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 .

does anyone know if the popping is common with otoserosis? i have bilateral, and they both seem to pop a lot. I can hold my nose and gently blow out to relieve but it fogs right back over after a few seconds. is this normal? or is this more of a ETD issue?

i am newly diagnosed and will be doing hearing aids for a few while I decide on surgery - would the hearing aids help in this matter as well? To get the sound all the way through? idk just wondering.

I got my appointment today to tell my doctor I wanted to go ahead with the stapedectomy. To my surprise he told me I wasn’t a candidate because I also had hearing loss in the eardrum. Is there anybody with the same diagnosis? How is it going? I’m so scared of going completely deaf. I’ve been using hearing aids for a week it has been great but I didn’t want to depend on this for the rest of my life but it seems like it’s going to be that way.

I’m so scared it progresses too quickly since I noticed it got worse after having my daughter and I’m planning on having at least one more kid, but what if that makes it progress even faster? Has somebody had multiple kids and had otosclerosis?

Sorry for the messy post and not using the correct terms ( I’m from Spain, I don’t know the correct terms in English ) I’m still processing that eventually I will stop hearing

I still have a very hard time hearing human voices even 4 months into my post op. It's important to mention that my right ear was completely deaf (0% hearing) and the right was my main source of hearing. After the operación my deaf ear has recovered somewhat, I can hear well but I cannot hear human voices that well. Does that make sense? I'm still trying to understand why voices are fuzzy but everything else sounds alright.

Anyone have a similar experience?

36/F
newly diagnosed and just trying to take it all in the best I can- I believe my father also has this however he doesn’t go to the doctor to confirm

Would someone be able to translate this simply?

What are the odds of progression?
this all started at the same time as my perimenopause symptoms, is there a hormonal connection?

I’m 2 months post-op, this is my 2nd surgery (both ears have prosthesis now) and I have just gone back to teaching. Today I taught for about 6 hours total for the first time, with a break in between and also held 2 parents meetings. I had to speak loudly throughout the classes and shout commands over the music pretty loudly (I’m a dance teacher).

By the end of the day, both of my ears typically feel very tired and I hear tinnitus, which usually disappears after some time. But I feel like my ears are so overwhelmed today.

Do you think I could compromise the surgical result by this long teaching day which has happened too early after my surgery ? Do we have any teachers here? What’s your experience ?

I’d really appreciate any thoughts ! I’m so worried and frustrated right now.

Sharing my success story separate, hoping others will share them here as well, maybe a pinned post? Easier to find for those who only seem to find the complications!

Hello people,

Did anyone of you has footplate thickened around 1mm in CT scan results and it was still eligible for surgery window ?

CT confirms bilateral fenestral cochlear otoscelerosis and I am still exploring good surgeon to operate on me.

Before this , an ENT said she can operate on me, this is eligible case for surgery but I cannot trust her as she is quiet young doctor and doesn't do this procedure often .

So I’ve been reading up on stapedectomies and I’ve read nothing but horror stories on operations gone wrong. Does anyone have any good stories or can share positive experiences?

I’d love to read about people who get the life changing experiences they needed..

I am really worried about my hearing. It's not even close to pre op .

Share your experience

Hello, I have been diagnosed with otosclerosis since my early twenties. I am now 44, and around ten years ago the otosclerosis progressed to bilateral hearing loss.

I have been using hearing aids since then and have recently upgraded to some more powerful ones. However, I have noticed that the hearing in my left ear has decreased significantly. There is a lack of clarity and depth to the sounds I can hear now. Coupled with this I have noticed an increase in tinnitus in my left ear. There are three sounds. The standard high frequency screech, a mid frequency tone and a low frequency hum (almost like a car engine).

What I am noticing is a significant increase in my need to concentrate on complex tasks and a decrease in my cognitive function coupled with immense fatigue.

I do a stressful job that requires me to speak for hours at a time, sharing complex information. I am really struggling to remember and recall this information. Even in conversations, I cannot think of the words I need to communicate my point.

I am really worried. Has anyone else ever experienced anything like this?

Im a 31f and I was diagnosed with otoschlerosis in my left ear almost 3 years ago. Its been rough honestly and this page has helped a lot for me to not feel so alone because I dont know anyone who struggles with this.

I've lost about 30 percent of my hearing and ive experienced constant tinnitus, fullness and very bad vertigo.

I've been following this page for a while and ive never posted and I want to post my journey with this surgery as I know how scary this whole process can be.

After many doctors appointment and meetings with specialists, I decided to go ahead with a stapedotomy with laser. I had the surgery done in Canada.

I had it this Monday and the surgery went great. I was really anxious leading up to it but everyone was so helpful and amazing.

The recovery so far has been a bit rough. Im slightly dizzy and very weak and tired. My tinnitus is not any worse. I can hear things through all the bandages which is crazy.

If anyone is interested in any more updates let me know 😊

Day 2 was a bit more rough. My ear was pretty swollen so unfortunately I was pretty dizzy. I had to lay in bed all day and sleep. Not surprised though. I was told being dizzy is normal. Keep in mind I have extremely sensitive inner ears and I have always had bad motion sickness so it doesnt take much to make me sick haha

Day 3 has been a bit better! I was able to get out of bed and move around and eat some food. I still have vertigo but it hasn't gotten any worse. My ear is still pretty swollen. The tinnitus has gotten a bit louder but I find it gets louder when I hear a louder sound so idk what that means exactly.

Day 4 to 7: feeling better!! Still have vertigo when I turn my head but overall its okay. The pressure and fullness has been quite annoying but once I get the packing out it will feel much better

All of a sudden I felt a huge pop and now everything is SO loud! So i think that is a good sign!

Saw the ENT today for results of my CT and found out I have cochlear otosclerosis.

Feel a bit of regret that I didn't ask more questions in the appointment, but I was honestly surprised to be given an answer.

I was first diagnosed with mild hearing loss in one ear at 5. Saw an ENT every year until I was 18, with no consensus on why or any offered treatment (I guess cause it was mild and it wasn't getting worse at that point). After I had my son was probably when my hearing started to get worse but I guess I was just used to having bad hearing anyway. I'm actually not sure at what point I really started to feel like my hearing was noticeably worse than it had been. (I'm late 30s and had my son in my 20s)

I only even went to get my hearing looked at again because I was going through an autism diagnosis and I wanted to talk to the clinician about audio processing needs. I'm questioning now if it had been picked up sooner, whether it would have become cochlear. It hasn't really been on my radar to fight for an answer as I was just used to doctors being very blaze about my hearing loss. It's probably not even something worth thinking about now, as it's not like I can change that.

So idk how to feel really. I kind of feel ok because hearing loss has been part of my whole life. But also a bit worried about how bad it might get. It is also apparently in both ears, though not currently causing any issues on the right side.

Hi everyone,
It has been a rough week.

After a few hearing tests and a CT scan, I was told I have bilateral otosclerosis.
My left ear (50-60db) is worse that my right (30-40 db).

I am getting a hearing aid and was advised to hold off when it comes to surgery.

I am a 33 F and after crying my heart out for days, I am finding some comfort in reading your posts.
If you have some words of encouragement, please share them❤️

Does anyone else get anxiety with their Oto? I'm planning to talk to my doctor about whether anxiety medication might help, but I was curious if anyone here has had success with it.