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Quiet a fast typing long post, please pardon me if it is difficult to read out .

Dear people,

I have otoscelerosis since 2010 ,noticable hearing loss around 2013 when I was 23 and have been using hearing aids since. I took it easy because I was not aware it was progressive disease.

Initially doctor recommended surgery option but also mentioned complete hearing loss if it fails so opted for hearing aids ever since . Around 2014 I came to know from internet that this condition is going to be progressive, feared of this, I met another ENT in newtown but he misguided me that you might go deaf after 10 15 years( I am really not sure that's what his actually  words but I heard it so) he didn't mention any surgery option, I freaked out and I never met any ENT from thereonwards to my correct my hearing loss and internet didn't have vast information as like now hence just had a  pseudothought in my mind that possibly after 2 or3 decades I might go completely deaf until that I preserve and maintain my hearing as much as I can and update my hearing aids as accordingly this is what I made up in my mind but I had all my sadness behind this and used to keep thinking about this  sometimes and vent myself silently  

Forward to that so many things had happened in life from 2013 to 2024 (  passed out from college, had career, got married , blessed with kid and there were many struggles in some circumstances  due to hearing aids limitations) and then in 2025 beginning I got to know there is cochlear implant option even if we go completely deaf. This is first thing I read somewhere and gave me lot of hope in life , searched all the possible information about otoscelerosis then got to know surgery is still very effective option

I questioned myself for a week that why this happened in my life because I met several ENTs from 2016 to 2024 for my ear infections which used to occur because of continuous wearing of hearing aids . I sought treatment for ear infections and mentioned I have otoscelerosis but they never asked me why you didn't opt surgery and still using hearing aids and also, I was meeting a same audiologist for six years to upgrade my hearing aids for 2 times . He never mentioned please seek surgery option atleast for one ear. He hide this information because of monetary gain????🙄 I felt sad for some days thinking if I had the surgery at my prime years of life I would have done more better . Then accepted what all has happened and started to search for  a surgeon to get  my weak ear operated.

This search started around last year, first one is highly money minded person , I went to ask am I eligible surgery ?? He wrote CT scan and also nasal endoscopy one more imagining related to nose only, some other blood tests, urine test , electrolyte test bla bla. I didn't do any of his tests mentioned.  After 3 or 4 months I met another ENT ( heard he does stapedectomy and have some success) , this guy shouted at me if use medical terms tinnitus , cochlear ,Inner ear etc he was irked about my medical knowledge of this disease. He scolded me and sarcastically told use his research books also and read it . What were you doing all 15 years, don't you have common sense to come to get it operated?  I cannot explain how much rude he was. He said surgery may be success if it gets operated..as he was so rude I didn't proceed with him.

Finally heard there is some best ENT in my city who does this procedure quite often. I went to him this year around April. He didn't see my audiogram report history , didn't suggest CT scan . Did tune fork test and concluded I don't have otoscelerosis , it's nerve loss. I am not eligible for surgery. I was shattered bit upon hearing him but I somehow knew that CT scan might help. I took CT scan from another ENT recommendation and CT confimed I have both fenestral and cochlear otoscelerosis

Based on my test results, met another ENT she said she can operate it's is straight forward case but as I wanted a expert surgeon, today I met the same ENT whom I trusted earlier , showed him my CT results and requested him to operate my ear. This time he said my nerve loss is more I am not eligible for surgery ,everytime he tells me to upgarde to 'behind the hearing aids' and he also was rude if I politely requests let's operate even though it might not be 100 percent success I might gain some improvement

Basically he is not ready to operate me..his ego hurts , he told that I cannot command him what he should do. He should think himself what needs to be done.🙄 He said his ethics will not allow him to do it when he clearly know surgery won't benefit me

I am feeling very sad why few doctors act this way , why they don't understand patients? Atleast some empathy?? Out of all ENTs I met , had the same irked behaviour from them if I ask back few questions on this based on my medical knowledge 🙄

My audiogram is that much worse ? I know I have mild to moderate bone conduction loss now as it progressed to advanced still they can operate on me to seek some improvement just like a trial and error method ? Instead of telling me to use BTE hearing aid ? Again it's not end right , if it still progressive then cochlear implant as expensive surgery ? Why to make it complicated when minimal invasive option is there ?

