Had my 2nd stapedotomy done today on left side. Right side was operated 10 years ago with still good results. I had progressive conductive hearing loss which was especially in the low 0-1.25khz frequencies. Pre operative airbone gap around 25db.

I had a special case and had this done by an experienced surgeon. My facial nerve was half way prolapsed on the stapes footplate which required extra care and experience by the oncologist.

The operation is now 2-3 hours behind me. According to doctor prosthesis was placed with ease, had a 0,4mmx4,5mm Kurz piston installed. The operation was done undel general anesthetic which was way more pleasant than previous local anesthetic. Currently experiencing minor vertigo when moving head. Cant hear anything much on the operated side due to stuffings and bandage. but if I touch the bandages around my ear I CAN hear the touching loud and clear. At the moment I am not experiencing any pain. No facial nerve issues. Very minor taste difference on the operated side, but nothing like last time when taste was mostly metallic for weeks.

I will be updating this as the healing moves on, thanks for reading! Also AMA if you want to know anything regarding my otosclerosis or procedures :)

I (26F) first noticed over a year ago than my hearing was worse in my right ear than in my left ear, but it was only noticeable when listening to music, and didn't hinder my daily life, so I didn't pay much attention to this. In January this year I had a health test for a new job that confirmed that I had a mild hearing loss in my right ear and normal hearing in my left ear. I visited a ENT, but he assured me that the hearing loss was not very significant yet. In June I had another health test for another job and the audiometry results were similar to January's. In September, I started noticing tinnitus (I already had pulsatile tinnitus sometimes, but I assumed that it was something that everyone had), and I noticed that my hearing in my right ear had worsened a bit. But at the beginning of November, everything worsened suddenly. I started having all these weird sensations in my left ear: the vibration of the engine when I was riding a bus, a great change of pressure when riding the metro, a sense of fullness, feeling like the quality of hearing fluctuated and hyperacusis. My worse ear wasn't as annoying, but I started feeling a greater sense of fullness that was almost painful. I had a CT scan three weeks ago that confirmed that it was otosclerosis, which made sense because my dad has it. The ENT sent me to another specialised clinic, and yesterday I had an appointment with them because I feel that my disease is getting worse and worse in a matter of weeks. The visit was reassuring in a way, because after the tests they made and after having a look at the CT scan they confirmed that my hearing loss is purely conductive and that my inner ear is healthy. My bone conduction results are very good in both ears, especially the left one, but they have worsened since the audiometry in June: I have now moderate hearing loss in my right ear, mild hearing loss in the low frequencies of my left ear and normal hearing at the mid and high frequencies of my left ear. The doctor asked me if I wanted to get the surgery, to which I reply yes, seeing that my bone conduction is so good and that my dad had a succesful stapedectomy over 30 years ago that it's still going strong, it was a no brainer. She then asked me if I would want to have it in January or February, which surprised me, but I guess that it's best to do it as soon as possible, so I said that it was fine in February. After the appoinment, I felt relived and optimistic, because at least it's something that can be fixed (I was really afraid of sensorineural loss), but at night, I was really struggling to sleep and I had nightmares. I woke up so anxious thinking about all of this. I've been feeling very anxious these last weeks, and on Sunday I almost had an anxiety attack and I broke up crying. Today I had to leave work early because I started crying and feeling really anxious. October was an amazing month, and I was in a good point of my life after a stressful period earlier this year, with so many plans ahead and an active social life, and promising job opportunities, but all of that feels like it doesn't matter now. I'm not only worried about the surgery, but about the progression of the disease. I know that just because it has suddenly worsened it doesn't necessarily mean that it will continue to worsen quickly, but it feels like that. It's especially maddening that I sometimes feel this cracking sound in my left ear, and when I'm in the bus, I swear I can feel how the ossicles try to vibrate. I keep having this fluctuation on the quality of my hearing, and it's now even more sensitive to loud sounds, so that's another reason why I'm starting to get afraid of leaving my home. I had a trip planned for NYE abroad, but with all of this and considering I haven't payed it yet, I don't know whether I should go and have fun before the surgery or rest and treat my anxiety at home.

I have to talk to the doctor as well about more details about the surgery, the method they use and the rate of complications they have. She seems very optimistic and confident, but one thing that worries me is that she is very young, so she can't have that much experience.

