Will it affect my hearing a lot? I have heard that otosclerosis gets worst during pregnancy. I do not want to try to get pregnant if it will make my health and mental wellbeing worse. I have had 2 miscarriage this year. Please share your experience

I am still mentally struggling to accept my diagnosis

I developed tinnitus about 2 years ago. I went to an audiologist for an exam. He thought I was developing otosclerosis. The audiologist suggested hearing aids or a stapedectomy for a solution. He suggested I see an ENT, which I did. I was given the same advice again. The surgical option seemed like a no-brainer. I researched as much as I could online. I knew that a stapedectomy would not get rid of tinnitus completely, but since my hearing was waning, I thought it sounded like a good option. I was impressed with the medical advancement of the procedure and thought this was an easy fix. While you can find stories of people who have had some not-so-good outcomes, my research online showed that many people thought it was a success. 

I was given the name of an ENT surgeon (Georgetown Univ) that did this where I live and after an initial consultation, I decided for the stapedectomy. He seemed so confident and said he does at least one stapedectomy almost every week. I felt very confident. 

The surgery is relatively benign. I was prepped, had a general anesthesia, and woke up 2 hrs later. There is Gel-foam in the ear canal for packing (which dissolved on its own) and a cotton ball put in front of this for drainage. You cannot shower for 2 days afterwards, and even after 2 days you still have to greatly protect the ear in the shower. 

The tinnitus was very loud after the surgery. It felt that I was living next to a very loud and roaring ocean. I was quite afraid after the surgery. It eventually calmed down to the point were I hear constant water trickling through a pipe 24/7 ( a very common symptom of tinnitus, which I did not have beforehand) Initially I could hear a little bit. I put an ear bud up to the outside of my ear and I could hear. I felt that the surgery was a success. 

After 3 days I began to be very dizzy and unbalanced. I could not walk to and from work without weaving on the sidewalk. It was like I was drunk. At time the room would spin, but mostly just a lot of unbalanced feelings. I would lay down during the day and felt my head spinning. It was weird. Then the ear went completely dead. I could hear nothing. I did not give up because I knew it takes time for the hearing to come back. However, I was emotional on losing the hearing completely. 

I had my 1 week follow up and the doctor was very concerned with the hearing loss and dizziness. I had a CT scan done the next day (which showed the prothesis was in the correct position). I had another audiogram test the next day which showed massive conductive hearing loss. 

My surgeon offered an exploration and revision immediately (even changing out the prosthesis itself). He felt that was the most aggressive way to deal with these developing problems (although he also said I could wait if I wanted to). He thought there might be some inflammation, so I was given steroids (the conservative approach to begin). But I was scared and so I opted for the revision 2 weeks after the initial surgery. 

Once the ear was re-opened it was discovered that I had a reparative granuloma forming around the prosthesis. This is a VERY rare occurrence .. like 0.1% of total stapedectomy cases. This happens so few times there is very little research online about this issue. This granuloma forms in reaction to a foreign body/object in the ear. It could be the prosthesis, but can most likely be from the gel-foam or fat cells that are grafted into the ear during surgery. After the revision surgery, I am now on antibiotics and steroids to prevent any inflammation in the ear. 

The tinnitus is much lower after the second surgery, but hearing is still dead at this point. I have to wait 2-6 weeks to see if the hearing does come back at all. Its so scary to actually lose one of your ears. I try to remain optimistic and hopeful, but cannot deny feelings of regret from time to time. The only option I have now is to move forward, count my blessings with one working ear, and hope in time the hearing returned to the dead ear. From what I have read online, you can have this done more than once or twice (although the risk increases each time of hearing loss). I am not giving up.

10 day update since 2nd surgery 
I can say that the 2^(nd) surgery and the removal of the granulation tissue immediately stopped the intense unbalanced issues, dizziness, and constant nausea that accompanied the first surgery. The recovery is the same, but it feels as if the healing is going better this time around. The prothesis was also replaced. How did the inflammation get into the middle ear during the first surgery is anyone's guess. Infection from some foreign particle that got in during the first surgery? Who knows?

However, my surgeon at Georgetown Univ was disappointed that I was not hearing by now. I can use the iphone audiogram apps and hear some of the “beeping” that plays with those apps. However, you put an ear bud in the ear and I hear no music – no sound. As of this post I have no hearing in the R ear - still! Tinnitus is still there also -- no fix for that monster. Although it's back to its normal self and not that craziness that accompanied the first surgery.  