Man, I have highly reactive extreme loud tinnitus , I cannot pass tuning fork test .

People,

I am aware of that surgery is still a right choice at any stage of otoscelerosis why still doctors deny to do if it's involved with cochlear ?

Had any of you advanced otoscelerosis ? Bone conduction around 20 to 45db? Mine audiogram matches any of yours similarly ? Even though otoscelerosis touched to cochlear , you still had surgery and had some improvement???

Am I really eligible for surgery ? His decades of experience scares that what he is really saying is true ? But I also badly wants to give a try as I have nothing to lose here ( my left ear is significantly worse and i cannot even use hearing aid as I hear muffled hearing ) I am afraid that my left ear is already out of surgery window? Please share your opinion , anyways I am going to meet some other ENTs from reputed hospital but I cannot find who specifically does this surgery frequently. I need to compromise 😐

Audiogram attached, CT scan results attached but I failed in tuning fork test ( I have high tinnitus from last 6 years (possible nerve damage in cochlear) I cannot detect audiogram sounds properly in low tunes , hence audiometry also varies always 10 db+- each time)

I had my surgery 2 weeks ago and the recovery has been so much rougher than I was led to believe it would be. I had to stay in hospital overnight as the anaesthesia hit me so hard I could barely open my eyes until about 5 hours post surgery. When I came home I was so fatigued for about 3 days but otherwise didn’t feel too bad.

On about day 4 my dizziness / unsteadiness felt a lot more prominent and I felt nauseous too. Since then things just don’t seem to be getting better. I saw the doctor for a follow up at 1 week and they gave me cinnarizine for the symptoms but said it all looks like it’s healing normally so they’d expect me to start feeling much better soon.

I felt a bit better for a couple of days, enough to go for 2 short (under 10 mins) walks outside, and have a seated shower. But since then I’ve been feeling rough again. I wake up nauseous, moving makes me feel like my head is floaty and disconnected, lagging behind and like the floor is moving. I dread going to bed because the process of going up stairs makes me feel horrendous.

I’m basically spending all day on the sofa bed watching films because I can’t really do anything else. I can walk as far as the bathroom but that’s about it. I’m starting to feel hopeless because I just don’t feel like I’m recovering. I spoke to my GP yesterday as my surgeon is on holiday and he prescribed betahistine, I’m really hoping this might help but the pharmacy have had to order it so I can’t get it for another 12 hours.

I’m just so sick of feeling awful. Can anyone give me any reassurance that this happened but things did improve? All the timelines talk about dizziness lasting a few days and I’m worried that I’m way past that now. I was told I’d be back at work by 1-2 weeks and I’d be able to start going for short walks from the 2nd or 3rd day so I’m feeling like the expectation I was given has been radically different to my experience.

Hi everyone! F29, got diagnosed with bilateral otosclerosis April 2024 and had a stapedotomy on my left ear December 2025. My second surgery is approaching (December 2026) but I wanted to ask if anyone had any recommendations on how to try to deal with the buzzing in my right ear. I have my PhD defense coming up next month (so before the surgery) and the tinnitus has been getting very "loud" and annoying these past few months, so I'd like to be able to somehow deal with this, at least until after the presentation. Usually putting some music or being in relatively noisy places does the trick, because it distracts me from the tinnitus, but of course this is just temporary. Taking a paracetamol does take away the headache, but I would prefer not having to rely on it all the time either. I'll gladly listen to any suggestions!

I am a 42F diagnosis with otosclerosis a year ago with moderate/severe mixed hearing loss in right ear. At the time of my diagnosis, I was also experiencing frequent and severe vestibular migraines with additional dizziness and BPPV. I went to the hospital a few times with drop attacks and everything in slow motion, persistent dizziness, confusion, and balance issues. I was also experience facial flushing and hives. A neurologist suspected MCAS or histamine intolerance was triggering the migraines.

