Living with Otosclerosis

I’m really hoping someone here can reach out if you’ve actually gone through an otosclerosis surgery before.
I’ve been dealing with some pretty frustrating hearing issues since I was pregnant, and now my doctor is starting to suggest that surgery might be the best way to go.
Has anyone else here actually had this done? I’d love to hear about your experience and if you’re feeling happy with the results now that it's over.
Sending hugs,

I wasn't there for the actual surgery myself—but a colleague of mine actually wrote her thesis on this exact topic, so she spent a ton of time working with patients dealing with otosclerosis. Looking through some old files, it looks like the procedure is incredibly effective. How much hearing loss are we talking about here? And what did your tympanogram show?

So, I’ve been dealing with some hearing loss lately, and honestly, it’s gotten to a point where it’s pretty noticeable. If things just stayed exactly as they are right now, I think I could probably live with it without making a huge fuss, you know? But here’s the kicker—I’m really worried about the possibility of things taking a turn for the worse. There’s this issue with otosclerosis that can actually worsen over time in certain cases, and the thought of my hearing dropping even further is definitely weighing on me. Does anyone here happen to have any insight or firsthand info regarding how successful these surgeries actually are?
thanks so much much
best regards

Yeah, from what I’ve heard lately, that surgery is a success about 90% of the time—we're talking hearing improvements of over 10 dB post-op. Only about 1% of cases actually see things get worse. It really just comes down to who’s performing the procedure—honestly, there aren't many top-tier ear surgeons in the US who you can truly trust. If you're looking, I can definitely give you some recommendations for a world-class 🙂

I just had an audiology exam done at the hospital, and here’s what they told me:

Clinical ENT status is normal.
OTS: bilateral otosclerosis
Audiometry shows right-sided mixed hearing loss 50-20-35dB , while hearing on the left side is within normal limits.
Bilateral tympanogram Type A curves, though the right shows absence of the acoustic reflex.
Most likely dealing with otosclerosis in the right ear.
A consultation with an otolaryngologist at Mayo Clinic is recommended.

If necessary, I can send over the specific data points from the report—the X-axis values (ranging from 125 to 8000, which I assume are Hertz) and the Y-axis values (ranging from -10 to 110, assuming those are decibels or perhaps some percentage of hearing?).

-I've been doing some digging online regarding otosclerosis and potential treatments.
There’s mention of stapedectomy, and I stumbled upon stapedotomy on one site as a surgical method for treatment.

1) Which of these methods is more commonly used in the US today, what actually distinguishes them, and which one yields better outcomes?
How precise are these surgeries? What is the likelihood—honestly, how high is it—that a surgeon could slip up and a single wrong cut leads to permanent, total hearing loss?

2) Regarding the report, what does the phrase "absence of acoustic reflex" actually imply?

3) Based on these figures—50 (at 125 Hz), 20 (at 4000 Hz), and 35 (at both 2000 and 8000 Hz)—roughly what percentage of hearing loss am I looking at? (The doctor didn't bother explaining this during our brief chat.)

Do I need to rush to see an ENT specialist and schedule a surgery date immediately?

Thanks in advance to anyone who has gone through this and can share their experiences, or to any medical professionals out there who might have expertise in these procedures.

Is there a doctor (or maybe even a patient) on this flight??😍🤷

Jack, I might be able to help you out, though most of my own research has just been digging through various medical sites online. Of course, your best bet is still consulting with an ENT specialist (I assume you’ve already done that?).

Essentially, stapedotomy and stapedectomy are just different approaches to the same procedure: removing the stapes—that tiny third bone in the chain between your eardrum and the cochlea—and replacing it with a prosthesis to handle the vibration transfer. In my experience, doctors described it as a routine procedure with a success rate around 95%, while complications are quite rare, occurring in maybe 1% of cases.
Regarding your results, a bilateral Type A tympanogram indicates that both Eustachian tubes are functioning normally. As for the "STAR," I believe that refers to the acoustic reflex in the middle ear; if that reflex is absent, it usually suggests the ossicles are fixed in place. My report mentioned CSR (cochlear-stapedial reflex), which I suspect is essentially the same thing.
I don't know much about exostoses, but I imagine that involves narrowing of the ear canal, which could also contribute to hearing loss. It seems likely they would address that issue before proceeding with a stapedotomy.

The surgery itself typically takes anywhere from thirty minutes to an hour under general anesthesia. Afterward, many patients deal with some level of vertigo because the equilibrium center in the ear gets disrupted. Depending on how intense those dizzy spells are, your hospital stay could range anywhere from a few days to about ten.

If there is anything else you want to dig into, feel free to ask.
Best of luck!