I’ve had otosclerosis in both ears since I was about 14. Had right ear surgery ten years ago and left ear two years ago. Both worked great until I had a miscarriage about a year ago and the left ear (newest surgery) slowly stopped working. Fast forward to now, I broke my ankle 2.5 weeks ago and have been on Diclofenac- heavy anti-inflammatory pills. Suddenly yesterday my left ear started coming in and out of hearing! It was the craziest thing! I read a little about how otosclerosis could be an autoimmune disorder but I’ve been tested for markers recently and tested negative. Anyone else experienced anything like this?

I was diagnosed when I was 6ish years old and got hearing aids in 5th grade but because it started when I was so young they can't do surgery and I just wanted to know what the average age of diagnosis is and how it changes treatment

After two weeks I noticed that I still couldn't hear sounds, only vibrations. I was scared and sent a message to my doctor who asked me to go to the office urgently. He did an audiometry test on my Bone conduction and moderate neurosensory loss of 70% was confirmed. I was quickly put on intravenous corticosteroid treatment to try to reduce some of the inflammation and restore some of the loss. Has anyone experienced this? Is it reversible? I'm terrified.

Hey gang,

For context I’ll let you know I was diagnosed with otosclerosis when I was young, at around 5 years old. Got hearing aids and got along as best I could.

When I graduated college, I decided (for a mixture of reasons) it was time to try out a stapendotomy and see if I could improve my hearing on the left side first.

Well the implant failed to improve my hearing. My ENT at the time said it was due to so much scar tissue from frequent ear infections. It actually also required a second surgery to close the hole they made in my ear drum.

Fast forward 13 years to now, and I’m in a pickle. In September I thought I had an ear wax build up and that was causing some hearing loss. Audiologist said it looked like an ear infection (even though it didn’t hurt at the time). Saw some docs and did 2 rounds of antibiotics before being referred to ENT PA. By this time it is intermittently painful. ENT removes some ear wax, gives me drops and eventually orders a head CT.

Head CT shows, “The prosthesis projects medially into the vestibule.” The PA calls me and says the prosthesis is displaced and that may be causing my pain.

Questions: Anything similar happen to anyone else? Seems like usually the biggest symptom of displacement is hearing loss not pain.

From what I’m gathering, it seems like prosthesis projecting into the vestibule is less common. Is that the case? Could that be causing pain?

Thanks so much!

Read my full story by clicking on my name and finding my original post.

Still 100% hearing loss; so at the 7 week mark, I visited with Dr. William Luxford at the world famous House Ear Clinic in Los Angeles. HIGHLY recommend Dr. Luxford (Clearly the place I should have been at from the beginning since all they do is operations on the ear.) For those of you reading this and thinking about a stepdectomy, let me impart the knowledge of Dr. Luxford. The House Ear Clinic was one of the pioneers of the stepedectomy in the US (as well as the choclear implant). In fact, in the early days, they had such a long waiting list for stepdectomies, they eventually started training other doctors to take this procedure around the country . Indeed many people all over the USA have trained at the House Ear Clinic. (a very good sign if you can find this in a doctor's Bio). 

There are 2 ways of doing the stepedectomy in the US - either with a piston prosthesis or a bucket handle prothesis. Dr. Luxford seemed to imply the ENT surgeons on the West coast tend to favor (or were trained on) the piston prothesis and the ENT surgeons on the East coast favor the bucket handle prothesis. The bucket handle prothesis was developed after so many incus breakages in trying to attach the piston prothesis. But Dr. Luxford did not say that one was better than another – just 2 different ways of doing the stapedectomy. (Although I'm sure you can find some academic ENT professors that have their opinion on which way is best). The bucket handle is not generally measured for length as the piston prothesis is, when implanted. The bucket handle prothesis is a “one and done” device. It does not rest on the oval foot plate but is pushed through it, to some extent, to make it work. 

In my particular case, I had the bucket handle prothesis implanted. Dr. Luxford surmised that the extreme unbalanced issues I faced after the first surgery is most likely due to the prothesis being pushed too far into/through the oval window. The second operative report does not mention if the prothesis was trimmed or moved in any way, but I suspect it was pulled back a bit as these symptoms disappeared instantly after the 2^(nd) surgery. Dr. Luxford as not phased by the granuloma formed in my inner ear. As he put it, you open the inner ear and lots of things from the outside can get in. Surgeons do their best to keep “foreign objects” out of the surgery area, but it's not always 100% guaranteed, esp in such a small area for surgery. My pathology note does not indicate what was the foreign object, just that it was there causing this inflammation. 