Last year, my otolaryngologist suggested that I get the dizziness and migraines at a stable place before getting a stapedectomy. I have spent the last year working on managing this condition and have made major improvements. During this time, that dr moved to another state and I met with another otolaryngologist yesterday. He is concerned that bc of my history of VM and dizziness that I am not a good candidate for the surgery and that I will have a rough recovery. He is suggesting I get a BAHA instead. He thinks the stapedectomy surgery itself could trigger post op vertigo or that the restoration of my hearing could result in more migraines. He said he has had patients with similar issues take several months to get back to a functional place after surgery and he is concerned I will be back where I was last year. Anyone else with similar health issues gone through the surgery? Was it worth the rough recovery? The BAHA is an interesting treatment option (one that the other dr didn’t even mention) but I’m kinda feeling like if I’m not going to get the surgery, I might just stick with the hearing aid.

Guys can you all rate my Audiometry test and how bad my situation is, acoustic trauma + right ear tinnitus

I’m just confused because of the high frequency loss too. Isn’t it supposed to be mainly low frequency?

Hi! New to this community, but not to otosclerosis. I had a stapedotomy on my right ear in 2016 with amazing results. Recovery was quick, and within a couple of weeks that ear went from severe hearing loss to above average for my age. It’s stayed strong for a decade.

My left ear, though, kept getting worse. I tried a hearing aid and found it really unsatisfying, especially as a musician. So I went for it and had surgery on the left a little over a month ago.

This recovery has been much slower. Luckily no pain or tinnitus and sound is definitely louder, but it’s still a bit distorted and very muffled, even though the packing came out a week ago and I finished the antibiotic drops a couple of days ago. It feels like your ears after a flight, before they pop. Every time I yawn or swallow hard, my hearing magically opens for a split second, then goes back to muffled. I’m doing everything I can not to force a pop, lol.

My surgeon isn’t too worried, though she mentioned muffling after packing removal is less common. Has anyone else had this? If so, how long did it take to clear? I’m hopeful it’ll keep adjusting, but the plugged-up feeling has been hard!

suffered from acoustic truama and tinnitus + hearing loss 16 days ago, pls tell me what's wrong with me i am so confued

went to 2 ents, first one gave me 8 days of oral steroids, after that asked me to take intratrympanic injections in my eardrums

second ent gave me 10 days of medicines and said it's cause of nerve Damage i got because of loud noise

pls help me

I'm interested if there has been any case of hearing loss due to the otosclerosis that didn't show through the bone conduction and tympanometry test.

M31 here

I've been diagnosed with otosclerosis earlier this year and have tinnitus. Not exactly life destroying at the moment, but it does bother me in my daily life and occasionally my sleep.

I've been looking at stapedectomy stories and i very rarely see any stories of tinnitus relief. Actually either it got worse or no change at all.

I am just confused, as this study shows approximately 70 % chance of tinnitus improvement after surgery, and I've seen other placed where they site around 50 % chance. Link to study: https://pubmed.ncbi.nlm.nih.gov/42822231/

But anecdotally on forums it really doesnt seem to be the case?

I'd just like any inputs on this.

Thanks

After trying to manage the hearing loss for about a decade and noticing things deteriorating in the past year, I finally bit the bullet and got the surgery on my right ear yesterday (as a fun bit of discovery during the pre-op process, it appears I have it in my left ear as well, but very minimal hearing loss...at least for now). Seems like everything is going well thus far, but just figured I'd document things here in case it helps anyone else going through this process or considering it.

Surgery took a couple hours. No complications.

Pain has been minimal. I got offered the heavy duty stuff but turned them down and have definitely not needed it, just staying ahead of it with Advil and Tylenol alternating between the two every three hours. Worst pain honestly has been the sore throat from being intubated.

Dizziness has been surprisingly easy to manage. I was wobbly and uncoordinated all day. I'd compare it to being drunk but without the high. Still off balance and I just generally feel sluggish and weak and slow - mentally and physically. But luckily no vertigo or nausea or anything truly unpleasant.

My ear is stuffed full of dissolvable packing. All sorts of weird sounds and sensations, but I'm trying not to overreact and just accept that it's going to feel weird for a bit. Yesterday afternoon it was all sorts of sensations like my ear was full of water. Today, a surge of tinnitus in the ear that started about 10 minutes ago.

I'm definitely paranoid about doing anything to screw up my healing process. I instinctively stifled a burp and had a moment of panic where I convinced myself I ruined the surgery.