Anyone here actually gone through with the procedure? Looking for some real feedback on how it went.

Kyle Sanders said:Hey Jack! I might be able to help you out, though honestly, most of my own info came from scouring the internet. Of course, your best bet is seeing an ENT specialist (you probably already have one on speed dial?).

Stapedotomy and stapedectomy are essentially two sides of the same coin—they involve removing the stapes, that tiny third bone in the ear chain sitting between the eardrum and the cochlea, and replacing it with a prosthesis to handle the vibration transfer. In my experience, doctors frame this as routine stuff; they claim a 95% success rate, with complications popping up in maybe 1% of cases.
Having bilateral Type A tympanograms means both of your Eustachian tubes are working fine. As for that STAR reading, I believe it refers to the middle ear muscle reflex; if there’s no reflex, it usually implies those little bones are stuck. My report mentioned CSR (cochlearstapedial reflex), which I assume is just another way of saying the same thing.
I don't know much about exostosis, though I gather it's some kind of narrowing in the ear canal that can muffle sound. My hunch is they'll tackle that first before even considering the stapedotomy.

A stapedotomy typically takes about thirty minutes to an hour under general anesthesia. Most people deal with some level of vertigo afterward because you're messing with the inner ear's equilibrium center. Depending on how hard you get hit by the dizziness, you could be looking at a hospital stay anywhere from a few days to ten.

If you have more questions, just fire away.
Good luck!

Ugh, I only just noticed this reply today... so I'm a bit late to the party.
THANKS SO MUCH for all the explanations and advice!🙂

I haven't actually had my appointment yet. Dr. M. Ries was slammed back in July, and when I finally tried to book something last year... well, when I called in July to grab a slot, the scheduling office gave me January 29th, 2015.
That's today. I'm heading over to Mayo Clinic around 2:30 PM.😛

If I'm following you correctly, the priority is dealing with the exostosis (the narrowing in the ear) first, and that meatoplasty is done under general anesthesia, right?
Or is there a chance they could push that off until after the stapedotomy, since that's the bigger issue? Or perhaps, if the exostoses aren't massive, maybe they won't even bother,not until they grow significantly larger...is that a realistic possibility?

If they do decide to clear out the exostoses first, how long is the typical gap between procedures? ( Is it 3 or 4 months, or longer?) ...When would they likely perform the STAPEDOTOMY, that part where they install the prosthesis after removing the ossicles that aren't vibrating properly?
And that's also under general anesthesia, correct?

Thanks in advance

shadowcanyon3 said:Uh, just saw this reply today... which is why I'm only getting back to you now...
Thanks a ton for all the help and the advice... really appreciate it...!🙂

Haven't even made it to my appointment yet... Dr. Michael Ries was slammed back in July, and honestly, he was booked solid all through last year too. When I finally called up in July to try and get on his calendar... the scheduling office just handed me a date for January 29th, 2015. Real efficient...
It's happening today... heading over to KB SM after 2:30...😛

So, if I’m getting this right... first thing on the agenda is that stapedectomy surgery for the stenosis, and then they do the meatoplasty under general anesthesia, right? Is that how it works...?
I mean, can you just... push it back? Like, after the stapedotomy? That’s obviously the priority here... and if those cholesteatomas aren't actually that massive, maybe it's fine to wait... might not even work... honestly, who knows at this point...,...until they actually get big enough....so, is there any chance for that too? maybe...

If they actually end up making that first round of exhaust fixes... how long does the gap usually last after that...? So... 3, 4 months or even longer? ...wondering when they're actually gonna get around to performing my STEEPEDOTOMY... So... what about getting a denture fitted after they pull those little bone fragments that just don't handle the vibrations right? ...not sure how much sense that even makes... but yeah...
Same goes for general anesthesia, right...?

Thanks in advance...

Hey, I see you're hanging around this thread too... so, look, just give me the rundown on how this all works. I'm honestly stuck... not sure if I should go out and bother another doctor or what...

Hey,
Could anyone who’s gone through surgery share what their recovery was actually like?
Specifically, did you deal with dizziness, and if so, how long did that last?
Best,

Linda Garcia41 said:Hi there,
I'm looking for anyone who's had this surgery to share their recovery experiences. Specifically, I'm wondering how long the dizziness lasted, or if anyone even dealt with it at all.
Best,

I had my procedure about two and a half months ago. To be honest, I didn't deal with any dizziness or nausea whatsoever. There wasn't even any pain, which was a relief. I'm incredibly happy with the results; my hearing is almost back to where it should be. It's a massive improvement. I can hear quite clearly now.

That’s great news. Thanks for getting back to me. I’ve got surgery coming up in about a month, so hopefully I’ll have the same luck. 😉)
Just wondering, where did you have yours done?

