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Otosclerosis and audiogram question

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Hi all,

Have been thinking for a few weeks whether to post or not worried I might hear something I don’t want to hear.

Long story short, at the beginning of the year I went to have my ears micro-suctioned due to excess wax and this time around, my left ear felt clogged and heavy afterwards so I orginally thought some damage occurred since it had never happened to me before but this time I had also felt pain during the procedure.
3 and multiple tests later inc. scan, I was told there was no physical damage but I was apparently diagnosed with otosclerosis which one of my parent also has.

In terms of next steps, I keep receiving conflicting info based on my from all ENTs:

  • “Get a hearing aid in your bad ear and get on with it. You have around 10 years max and then need surgery”
  • “Your hearing isn’t that bad in any of your ears so yes it might me the beginning of the disease but you’re fine, no hearing and and no surgery”
  • “have you considered surgery now? This progresses and you might lose all your hearing to the point where no hearing aid or surgery can help”

To be perfectly honest, I can hear from both ears but my problem is this constant feeling of my left ear being blocked/full despite it being clear. I can’t remember how I used to feel before or if my brain is more focused on it now but it honestly drives me crazy and I keep doing the Valsalva manoeuvre all day subconsciously which then gives me headaches etc. To trick my head, I wear airpods all day with nothing playing since it seems to give me the feeling of better equal hearing since they kind of block my right ear a bit

I think my main concern is being told that the disease will keep progressing so I spend all day testing my ears by lowering volume in my headphones and see how far down each ear can hear…

I know the question is a bit a how long is a piece of string but:

  • I read somewhere that otosclerosis peaks at 40, is that anyone’s experience? I am 39 now and if my hearing remained like this or deteriorated only slightly it would probably be an easier pill to swallow
  • Is this feeling of constant fullness typical?
  • has anyone gone through surgery with audiogram result similar to mine? I am so confused whether it is early or advance stage or how good/bad my results are/

Thanks a lot for your time.

Screenshot 2024-02-15 at 09.45.03

7 people in this conversation7 min readJump to latest

I’ll give my take as somebody with a fair amount of medical background (retired RN) but no hearing expertise other than being a hearing aid user. I’ll also link to a couple of audiologists and see if they’ll chime in. @Neville @Um_bongo

It’s definitely frustrating getting such diverse medical opinions.
My take is that both 1 and 2 seem reasonable (Try a hearing aid or just move on) Number 3 (surgery now) seems nuts to me. I don’t know if a hearing aid would help or not as it doesn’t seem like your hearing is an issue. You do have a mild loss however in the one ear and it wouldn’t hurt to do a trial if you want to.
From reading, it looks like otosclerosis usually progresses slowly but can progress quickly on occasion. My take is that yours is very early (if truly present) and your main issue is that by obsessing about it you’re causing yourself a lot of distress. Try to let it go. Acknowledge that you’re worrying about it and let it go. Rinse and repeat. You’ll do it a LOT, but eventually it will lose it’s power over you. Consider reading up on mindfulness or seeking counselling.
That’s my take. Hopefully others will chime in.
ps. Thanks for providing and a decent amount of information.

How did your parent deal with this illness? Outcome.

Do you happen to know what your word understanding is for each ear?

If you can hear well and just have this full feeling why even consider surgery or even wearing an aid.

Relax and move on. You have the knowledge and understanding of what’s going on.

In reply to @MDB

Thank you so much @MDB for the detailed response.
As you said and I’m the first one to acknowledge it, my main issue is the feeling of fullness not the actual hearing + as a result of the news that I have otosclerosis, reading horror stories about surgeries (complete loss of hearing), no surgery (progression to cochlear thus too late) I’m sitting here numb obsessing over it and having panic attacks every couple of days.
Driving everyone crazy in my household too by constantly lowering volume down of the TV or asking everyone ‘can you hear this clearly because I can’t’ so that I get re-assurance that we are hearing the same thing.
Haven’t been able to do a full night sleep or focus at work for weeks due to stress over what’s to come, how long do I have, what to do next etc. and multiple views hasn’t helped either. :slight_smile:
3rd ENT disagreed with previous ones so I am now waiting for an .
Thank you so much again