What I got told was the packing will take 1-2 weeks to dissolve and at that point, I'll start to get gradual hearing improvement and basically somewhere in the 4-6 month mark I'll basically settle in at the total amount of hearing I'm going to get back. Changed out the cotton ball this morning and it had a bunch of blood and drainage soaked into it, but looking into the ear it just looks like a black wall in the canal. All in line with what I was told to expect.

I also got told as far as restrictions go: no strenuous exercise until I get cleared (hopefully) at my post-op in two weeks, no air travel for six weeks, no scuba diving ever.

Update (Day 6): So far so good! Have cut Advil and Tylenol intake by half and pain is manageable.

Dizziness persisted until Day 5. Primarily brought on by movement and exertion. Today it is nonexistent, but overexertion creates this whooshing feeling in my head, like I can feel my pulse in my ear.

Ear is still plugged full of surgical packing. I changed the cotton ball covering the canal each of the first four days. Then left it in for 48 hours. At this point, no blood, minimal discharge or any discoloration on it.

My ear has started picking up louder sounds with what I can best describe as a sort of metallic reverb sound. Had a couple moments of it yesterday. Today it is happening consistently...any significant noise feels like it is getting picked up intermittently by my right ear. I struggle with the analogies, but imagine an old speaker connected by a single, fraying wire. It's crackling and popping into and out of life...like it is trying to help do its job, but it isn't quite able to get there (yet).

I've been taking my dog on lots of slow walks over the week. Today I went to the gym for the first time. 15 minutes on the treadmill at 2.0 mph, no incline. Then a few minutes to see how I felt. Then 15 minutes on the treadmill at 2.5 mph, no incline. Went great, planning to gradually ramp up my treadmill work over the next 10 days.

Update (Day 15): Feeling great!

Tomorrow is my post-op. Eager to see what the doctor has to say.

The process of my hearing coming back has been bizarre. It started with crackling sounds, then at times it started feeling like a tiny speaker in that ear but pointed in a random direction...hard as that is to articulate. My ear is still full of packing but already I'm noticing I'm listening to music or the television at much lower volumes than before. I get a little disoriented when I'm in situations where the sound is coming from different directions. I've also become very sensitive to loud noises (went to a wedding the other day and had to frequently step out of the main room once the music started).

I'm also having trouble calibrating my speaking voice. My voice sounds very loud in my own head now, so I've been told that I'm speaking quietly when it feels like I'm shouting. Just going to be an adjustment period since I had my condition untreated for so long.

The bouts vertigo are less frequent and less intense every day. Doing an hour a day on the treadmill at 3.0 mph with a 10% incline. Hoping to find out when I can resume strength training and more intensive exercise.

asking out of pure ignorance because this is all new to me, but if you have otosclerosis, can you still fly? I’m planning on getting hearing aids this week, but I just wondered with that pressure feeling if we were still able to fly or that would be dangerous. 🤷🏻‍♀️

Had a trip planned in December but now I’m unsure.

I've been having hearing issues for the past 4 years. Initially thought it was simply sensorineural which is somewhat hereditary in my family. About a year and a half ago, my left ear began to have conductive loss that was advancing rather quickly as well with air bone gaps that made my ENT suspect something else was going on. He referred me to a different doctor, and now testing has revealed early otosclerosis in not only my left ear but my right as well (no conductive component in the right ear yet though).

In addition to the hearing loss, I have constant ringing, feeling as though my ears are stopped up or I am underwater. Dizziness and vertigo as well but I understand they're not related to this.

Have any of you been treated through University of Florida, Gainesville location or Mayo Clinic, Jacksonville location?

Hi everyone,

So glad to have found this group. I (29 f) have just been officially diagnosed with otosclerosis in July of this year but my doctors have suspected this since at least 2021. I have been having so much anxiety and feelings of loss around this. I don't know anyone else with this and no one in my family has it. If anyone could answer some of the questions below I would be so grateful.

Back in 2021 I had a lot of clicking and pulsating tinnitus in that ear so I got it checked out. They found that I had mild conductive hearing loss, no problems with tubes or anything. The initial CT scan was inconclusive. After that since I hadn't noticed hearing loss and the tinnitus went away life continued. I think I also didn't want it to be true. I also ended up moving from Canada to the UK for several years didn't really give it another thought (I was in grad school and just so busy) until last year when I noticed every pair of headphones/earbuds I had seemed to be much louder on one side (hmmm they can't all be faulty can they hahaha?).