Linda Garcia41 said:This is great news. Thanks for getting back to me. I have my surgery coming up in a month, so hopefully, everything goes just as smoothly for me.😉)
If you don't mind me asking, where did you have the procedure done?

I had my surgery at Mount Sinai, and my doctor was Michael Ries. Honestly, I can't say enough good things about him—he’s truly exceptional.

So, I went under the knife yesterday, but just local anesthesia. They gave me the choice between going under completely or staying awake, and honestly, I preferred knowing exactly what was going down. It’s not exactly a spa day, though—kind of like being a lab rat in a science experiment where they're poking around your head. It doesn't actually hurt, but it's definitely weird. Yesterday was pretty rough, so I had to grab a painkiller, but today I'm feeling alright. My hearing is still a bit wonky, but the doctor says we'll see if things normalize once it heals up over the next few days. Still got the cotton and a bandage in my ear. Surprisingly, I didn't get hit with any dizziness at all...

slytinker said:I had my surgery yesterday under local anesthesia. I could have gone with general, but I preferred knowing exactly what was going on. It’s not exactly pleasant while they work—kind of like being a lab rat under sedation; even if it doesn't hurt, having someone poking around in your head is unsettling. There was some pain yesterday, so I needed a painkiller, but I'm feeling alright today. My hearing isn't back to normal yet, but the doctor said we'll see how it settles once things heal up over the next few days. I still have the cotton and a bandage in my ear. No dizziness or anything like that, though...

Hey,
how are you holding up, and where did you have the procedure done?

Hi everyone, I have a question because I just received some information about the possibility of surgery for those dealing with otosclerosis. Here is my dilemma: I’ve been living with this condition for about 15 years now, and my hearing has been steadily declining. It feels like I’ve finally hit the limit—as if I'm approaching total deafness. Given how significant the hearing loss has become at this stage, would surgery even be an option? Would it actually work after such a long period of decline? I would appreciate any insight you all might have. Thanks for the help.

Hey there. I had my surgery three months ago. Everything went smooth. By the second day, the pain was already pretty much gone. I dealt with some dizzy spells during those first two weeks, but nothing crazy. After two weeks, they pull out the ear tampons, which isn't even a big deal. Once those are out, you can actually hear again—and once everything settles into place, it’s even better. Honestly, I can hear perfectly through this ear now. I’d almost forgotten how annoying it was being hard of hearing and having to constantly ask people to speak up. No more dodging quiet talkers, and I’ve only even tackled one ear so far. For the second one, I have to wait six months to see how my body reacts to those titanium implants they use instead of the bone fragments. It’s a one-in-a-million chance of rejection, and if that happens, they have to pull the hardware out and call it quits on the second surgery. That’s why the waiting period exists. Overall? I'm stoked. The only thing is my ear gets a little sensitive sometimes; if a sound is too loud or high-pitched, it feels like a tiny speaker is rattling inside my head. But hey, it’ll probably pass. Even if it doesn't, it’s nothing compared to the nightmare of not being able to hear. I had the procedure in Cleveland with Dr. Velepić.

🙂

Steven Carter29 said:Hey everyone, quick question. Just found out surgery is an option for people with otosclerosis. Here’s my situation: I’ve been dealing with this for about 15 years now, and my hearing just keeps getting worse. It feels like I’m hitting that wall where I'm basically deaf. Is surgery even worth it at this stage? Would it actually work if the hearing loss is this severe? Thanks for any input.

Hey. You really need to talk to a doctor about this. I used to worry that there was some cutoff point where surgery wouldn't help anymore—I was so stressed about hitting that limit that I rushed through surgery on my other ear. But my doctor told me that wasn't really how it works; you can still go through with it later on. Obviously, you need to get the specifics from a specialist, though. If they tell you it won't work, I'd say get a second (or third) opinion.

Hi there,

I’ve been dealing with a diagnosis of otosclerosis since back in 2010, though things have actually stabilized quite a bit since then. What I really wanted to ask is whether anyone else here deals with actual pain. Every medical resource I read claims that otosclerosis isn't supposed to be painful, but for me, it absolutely is. It’s not just a nuisance; any loud noise can trigger a sharp sensation, and even worse, if someone so much as touches my ear or anything near it, the pain is so intense I can't even tell where it's coming from—it feels like my tooth, my head, my neck, or my ear are all hurting at once. It’s this bizarre, jarring feeling, almost as if something inside shifted and threw my entire equilibrium out of whack. Has anyone else experienced these kinds of symptoms? My doctor was honestly stumped when I brought it up.
Aside from the discomfort, my hearing in that ear has always been a little weaker, though I’d say it’s still within a normal range.