It feels as if I have been moving through the 5 stages of grief. At first, I was shocked by the loss of hearing. I then moved to sadness, crying in the audiologist office when the report first showed I had massive conductive hearing loss after the first surgery. I was angry for a time, but found I could do nothing with the anger other than allow it to exist for a time. I am in the stage of acceptance for what I have freely chosen to do to myself and the consequences that followed. 

I bought “hook, line, and sinker” the successful stores of this surgery you read online. 90% success rate – how could things go wrong? But I am living proof that things did and can go wrong. You have to be prepared that you could loose your hearing completely with this surgery. It is irreversible. There is no going back once the stapes bone is cut out. I was not prepared. It's a mind-bending experience to go through. 

But I'm not giving up hope. I have read, re-read, and read a 3^(rd) time the many comments from people who have had this surgery on redditt and you tube (this is priceless - thank you!). My only hope left is to allow the ear to heal some more and hope within 2 weeks to 2 months my ear suddenly “turns back on.” The ear does feel full and stuffed at times. I'm assuming this is the swelling in the middle ear. My surgeon said it could also include some fluid or blood that will gradually disappear over time as healing continues. Maybe as this does, and the ear continues to heals, the prosthetic will work and my hearing will turn back on. I have nothing left to hope for, so I cling to this thinking for now. 

My surgeon said to come back in 2 months for a follow up. Not sure if I will. Not sure if it will lead to anything new. My surgeon has done hundreds of stapedectomies. I was a very rare case. But I was left without hope for a fix for this “rare case” – other than patience and waiting. Is this the end of the road? Why operate on someone, get an unexpected outcome, and just say “sorry, it sometimes happens, but very rarely.” I continue to research specialists in revision stapedectomies. I want to have a back up plan for when things do not improve in 2 months. I will not let the regret of going through with the surgery destroy me, but it has certainly made me think twice about any future surgery for other aliments. It's my first brush with my mortality at 55 yr old. Causes you to think a lot about one's future. 

I have the former, despite never having surfed or done any of the activities said to exacerbate it. My (full) sibling has Otosclerosis, but only in one ear, which seems to be relatively unusual. Both of us have been told we have unusually narrow ear canals as well.

I don't know if my sibling has any Extosis, but they are both forms of excessive bone growth within the ear, and we both have atypical presentations. We don't know any other family who have been diagnosed, although a number have ended up needing hearing aids in mid-life rather than just when very old, so it's not impossible it's inherited from a parent.

My sibling was wrongly told the condition was not hereditary so none of the family have been screened and it's fortunate that we read up on this ourselves. I'm wondering, however, if there has been shown to be any link between these two conditions? I'll have to get tested at some point but I am unclear if this indicates I am higher risk than if I had normal-looking outer ears.

Hi everyone, I've just been diagnosed with otosclerosis and I'm devastated. It started suddenly a year ago after an ear infection and sinus infection and I have all the classic ETD symptoms; muffled hearing, popping, fullness, pulsatile tinnitus. I also have neck and shoulders pain so I was convinced it was muscle or tmj related. This is why I'm so shocked that it's otosclerosis. It also doesn't run in my family at all, there's zero history of hearing loss.

I have mild conductive hearing loss, and the doctors seem to want to take a 'do nothing' approach for now. My first question is, does it always progress? I've seen people can be asymptomatic or it remains mild.

Secondly, I'm aware many don't agree with 'alternative treatment' but I've seen many initial studies for bisophonates, fluoride and even limited research around vitamin d, of which I'm deficient in (I live in the UK so, shocker!)

I've also learned that it's considered an automimmune inflammatory disorder and I've spoken to a guy who halted the progression of his with a plant based diet. Obviously this is anecdotal. And another woman whose hearing actually improved on several audiology results after following an autoimmune diet for another illness. Again, nothing's proven of course and I'm not claiming it is!

I've also been looking in to medical medium and I know he is considered woo woo, but I wondered if anyone had tried his antiviral or automimmune protocol in regards to otosclerosis?

I know people react quite strongly to suggestions other than surgery or hearing aids but I figured it couldn't hurt to try and wondered if anyone else had too?