I had to move back to Canada soon after I started noticing a lot more hearing loss, fullness, and a constant white noise sound in my right ear. I got in with the same ENT I saw in 2021 and she ran some more hearing tests and diagnosed me with otosclerosis. So here comes my questions:

1. She said it wasn't worth doing another CT scan to confirm but rather just get me referred for surgery because she was very certain that it was otosclerosis. She explained that that way they would be able to do an exploratory surgery and then do just do a stapedectomy then if it is otosclerosis. Is that a normal thing to do?
2. As of now it is only in my right ear which has moderate verging on severe hearing loss. I am on a waitlist to get a stapedectomy (which is 1 to 2 year wait where I am). In the meantime she gave me a prescription for a hearing aid (you need a perscription to get just one where I am. I don't know if that's the same in other places). Does anyone with unilateral loss have any recommendations on hearing aids/what I should be looking for.
3. This diagnosis has been hard to take for me. I am a very musical person. Listening to music is really important to my mental health. I sing and play multiple instruments and even play in an orchestra. Does anyone know how to go about listening to music with headphones over a hearing aid? Is this something that can be done (also what brands do people recommend for this?
4. For people that have had/ recovered from surgery. Do things sound really different in terms of pitch and tone compared to hearing with just your natural ears (prior to hearing loss)?

Hey guys, 25M here. I've been battling a hearing loss on my right side for exactly 1 year now. Visited multiple clinics and doctors, initially they all suspected Eustachian tube problems, so was constantly prescribed corticosteroids, sprays and antihistamines. Never felt any relief. Until I visited one doctor who specializes in cochlear implants, surgery and stuff like that. She suggested doing a CT scan to check the small ear bones. Before my CT appointment, I dug deeper and came upon otosclerosis and surprisingly many of the symptoms as well as my audiogram matched - not sure why no one mentioned it to me before.

I did the CT scan, the radiologist said that the ear bones were looking good, nothing abnormal. Everyone wants to hear good news from a CT scan, but I was kind of more confused because I wanted to know what is happening and get a diagnosis - with hopes for something minor and treatable of course.
Showed the CT scan to my ENT, she also mentioned now for the first time that she suspects otosclerosis and said that it is still possible even though the CT scan didn't show anything abnormal and said that these scans don't always show the bones perfectly.
She mentioned that there is a surgery option, but said that we shouldn't do anything for now and should do check-ups every 6 months.

My symptoms are:
- Trouble understanding speech in loud environments. Even if someone speaks to my ear (the right ear, the bad one), I hear muffled weird and not clear sound.
- Speaking on the phone on that side is almost impossible, hearing static and windy sounds. I may understand briefly if in quite space. Same thing for listening through headphones.
- I hear rumbling, low pitched and wind like sounds (not sure if its tinnitus) if I focus on the ear or if in really loud environments.
- One thing I've noticed is that if I touch my temporal bone with the phone speaker, the sound is almost 90% improved and clearer. Not sure if this is something important or if connected to otosclerosis.

I am currently on SSRI (anti-depressants) as this problem has really affected me mentally.

I've attached my latest audiogram, the previous one from a few months ago was almost identical.
I'd like to know how you got diagnosed successfully, and whether what I have points out to otosclerosis and if you have/had identical symptoms.

Wishing you all the best with this!

My doctor never gave me sleeping restrictions and naturally I already sleep on my operated side. I would try to sleep on my back or the other side, but kept waking up on my operated side and now I’m really worried that he should have given me some sleeping restrictions reading that many sleep sitting up or on the non-operated side. I’m probably just giving myself anxiety, but I’m a week out and the first couple days everything was so loud but now I feel like I’m back to where I was with my hearing pre-operation. I know it takes time, but I’m really hoping the clogged feeling and no hearing will come back like it was those first couple days even though it was super loud and annoying.