In there hope for a return of my hearing? Probably not. I've passed the mile markers of 1-2 days, 3-4 weeks, and am approaching the 2 month milestone with no hearing. He said the next marker is 4 months. If the hearing has not returned by then, it most likely will never return. In fact he was suggesting to have a surgery at the 1 yr mark and just removed the device altogether and be done with it. I drew the short end of the stick and ended up in the 1% category of who loose hearing completely with this procedure. So know that it is a real possibility. Dr. Luxford said there is no known reason why this 1% category exists. I can have my opinion, feelings, prejudices, (which I have about my Dr and Georgetown) but there is not one reason for the causes of 100% hearing loss with either prothesis. It just happens and that is life. 

Dr. Luxford is only 1 opinion, and he suggested I seek out more, but from ENT surgeons who work with the bucket handle prothesis. (The House ear Clinic uses the piston prothesis.) People on reddit want names, so I have a few: Dr. Bradley Kesser at UVA, Dr. Paul Lambert and Dr. Teddy McRaken at MUSC, Dr. Thomas Roland at NYU, and Dr. Douglas Backous in Pyuyallup WA. I have not researched what prothesis these Dr use as of this posting. He said it would be important to find s a ENT surgeon that not only uses the bucket handle prothesis, but actually measures it. Its like finding a specialist of a specialist of a specialist! Knowledge is power. I wish my own Dr has explained this surgery better than he did – which was almost nothing at all.

As they used to say in ALAON meeting I attended 35 yrs ago, take what you want here in my posting, that can be helpful, and leave the rest. "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I'm left with philosophizing about “Why me?” “What is the reason for all of this?” Questions I gave up asking years ago. At 55 yrs of age I am reminded that while I trust in science and medicine, it's still not 100% perfect. I am mortal and this body I have will eventually give out. I've never had a testicle or breast removed for cancer, have never had a limb taken off in war, and have never had a debilitating disease like Parkinson's, Alzheimer's, or Multiple Sclerosis. I am other wise healthy, have some money in the bank account at the end of the day, and have someone who loves me at night – and I still have one functioning ear! I am blessed, despite the sudden loss of hearing caused by my own decision. I am human and I will survive and go on. Important to keep it in perspective the best you can.

I had a stapedectomy 12 days ago and I don't feel like my hearing has improved. I'm still trying to get more confident, but I feel frustrated. If I have to have a review, I'd like it to be with a Good professional. Could someone from France recommend me? Especially from Paris or nearby cities.

I'm 26F, and I've just been diagnosed with otosclerosis, although I already imagined that I had it because my dad has it and I showed the typical symptoms. I first noticed around a year and a half ago that my hearing was worse in my right ear than in my left ear, although I mainly noticed this only when I was listening to music. This was confirmed in January this year when I had an audiometry as part of a health test for a new job, that showed that had a mild hearing loss in my left ear and normal hearing in my left ear. In June, I had another audiometry for another job health test and it showed very similar results. I didn't noticed any changes until September, when I started having tinnitus in my left ear (the good one). After a week of hearing a faint ringing, it kinda faded on its own. However, I started noticing in October that my hearing was a bit worse, especially after I had a cold. But the worst part came just two weeks ago, when I suddenly I noticed a drop on the quality of my hearing in my left ear, plus a bunch of annoying sensations: a feeling of fullness, feeling like if I had water trapped in my ear, and a vibration/purring sound that I feel while in the bus or in a car while the engine is making more noise. I also feel like if I had wind trapped in my ear, and that sometimes some noises feel suddenly too loud despite not being actually loud, as well as a "robotic" feeling of people's voices when this happens (this last thing happened to me a lot two weekends ago, but at least it seems like it's over for now). I also have this constant feeling of needing my ear to pop, and the quality of my hearing fluctuates during the day: sometimes I hear very clearly, sometimes it feels muffled. Since last Friday, I started hearing again this high frequency faint ringing only in my left ear, but thankfully, although it hasn't stopped, now it's much fainter, and today and yesterday I didn't hear it at all after just waking up, I think that the noises that I hear during the day, especially after having been listening to music, trigger it.