I am 4 days post op and thought I'd share my Otosclerosis and Stapedectomy journey for anyone looking for some reassurance + anyone wanting to give me some during this recovery process!

I currently have unilateral otosclerosis in my left ear, and was completely unaware of any hearing loss until I developed a really bad flu after a stressful life event. Figuring the crackling and lack of hearing was due to a bad cold, I put off seeing anyone until about a month after the cold went away (but the hearing loss remained). At this point I figured I had a build up of wax so went to an ear specialist for 'cleaning' only to be told it was likely just eustachian tube dysfunction and to take some antihistamines.

Fast forward a year and a half later of hearing tests and ENT appointments to find a subspecialist who could confirm my diagnosis (as well as a CT referal). I indeed had severe conductive hearing loss making me a good candidate for surgery, rather than hearing aids, especially given my young age (30F).

This brings me to my Stapedectomy 4 days ago. I was of course very nervous having managed to compensate with my right hearing for the last 2 years, and especially hesitatant as I plan on children very soon and it seems there is some uncertainty around bone regrowth after pregnancy. Anyone's experiences with this would be greatly appreciated.

I'm currently 4 days post op and so far the recovery has been OK. Day 1 and 2 of surgery I felt completely fine, other than some slight dizziness and discomfort in my operated ear.

However day 3 and 4 have hit me hard. I wake up from any kind of nap feeling groggy, dry, and lethargic. I'm having nausea in the morning before food, with a clammy mouth which I have to attribute to the antibiotics. I have also lost the taste in half my mouth which I hope will return within the next few months.

I'm walking fine, there is only slight discomfort in my ear, when I'm lying down I feel the odd ping or jolt, but nothing that concerns me. There is blood and crackling, especially after I apply my ear drops. Overall I would say all of this is normal.

I am basically patiently awaiting my 2 week follow up appointment for this packing to be removed and to be finished with my course of ABs, as I feel these two things are causing me a great deal of anxiety.

An given my anxious personality type I feel it warrants sharing my experience and seeking comfort in others detailed experiences, as I feel reading most stories of recovery focus more on when the packing is out and their hearing has returned, rather than the day to day directly after surgery.

Most of all I fear this recovery is probably just a mental game of patience, as I can hear some sound coming through the packing so I'm less concerned about success and more regarding whether any of my other symptoms are a sign the prosthetic has moved or scar tissue is forming.

Lastly I just want to add that anyone who is going through this is a legend, cos losing your hearing, especially young and suddenly through no fault of your own sucks.

Thank you for the silent support you’ve given me through this thread 🙏 and of course feel free to AMA.

So I just got officially diagnosed today. The doctor gave me the typical 3 options: surgery, aids, or do nothing. We’re past do nothing at this point, but surgery really freaks me out. I’m not scared of procedures, I have an immunodeficiency and have had sinus/septum surgery and had a port at one point, but something about the quickness to digest without as much as a CT I’m not feeling confident that surgery is the first step.

I have no feelings or self consciousness about wearing hearing aids, like I said I had a port which was very visible and people still hardly noticed. While the thought of getting my hearing back is enticing, I feel like it would be worth trying a more conservative option first? My 28th birthday was last week so I’m definitely young to have nearly 50% loss , but something in my gut is telling me to try aids first. I’ve also read a lot of horror stories here and I know people are probably more likely to share their experience if it was negative, I’m not convinced a stapedectomy is the right choice. I’m thinking about pregnancy in the future too and I would hate to have to get it just to have issues later. Thoughts?

I'm now 7 months post op. And I'm a bit worried since my high frequencies didn't improve. Yes I do hear better today, but I still have situations where I have to ask people to repeat themselves.

What is the reason why high frequencies stay the same for some people? Is the problem in the middle-ear or in the inner-ear? Could it be related to other things than otos? Like noise-induced hearing loss? What do you think?

Hi all, I had surgery on my right ear yesterday. My tinnitus is still loud, has anyone experienced that it decreases over time after surgery ?

I’m not sure why I’m posting this.. maybe being 30 years old with hearing aid and otosclerosis can be a bit lonely, given that none of my friends/family can relate to it.

Feeling a bit dizzy, but overall I’m good. Looking very much forward to getting the gaze removed from my ear (in one week).

