrating and very energy-absorbing.

  9. My daughter (18) has early onset Otosclerosis and has worn a hearing aid for 3 years now. (Ironically, I have a masters degree in Audiology from Gallaudet, though I haven’t worked in the field for several years). Her hearing has been pretty stable, and she does really well with her aid, but I’m concerned about what’s coming. She graduates high school in May–received a scholarship and invitation to attend the Drama Conservatory in NYC. Her goal is musical theater, which doesn’t seem all that practical under the circumstances. Still, I’m not going to tell her not to try! I enjoy reading everyone else’s stories. Best of luck to all!

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