Although I still have the tinnitus and the muffled ear feeling, I feel like most of this symptoms are better this week than last week, but one new thing I noticed is feeling a bit dizzy sometimes. I first felt it last Sunday night, but I asssumed that I was just really sleepy, but during this week I've felt it again a few times. I don't really know how to explain it, but it's like if the floor was further away than it should when standing up, and like if I was not completely "there" if it makes sense. Also, today at some point I felt like it I was about to lose balance, but I didn't, and when laying down with my eyes closed, I sometimes feel like if I was lacking some spacial awareness of my body. I've only had these sensations while feeling very sleepy or tired, not during most of the day, but it still scares me a lot. I know that when otosclerosis progresses to the inner ear, it can cause dizziness and vertigo, and I'm terrified of that. I had a CT scan less than two weeks ago and it showed that my inner ear is completely healthy, as well as the ossicles themselves, the only pathology was at the point of of the fissula ante fenestram. I've been feeling really anxious these last two weeks due to all of this, and also really tired due to having to wake up really early, work and other stuff, so maybe the dizziness it's mostly because of anxiety, because if the CT scan was less than two weeks ago and the inner ear was healthy then it sure cannot have progress that fast, right?

What worries me the most is that all of this happened suddenly and in my better ear. My right ear (the bad one) feels the same as it felt months ago. My audiometry results are not too bad, my worst results are at 125 and 250 hz in my right ear, where I'm at 45 db, but at all other frequencies I'm at 30 db or lower, and the only thing I struggle with in my daily life is understanding people whispering, where I usually have to come closer or ask them to repeat themselves. More than the hearing loss itself, what worries me is these sensations in my left ear that are driving me mad, and especially the possibility of the disease progressing faster than it should, to the point where a surgery wouldn't be useful anymore. The ENT told me to come back in 4/5 months for another audiometry, but I don't know if I should come back now and tell him about the light dizziness.

I'm now 4 weeks plus after my stapedectomy. Could anyone advise, when is ok to start road running once again?

10 Days update: No hearing signal so far in the operated ear. I felt a vibration when I moved the dressing but this morning I felt nothing. I am very scared, but I have seen reports that People who started listening after 15 days. But it's horrible, like I'm counting down to find out if it failed. 3 days ago I went to the ENT appointment and he did the Weber and Rinne tuning fork test with me. When he tested sensorineural hearing I could hear with both ears, but when he tested bone life I could only hear with the non-operated one. He tried to reassure me by saying that it was the Internal packings that was blocking the air. But I was quite scared.

4 Days: I had otosclerosis surgery two days ago and I am experiencing the same symptoms reported here. Right after the surgery I felt very dizzy and vomited twice. On the second day it got much better. Now still a little dizzy and hearing popping in the ear, sore throat due to intubation.

My voice is super loud and I am sensitive to sounds, such as discharge. It feels like the ear that was not operated that Is hearing better, obviously doesn't make sense. I believe it is communication between the ears and the brain trying to assimilate the new signals.

In the operated ear I do not feel any improvement in In the hearing, but I understand that it must be the bandages. I am hopeful that I will see improvements next week, after removing It.

My husband has experienced gradual hearing loss in his left ear, with ringing that started during the pandemic. Initially, the ringing occurred about once every six months, but now it has increased to once every two weeks, and he has lost around 70% of his hearing in that ear. During the pandemic, an ENT noted that his eardrums were slightly retracted, which might have been a factor, and there was also some bone growth. Recently, the doctor confirmed that the bone growth persists. After an audiology test, we learned that sound isn’t reaching his inner ear. However, with a bone conductor test, it was confirmed that his inner ear is healthy. Naturally, I researched online, and the first thing that came up was the possibility of a tumor, which has me concerned. He doesn't have any symptoms like dizziness etc. I'm scared and concerned.

I had my stapedectomy due to otosclerosis in my left ear 3 days ago. However when they laser out the stapes, the plate it connects to came out with it. So my surgeon truly had no idea if I was going to hear out of it at all afterwards since my entire inner ear was exposed.

She tested it with tuning forks and I was able to hear them. If I listen very closely with my left ear, I can still hear a bit even with the packing and the cotton ball too. But I am suffering with severe anxiety with the unknown. And I feel like I’m just bitting at the nail to get the packing out to see if it’s going to be any better, worse or the same. But then I also know it still takes weeks or months to fully heal and truly know what the outcome is.. Recovery sucks and I’m only three days in.

Just looking to see if anyone had an experience like me and still had a somewhat successful outcome?

I was diagnosed with otosclerosis a couple years ago and haven’t been flying internationally since. I flew for the first time yesterday and had so much pain in the affected ear on both flights while the plane was landing.