I feel like my hearing is the same as before, but now I have my ear filled with stuff, so that must mean my hearing is better…

Thanks for reading ♥️

Tinnitus getting so random from low hz to hight time to time + with many street noise feels like it getting louder. I honestly try handle this but im start thinking do something to just not hear at all... Feels like endless nightmare...

4 weeks ago I had my revision Stapedectomy, it's better but still a big gap to my bone conduction hearing. I'm writing because I wonder if others have experienced something I did.

Like a week after the surgery, I don't know what I did, probably moved my jaw or cleared my ears, and I heard a KLUNG sound and like a switch my hearing improved by a lot ( still with stuffing in my ears but it was very noticible ). That awesome hearing would be there for a few minutes I think but after that it went back to where it was now. It reminded me of post OP of my first surgery where I also had that. I wonder if any of you have had the same.

Title is pretty self explanatory. I was diagnosed with otosclerosis a little less than a year and a half ago, and originally was facing 50-60 db loss in my left ear and 30-40 in my right. My otologist told me I’m a great candidate for surgery, but he said if I wanted to take time and try hearing aids then that’s great too. I’ve been wearing them for a little over a year now, and while I appreciate the help they give me, I honestly hate wearing them. I hate having to constantly clean them and adjust their volume, and they make my ear canals itch constantly. I have dry and narrow ear canals naturally, and having something inside them all day is a huge nuisance. And I hate that I can’t hear anything when I wake up in the morning until I put them in.

At my one year follow up, I spoke with my doctor more in depth about the surgery, and he told me that my right ear had degraded further to 50-60 db loss as well. I am only 26, and the thought of having to wear hearing aids (and still struggling to hear even with them sometimes) for decades to come is extremely disheartening. I decided that if I can get at least some of those years back with my own natural hearing, then I might as well try. I’m telling myself that this is to improve my quality of life, but I’m also absolutely terrified. I’ve never had surgery of any kind before, so on top of the fear of waking up with a dead ear or some other awful side effects I’m also experiencing being operated on for the first time.

Long story short, all this is to say I’d really love to hear some other people’s experiences with this procedure and with recovery. I just started a new job and I’m afraid that this will set me back for weeks, or that the side effects will be permanent. I know that I can’t keep going on like this but I could really use some encouragement and honest advice right now. I feel like I’ve done everything I can in heavily researching my surgeon and the procedure, and in my pre op phone call I was able to ask all the questions I had about the procedure and felt like my doctor answered everything well. Now it’s just the feeling of pure anxiety while I wait. Thanks in advance everyone.

Recently was confirmed my hearing loss and tinnitus is the result of otosclerosis. I’ve been advised by my doctor to wait for surgery until it progresses more. I’ve been considering hearing aids in the mean time.

However my question is this. Has anyone else’s doctor prescribed them Florical Fluoride Supplements for Otosclerosis? My ENT told me he’d recommend me taking them for 1 year to help strengthen my ear bones. Has anyone heard of this before? I can’t seem to find other references to this being a treatment option.

10 weeks later and improvement is minimal. Dr said he wants to wait 6 months then another hearing test and CT scan. He said most of the improvement would have happened by now. When I asked why it feels constantly blocked and itchy he said 'I can't tell you why that would be'. I asked about revision surgery and he said 'there is a lot to consider'. I know it has a lower success rate and higher risk. Maybe the prosthetic has moved. For now I'm just supposed to wait the 6 months. Feel robbed, my older sister and older brother had both ears done, all 4 ears worked and they are more than happy with their outcomes. Mine is just left ear and I land in the 7% of people with no improvement. Feel so down about it all. Here is my hearing test which shows what I already knew. Main difference to before surgery is I now have this weird full/blocked feeling when I turn my head certain ways.

Hello everyone! I'm a dancer, and I spend 4-5 hours a day in the studio. Currently, I have hearing loss and can't hear up to 80 dB. I'm planning to undergo a stapedectomy in Halifax, Canada, with Dr. Morris. Please share any experiences related to physical activity after the surgery, as I would prefer not to leave my profession. I'm also interested in hearing about any long-term experiences with the surgery. How long does the effect last?

