r/otosclerosis

30F, just got diagnosed

Hi, new friends! I made this post a few months ago because I had suspicions of otosclerosis given the result of my Apple hearing test. Since then I've had a real audiogram (which looked very similar to the Apple one) and a CT scan that confirmed "otospongiosis in the fissula ante fenestrum." I have no family history but I am young, female, and white which apparently fits the demographic profile to a T.

My hearing loss is around 30 dbHL in both ears, worse at lower frequencies, and I also have pretty severe tinnitus but it mostly doesn't affect my daily life and I can use my AirPods as hearing aids when I really need to, they work pretty well.

I have had two surgeries in the past few years, including one on my TMJ very close to where the ear surgeries would be* and the idea of two more sounds really exhausting especially because I have always been extremely healthy so all these sudden random issues are overwhelming. Of course I am talking to my doctor about all this but do we think I can get away with waiting a while to get the surgeries? Like, waiting a decade or more even??

Another snarl in this whole thing is that I am trying for a baby, as in literally started trying this week. According to Dr. Google it seems pregnancy can make this condition way worse. Does anyone on this sub have experience navigating otosclerosis during pregnancy? I really do not want to put my major life plans on hold for this. I'll use hearing aids if I have to, lol

Anyway just wanted to ramble a bit and also introduce myself since I have a feeling I'll be getting to know this sub pretty well. Thanks in advance for any advice.

*i am 100% confident the TMJ issue is not related to the hearing loss, my post history has some more info about it but it was only on one side whereas my oto is fully bilateral.

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u/nrvs_hbt — 3 days ago

▲ 3 r/otosclerosis

Warning signs?

Hey all-

I’m 32 y/o female, my mother has cochlear otosclerosis and wears hearing aids. She began losing her hearing shortly after I was born. In her 30s she started experiencing vertigo which slowly led to her loss of hearing. Now in my 30s I am experiencing awful vertigo. I just learned otosclerosis can be hereditary and is more prevalent in women. Does anyone have experience with symptoms which led to your hearing loss? What would you recommend as a first step with talking to a Dr about?

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u/Effective_Luck_573 — 4 days ago

▲ 4 r/otosclerosis+2 crossposts

Otosclerosis and SNHL

Hi
I'm a 23 M and I've recently been diagnosed with Otosclerosis in my right ear. For the longest time I have been suffering from profound hearing loss in my left ear (which was formally diagnosed when I was aged 12) but have had normal hearing in my strong ear without facing any issues or like strong tinnitus. Since the past year (2025-26), I've been facing higher than normal tinnitus that had been diagnosed by my ENT and was wavering with intensity as the year went by. But off-late, I've been facing difficulty with conversations as well as grasping sounds that I could earlier hear (like the ticking of the clock, light rain outside when the window is closed); Somehow it still got resolved with a combination of steroids and antibiotics. However since March '26, I've been complaining of the same muffled hearing and it led to a diagnosis of Otosclerosis being the main culprit leading to a 20dB conductive hearing loss in my right ear. This coupled with profound deafness in my left ear has led me to go a little crazy but also curious as to finding anyone who is going through the same or similar condition. I hope it's resolved or at the very least can be adapted to go through normal living. Thank you for listening/reading through a bit of my rant!

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u/This_Friendship_3871 — 7 days ago

▲ 6 r/otosclerosis+1 crossposts

recent diagnosis of otosclerosis

I am 25 years old and was recently diagnosed with otosclerosis. I had never noticed hearing loss until a few months ago when I was talking to colleagues and they said I wasn't hearing them. I finally decided to see an otolaryngologist; I went to three doctors, all with the same diagnosis. My audiometry results are below. I am about to graduate from medical school, and the diagnosis has taken the ground from under my feet and taken the shine off everything. Not being able to hear people is cruel. I feel lost and extremely confused because the information I see about the disease varies greatly. One doctor recommended surgery, but two others said I might not benefit from it. I already have moderate mixed hearing loss. I have been trying hearing aids for a few days, and adaptation has been extremely difficult. I feel lost and like I've lost a part of myself.

u/Forsaken-Rhubarb1615 — 9 days ago

▲ 3 r/otosclerosis

How common is oto spread?

Hi all,

So I (21F) got diagnosed with oto around the start of this year and have been wearing hearing aids ever since (i love them alot!) And personally, having hearing aids doesn't bother me. I know sign language and live and work in the Deaf community so its not out of my world anyways, unlike a majority. However, my surgeon told me that if I wanted surgery in the future it may be possible it spreads to the cochlea and a cochlear implant may be a solution. I'm absolutely terrified of it spreading to my cochlea as there is no way I could be a sign language interpreter with that level of loss.

Has anyone here experienced this? Is there any way to prevent it or slow down the growth?

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u/Maximum_Confusion_ — 9 days ago

▲ 6 r/otosclerosis+1 crossposts

Hearing loss again after stapedectomy after my first flight

About 5 years ago, I was diagnosed with otosclerosis. It completely turned my life upside down. Eventually I started wearing a hearing aid in my right ear, which had worse hearing loss and tinnitus.

After years of research, I finally found a surgeon I trusted and underwent right-ear stapedectomy in October 2025. The results were life-changing. For the first time in years, I could comfortably participate in group conversations again and stopped needing my hearing aid. I finally felt normal again socially. I was extremely careful after surgery and avoided strenuous activities for months.

Then in April 2026, I took my first flight after surgery. The night before the flight, I went to a DJ event and got very drunk (I did wear high-fidelity earplugs). I have always had severe “airplane ears,” where my ears block badly during flights and take days to recover.

After the flight, my hearing became severely muffled. I waited several days expecting it to return to normal, but it never fully came back to the way it was after surgery. Pulsatile tinnitus has become louder.

Two weeks later, I took the return flight home, and the muffling worsened again. I started steam inhalation and took Ebast-DC prescribed by my doctor.

The hearing improved partially, but not back to baseline. I got an audiogram done and saw my surgeon. Compared to my previous audiogram, there was around an 8 dB decline. He told me it was not a major change and prescribed calcium and vitamins.

I still felt uneasy, so I sought a second opinion from another reputed surgeon. Another audiogram showed roughly a 12 dB decline from my post-op baseline. He said this could possibly be related to Eustachian tube dysfunction and prescribed Allegra and Fluticone FT nasal spray for a month.

I have only been on the medication for 4 days, so I know it is too early to conclude anything. But mentally I am really struggling. At work I catch myself staring at people’s faces during meetings trying to follow conversations again. Today I briefly wore my hearing aid for the first time since surgery, and emotionally that hit me very hard.

Has anyone here experienced hearing decline or muffled hearing after flights post-stapedectomy? Did it improve with time or treatment? Any kind of help, advice or shared experience would genuinely mean a lot to me right now.

u/guitasan321 — 10 days ago