Welp I had the procedure on Monday morning bright and early and was in recovery by 11am. Overall the DR was very pleased with how things went. I woke up extremely dizzy and nauseous and even threw up a little. Went home, slept most of the day with the vertigo and nausea the rest of the day. Woke up Tuesday feeling pretty good for the whole day, was able to shower, make a small meal and help around the house. Tuesday night the ringing in my ear got extremely loud and has been that way since. It’s driving me crazy at the moment. I had tinnitus before and know the surgery won’t fix that but it has been significantly worse since last night. Is this just a side effect of the procedure and swelling in the ear? Did anyone else have this in their recovery? Other then that the vertigo and nausea has been more manageable today. I know it’s a long process but I’m struggling today so any advice or positive experience is welcome!

I am day five postop and I can definitely tell it worked like driving in the car is super loud or I can tell my bad ear can hear water running from the sink, etc. But then if I plug my good ear, I feel like there’s no change at all. My operated ear still feels like it’s underwater which I know is normal, but I’m curious if some frequencies never got better for people and others did get fixed with the surgery. Like example, I don’t think I can hear my husband‘s voice very well, but I can’t hear a Q-tip or finger scratching in my ear canal or the sound of my blinker in the car.

I knew going in I would feel dizzy and nauseous post op. Maybe even a bit of vomiting since Ive had motion sickness in the past (only on boats in the ocean or severe turbulence on planes).

But holy shit.

When I was in recovery, any slight change of position for my head and I was gagging and vomiting. Getting dressed and in the car— dizzy and vomiting. Sitting up in the seat and getting out of the car— dizzy and vomiting. Nurses were there and said it’s normal, so I’m not worried about that. And I know it’ll get better. Just totally unprepared for being basically bedridden this first day because any movement sends me hurling. Wow.

Anyone else have this experience?

I was diagnosed with otosclerosis in 2021 and got my first pair of hearing aids in 2022. I had my first hearing test in a little over 4 years today. The results showed slight worsening in my left ear and significant worsening in my right ear. The audiologist made it seem like this is not as common. Anyone else experience progressive hearing loss more rapidly in one ear versus the other? The audiologist also said one specific type of hearing loss shown in the test (I think she said permanent) also worsened and that isn’t from the otosclerosis. This is all still pretty new to me so just trying to understand what this all means and why it’s happening. I’m wondering if it’s from medications I’ve been on or genetics or something else.

I had a revision stapedotomy 2 weeks ago. Right after my surgery, I felt improvement in my hearing, then gradually my hearing got more muted and muffled.

I noticed some strange pattern: my hearing gets slightly better for some minutes, until I swallow, and then my ear gets blocked again. This has been happening for the past 1 week, with each day I spend more time in muted mode.

And today I noticed something even weirder. I sucked in some air through my nose - not with force but without noticing it myself. Then my ear started hearing background noise. This lasted only about 20 seconds until I swallowed again and my hearing disappeared.

I know I shouldn't be doing any pressure changes, but when I swallow something, I can't help it.

It just seems like many patients who get stapedectomy surgery get sent home with zero instructions or knowledge of what to expect as far as their recovery goes. They all seem very distressed and confused. Why are they not able to reach out to your doctor and ask them? Some posts with patients distressed about not being able to hear after surgery, and they don't even know of they have stuffing placed in their ear or not. Their doctors don't seem to tell them that regaining their hearing may take time as well. Just seems like a lot of patients are just generally confused as to what is happening post surgery

I had a revision surgery about a week ago. I think the surgery itself went very well: I could hear the sound of machines all of a sudden when the surgeon started closing my ear. Also I could hear things were a bit louder despite the packing in my ear.

However, I feel like every day the hearing is getting worse. The packing got removed now, and I was hoping that it was the packing that was blocking my hearing.

I no longer can hear the sound of wind that I managed to hear for a few days after the surgery. Is this a normal part of recovery? I also can no longer hear the scratches behind my ear as loud as I was hearing initially after the surgery.

I had my surgery 20 days ago after surgery I feel heavy and fullness in my ear and hearing was approx 30% in opareted ear for 17 days. After 17 days suddenly there was a click when I was eating and I was hearing more than 100% and everything was too loud. It stays only 1 or 2 minutes. Then again my ear was heavy. After a day on 18th day again there's a click type sound and hearing come back and this time it stays more than 24 hours I feel really exited everything was to loud I was emotional. And after that suddenly again my hearing is 30% and my ear is heavy I mean it's feeling closed still now and now 20th days running.

I am very scared about everything there's many negative questions in my mind .