In reply to @Raudrive

Thank you.
My mother has had hearing loss since about the same age as me but was only correctly diagnosed with otosclerosis 4 years ago and is is now wearing a hearing aid (she is 65).
Sorry I am new to all this so I don’t know what ‘word understanding’ as the above is the only type of test I had (did 2 of those and results were similar but they were only a week apart).
The hearing aid was the recommendation as the only way to improve the hearing in my left ear and thus remove this feeling of fullness (or him pushing me to an audio clinic he works with who have been a bit pushy).
Thanks again

Edited

I have osteosclerosis in both ears. I underwent surgery 24 years ago (right ear only), resulting in my right ear having a piece of gold and my left ear remaining in its natural state. I’ve encountered numerous testimonials regarding this procedure, with varying reports of success and instances of damage and increased hearing loss post-surgery. Despite the stapedectomy, I still wear hearing aids in both ears. Judging by my , I wouldn’t classify my surgery as a total success.

However, the silver lining is that there hasn’t been much change in the past two decades in my right ear, whereas my left ear has progressively worsened. All in all, I do not plan to have surgery on my left ear, though I acknowledge that my right ear is the one getting me by when I don’t wear my hearing aids. Given that this is such a hard topic to find info on, I apologize for posting a link to an external website; there are many testimonials here10.

Edit: I can only offer you what I would do if I were in the same situation as I was 25 years ago now. I would buy a good pair of hearing aids and see how things go. Hearing aids have improved considerably over the years, and they look much better too. It is important to keep your brain stimulated so you don’t lose your ability to hear in all frequencies. My mom also has osteosclerosis, and she chose to just ignore it. It’s always a nightmare to talk to her, especially on the phone.

In reply to @evan23

@evan23 said:

Haven’t been able to do a full night sleep or focus at work for weeks due to stress over what’s to come, how long do I have, what to do next etc. and multiple ENT views hasn’t helped either. :slight_smile:
3rd ENT disagreed with previous ones so I am now waiting for an MRI.

Been there! I clearly remember one I talked to giving me a rough talk: “You are going to go deaf someday.” Nah… it’s been nearly 3 decades now. Those were very stressful days. But rest assured, you are going to have a lot of tools to rely on. As I mentioned, hearing aids nowadays are incredible! I’d say they are even more effective for us folks with conductive losses. Don’t you worry, as others have said. You’ve got plenty of time to get used to your new reality and do something about it when you feel you are ready to make your move.

Edited

I have bilateral otosclerosis. Both of my ears look like your left and they have been pretty stable for over a decade. I wear hearing aids situationally, but if I wasn’t an audiologist I probably wouldn’t.

Stop doing the Valsalva. A chronic Valsalva habit can cause trouble over time. Stop checking in with people to see what they can hear. Live your life. Consider seeking professional support for what sounds like a pretty intrusive anxiety issue.

You are way too early for surgery. I wonder if they suggested that was an option just to roll the dice on addressing your aural fullness concern. Surgeons like to cut. A feeling of fullness isn’t dangerous and you’ll get used to it in time. A therapist can probably help you out.

The otosclerosis might progress and it might not, it’s not going to change overnight. Your ears are going to be just like this for probably at least the next couple of years.

I have had it for a while now. Diagnosed around 2017 , I was in mi mids 30s. Got the advice, go with it until you need hearing aid, then go with the hearing aid until you need the surgery. That has worked. My hearing on that ear has gotten worst since, but I feel it was the right advice. I still have the hearing aid and then , if needed , I would consider anything else. Specially I also heard of people whose surgury was sucessful but after 20 plus year they lost hearing again…

Hi @evan23 My father and many in his family had otosclerosis. My brother and I both developed tinnitus when we were in our 20s and were told we would be deaf like our father by the time we were 40. Neither of us were. I’m now in my 70s and have only found it necessary to wear hearing aids in the past four years. I often get a full feeling and pain in my right ear and sometimes in my left. I find inhaling steam with Olbas oil or taking Sudafed tablets or a decongestant basal spray helps. Some easy options to try which I hope will help but YMMV.

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