I had a stapedectomy late July in my left ear. My hearing is coming back, but I’ve been experiencing tingling that comes and goes all day everyday in my left chin area along my jaw. My surgeon said that was not common at all after surgery and was very perplexed. She mentioned it might have been from the mouth tube during surgery? I really hope this goes away and is not permanent. Have you experienced this or know of this numbing side effect?

Got my surgery done on Aug 22 and majority of my packing was removed yesterday. As per doctor, there’s still some packing deep inside which will dissolve in 3-4 weeks. I didn’t had any pain, nausea or dizziness after the surgery which was great. However, my hearing hasn’t improved. I have tinnitus and pulsatile tinnitus while sleeping at night. It was happening before the surgery so things haven’t improved. I have a hearing test 4 weeks from now. I’m very concerned about the impact of the surgery. Whats the typical timeframe to get any improvements in hearing and tinnitus post surgery?

Hello. Has anyone in this group had a successful revision stapedectomy and more importantly; have a doctor they would recommend? I am looking for one in NY, CT, PA, NJ or Massachusetts. Thank you.

I just got diagnosed with ostosclerosis and I have been offered a stapedectomy in my left ear. Has anyone had this surgery while being awake on a local anesthetic? I would much rather be awake than be put under if possible, any stories or advice would be helpful, thank you

My 1st surgery (June 2023) failed horribly with my left ear at -80db. The surgeon said “he might have placed the implant a little too far anterior” and deemed the surgery as failure. I woke up with severe tinnitus and balance issues. Turns out he had a leak too. After full one year of recovery the nerve is still healthy and the issue remains the connection. Obviously I don’t trust Dr. Benjamin Crane anymore. Any recommendations for revision surgery/surgeon- in the US?

I had a stapedectomy in April in my right ear. For the most part I have been thrilled with the results, my hearing has improved dramatically. I barely use a hearing aid in my other ear any more.

However, I have noticed my ear cracks, clicks and pops more then it ever did before. I've recently got a cold for the first time since surgery and it is so so much worse. My ear is cracking constantly, it's even waking me up because it's so loud.

This has got me quite concerned and I'm now wondering if it's a sign something has gone wrong. Has anyone else experienced this?

TL;DR - Suffering mild/moderate unilateral hearing loss and tinnitus, should I pursue surgery, hearing aids, or both?

Hi all, I (30,m) met with an ENT consultant in the UK today and after assessment it was suggested I am most likely suffering the effects of otosclerosis.

For over a year now I have experienced tinnitus (roaring sound with a high pitched tone) and mild/moderate unilateral conductive hearing loss in my right ear. Both the hearing loss and the tinnitus are impacting my life. I work from home as a researcher and the need to concentrate on writing papers is undermined by constant tinnitus - a fresh pair of Sony over ear noise cancelling headphones have been a lifesaver for me this year, allowing me to play music quietly and distract myself from the tinnitus. The ambient noise mode on them actually enables me to hear more than usual, and so is good if I need to keep an ear out for a delivery van knocking on the door.

It has been suggested I get a CT scan to confirm the diagnosis, but surgery was one option suggested. I am weighing up the costs of going with surgery, pursuing hearing aids, or both, as some posts here suggest that hearing aids have really helped them with tinnitus. Surgery sounds a more permanent fix, if successful.

I would appreciate any advice on the above and it's comforting to know I'm not alone with this issue. Particularly if you are UK based like me, and may have relied on our wonderful but burdened NHS to get help.

Has anyone dived as in scuba diving after getting a stapedectomy?

I was just wondering if anyone has had any experience with that.

I'm not even close to getting my surgery but it will be a no no for me if it will affect my ability to go scuba diving.

So I went up to the hospital to see the lovely ENT people to have my packing removed since it’s been 3 weeks since I had my surgery. Arrived to a fire evacuation happening so that made me a couple of minutes late which would ordinarily trigger my anxiety but ended up having to wait almost an hour to be seen. This wasn’t a huge drama because I had a book to read since the Olympic coverage didn’t interest me.

The lovely doctor looked in my ears, told me that the incision site appears to be healing well and then he told me that he was going to suck some more wadding out of my ear. The sucking was so freaking loud! A few minutes later and it was done and the doctor was off chasing a tuning fork to test my left ear.

Once he handed me my slip to let the nurses know about the next appointment in 6 weeks time I left the hospital and my goodness the world sounds so much louder now! I’m almost too scared to put on my over the ear headphones and listen to music because I don’t do my music soft and I don’t want to risk becoming overwhelmed and having a meltdown since I am neurodivergent.