Has anyone else had extreme pain in their ear when landing? I can’t see anything about it online.

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. 

UPDATE at 7 weeks:

At the 7 week mark, I visited with Dr. William Luxford at the world famous House Ear Clinic in Los Angeles. (Clearly the place I should have been at from the beginning since all they do is operations on the ear.) For those of you reading this and thinking about a stepdectomy, let me impart the knowledge of Dr. Luxford. The House Ear Clinic was one of the pioneers of the stepedectomy in the US (as well as the choclear implant). In fact in the early days they had such a long waiting list for stepdectomies, they eventually started training other doctors to take this procedure around the country . Indeed many people all over the USA have trained at the House Ear Clinic. (a very good sign if you can find this in a doctor's Bio). 

There are 2 ways of doing the stepedectomy in the US - either with a piston prosthesis or a bucket handle prothesis. Dr. Luxford seemed to imply the ENT surgeons on the West coast tend to favor (or were trained on) the piston prothesis and the ENT surgeons on the East coast favor the bucket handle prothesis. The bucket handle prothesis was developed after so many incus breakages in trying to attach the piston prothesis. But Dr. Luxford did not say that one was better than another – just 2 different ways of doing the stereotype. (Although I'm sure you can find some academic ENT professors that have their opinion on which way is best). The bucket handle is not generally measured for length as the piston prothesis is, when implanted. The bucket handle prothesis is a “one and done” device. It does not rest on the oval foot plate but is pushed through it, to some extent, to make it work. 

In my particular case, I had the bucket handle prothesis implanted. Dr. Luxford surmised that the extreme unbalanced issues I faced after the first surgery is most likely due to the prothesis being pushed too far into the oval window. The second operative report does not mention if the prothesis was trimmed or moved in any way, but I suspect it was pulled back a bit as these symptoms disappeared instantly after the 2^(nd) surgery. Dr. Luxford as not phased by the granuloma being formed in my inner ear. As he put it, you open the inner ear and lots of things from the outside can get in. Surgeons do their best to keep “foreign objects” out of the surgery area, but its not always guaranteed, esp in such a small area for surgery. My pathology note does not indicate what was the foreign object, just that it was there causing this inflammation. 

In there hope for a return of my hearing? Probably not. I've passed the mile markers of 1-2 days, 3-4 weeks, and am approaching the 2 month milestone with no hearing. He said the next marker is 4 months. If the hearing has not returned by then, it most likely will never return. In fact he was suggesting to have a surgery at the 1 yr mark and just removed the device altogether and be done with it. I drew the short stick and ended up in the 1% category of who loose hearing completely with this procedure. So know that it is a real possibility. Dr. Luxford said there is no known reason why this 1% category exists. I can have my opinion, feelings, prejudices, (which I have about my Dr and Georgetown) but there is not one reason for the causes of 100% hearing loss with either prothesis. It just happens and that is life. 

Dr. Luxford is only 1 opinion, and he suggested I seek out more, but from ENT surgeons who work with the bucket handle prothesis. (The House ear Clinic uses the piston prothesis.) People on reddit want names, so I have a few: Dr. Bradley Kesser at UVA, Dr. Paul Lambert and Dr. Teddy McRaken at MUSC, Dr. Thomas Roland at NYU, and Dr. Douglas Backous in Pyuyallup WA. I have not researched what prothesis these Dr use as of this posting. He said it would be important to fid s a ENT surgeon that no only uses the bucket handle prothesis, but actually measures it. Its like finding a specialist of a specialist of a specialist! 

Knowledge is power. I wish my own Dr has explained this surgery better than he did – which was almost nothing at all. Ast hey used to say in ALON meeting I attended 35 yrs ago, take what you want here, that can be helpful, and leave the rest. 

I'm left with philosophizing about “Why me?” “What is the reason for all of this?” Questions I gave up asking years ago. At 55 yrs of age I am reminded that while I trust in science and medicine, its still not 100% perfect. I am mortal and this body I have will eventually give out. I've never had a testicle or breast removed for cancer, have never had a limb taken off in war, and have never had a debilitating disease like Parkinson's, Alzheimer's, or Multiple Sclerosis. I am other wise healthy, have some money in the bank a account at the end of the day, and have someone who loves me at night – and I still have one functioning ear. I am blessed despite the sudden loss of hearing caused by my own decision. I am human and I will survive and go on. Important to keep it in perspective the best you can.

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?