I will admit that the vertigo was horrid for the first week after surgery and the tinnitus has been a royal pain in the arse at times but I am still not regretting getting the surgery.

I had a stapedectomy 2 weeks ago in my left ear and completely forgot to cover my ear in the shower today. Will the water affect my recovery in any way? I go in this Thursday for my packing to be removed.

I have a Stepedotomy surgery scheduled in 2 days and have taken a week off from work for recovery.

Has anyone used those bone conduction earphones after surgery during the recovery?

I am planning on killing time by watching Olympics so will appreciate any advice.

I had a stapedectomy three days ago and was doing well with dizziness and balance, but today I feel so much worse. Kind of nauseous, very unbalanced, can’t move as fast as I could right after surgery. Is this normal ?

I had a stapedectomy yesterday and have been experiencing close up blurry vision. Has this happened to you? Is this in connection to the surgery or anesthesia?

Hi everyone, I just wanted to ask if anyone is suffering from pulsatile tinnitus. I got diagnosed with Otosclerosis in my 30s I am now 43 but this pulsatile tinnitus started in January this year and it's driving me crazy, hearing my pulse 24/7. Just wondering if it is linked to Otosclerosis. I am seeing ENT again but with long waiting times it isn't until February 2025.

Hi! Reddit posts have been so helpful that I decided to share my experience for other people coping with otosclerosis.

I'm a 33M from Portugal. I was diagnosed with moderate bilateral conductive hearing loss at 29y. Most likely I had it mild to moderate during the 20s.

Went for a stapes surgery (free here) at 31y with a random doctor and without doing any research. She thought the case was really serious considering my age, I got scared. And... it went wrong because I have a prolapsed facial nerve (incredibly loose, very rare. fell during the surgery hiding the stapes bone that had just been removed and the doctor stopped it there). This couls have been diagnosed with a good CT scan though! At that time I lost all my middle ear hearing on the right ear (I was left without a stapes bone). It was really difficult because only then I understood the potential consequences of all of it, I even blacked out during the follow-up appointment 😅 I was struggling a lot to socialize and scheduled an appointment for hearing aids.

In the meantime, as I was feeling down, I contacted a local association (Ouvir) which was extremely helpful as it led me to a great doctor (Prof. Pedro Escada) who was confident to go for a second surgery placing the prothesis in an alternative part of the bone (promontory). It went well enough (average of 28db post-op) and I'm considering doing the same in the left ear. I can get by without hearing aids for now, it didn't get worse during these two years. The recovery in both surgeries was fine, no dizziness or anything similar. Even in the second surgery I couldn't hear a thing for a week until they removed all the cotton inside and asked me to gently blow my nose. suddenly I could hear! the sounds were kind of distant at first but then they got clearer.

After the first surgery I also got tinnitus. Sometimes I think I had it before but didn't notice it. It was unbearable for a couple of months but suddenly I found a website where they recommended meditating and, when relaxed, focusing on the tinnitus. This helps associating the tinnitus with relaxation, instead of anxiety. I had to insist a lot on it but eventually it worked incredibly for me and it really hasn't been an issue since then, just notice it once in a while without anxiety.

I try to have a balanced life (exercise, good food, some meditation), to be healthy and possibly slow down the disease. Once in a while I get a bit anxious with all of it (degenerative diseases are always a bit scary I guess). But honestly my life is much better than before the surgery and I try to leave any future problems for the future me, enjoying the hearing and life I have now.

Recommendations: -I would definitely try quality hearing aids first if they weren't so expensive here, although I never tried them before. But I don't have any stigma with it. it's like using glasses, in my opinion.

-If you go for a surgery choose a GREAT doctor with lots of experience

-If you have a dehiscent or prolapsed facial nerve you can still get surgery with the right doctor. cochlear implants, if needed, might be an issue. but still possible from what the doctor told me

-if you have tiny ear canals, as I also do, you can still get surgery

-use ear plugs in concerts as sometimes this surgery removes the stapedius reflex which protects the inner ear from loud noises

-meditate for tinnitus, it helped me tremendously!

-join a local association / community with people experiencing similar problems. there are so many inspiring people going through similiar issues, just connect!