Decided to Have a Stapedectomy and Looking for Encouragement/Experiences with the Surgery

[Kiralm]

I was diagnosed with Otosclerosis and after my second audiogram my hearing loss has gotten worse after just two months in both ears (though I only have tinnitus in one) and so I have decided to go for the stapedectomy in the most affected ear.

Has anyone has one and could you give me some feedback on how it went for you and if you are happy with the operation.

I know that there is about a 50% change tinnitus will go away and if it doesn't I am at least hoping for some improvement, but not getting my hopes up too high and trying to stay realistic.

Some encouragement would also be welcome as I am a little apprehensive mostly for the recovery as I have two small children (2 years and 7 month) so that will makes things a bit more difficult in terms logistics and lifting restrictions.

 

[GregCA]

Hi,

I've had a stapedotomy about 4 years ago. The recovery is a bit tricky because of the packing in your ear: it makes you completely deaf in that ear, and with tinnitus, that's all you will hear full blast. Thankfully it's only for a few days, so you have to hang in in there. Get friends/family to support you during this recovery period to make it easier: you will need help with your kids for sure.

Other than that, get stats on your surgeon, not "general stats". You want to know how your surgeon fares: s/he has different stats from global stats.

You are right about the 50% chances of getting rid of tinnitus. I did it for tinnitus mainly, but my tinnitus didn't go away. There is a fairly high chance of getting some minor high frequency sensorineural losses from the surgery (I did), but the closure of the AB gap and recovery of hearing in the low frequencies has a very high success rate. Depending on where you start from, it can be night and day (it was for me), and that can help with tinnitus too, by letting environment noise blend in.

Of course, you have to be "comfortable" with the risk of total deafness (~1%) and things like facial paralysis, loss of smell/taste. Thinking of bad side effects is never fun. Generally speaking however, it is a surgery that has been done for decades and that has quite a high success rate.

Once your surgery is done and the ear has healed, in theory you can do pretty much everything again (swimming, diving, etc), but I personally try to take it easy on the ear (careful when blowing my nose, etc).

Good luck!

 

[Kiralm]

Hi Greg thanks so much for your feedback. I remember you saying in response to my first post intruding myself that your surgery did not get rid of tinnitus, but did it at least make it better?

You mention there is a fairly high chance of getting some minor high frequency sensorineural losses from the surgery and I am wondering why that would happen if I don't initially have sensorineural hearing loss in the first place (of course I don't know this for sure).

I noticed searching the internet that thee are not many posts from people sharing their experiences with stapedectomy and tinnitus and am wondering why that information is so hard to come by.

I have to say that initially all I cared about was the chance of getting rid of the tinnitus and the hearing loss did not affect me at all but now it is starting to bother me.

I do have a not so high frequency (or so it seems) ringing and some other kind of whistling (like air going through a pipe and making a slight whisper whistle) but the one that bothers me the most is the dull, vibrating droning sound like a generator emitting sound waves which drives me up the wall. I can live and function with it but find it so invading.

I'm rambling now but I will definitely try to just let whatever happens, happen.

 

[GregCA]

Hi Greg thanks so much for your feedback. I remember you saying in response to my first post intruding myself that your surgery did not get rid of tinnitus, but did it at least make it better?

I don't think it made it that much better on its own. Regaining hearing is probably what helped most.

You mention there is a fairly high chance of getting some minor high frequency sensorineural losses from the surgery and I am wondering why that would happen if I don't initially have sensorineural hearing loss in the first place (of course I don't know this for sure).

The losses are because of the trauma of surgery. You don't have to have initial losses to bear that risk.

I noticed searching the internet that thee are not many posts from people sharing their experiences with stapedectomy and tinnitus and am wondering why that information is so hard to come by.

That is true, and I've wondered the same thing.

I do have a not so high frequency (or so it seems) ringing and some other kind of whistling (like air going through a pipe and making a slight whisper whistle) but the one that bothers me the most is the dull, vibrating droning sound like a generator emitting sound waves which drives me up the wall. I can live and function with it but find it so invading.

You may be better off than me: I had sensorineural losses (due to otosclerosis!) pre-op, and my T was high pitch. I came across a paper that claimed that lower frequency T had higher chances of being addressed by the surgery than high frequency T.

Are you comfortable posting your audiograms? (blank out any personal info)

 

[Kiralm]

Are you comfortable posting your audiograms? (blank out any personal info)

 

[GregCA]

@Kiralm - you seem to, like me, also have some sensorineural losses. It could be due to otosclerosis as well (see http://eioftx.com/ear/ear-disorders/otosclerosis/ - in particular the section about Cochlear Otosclerosis). Beyond surgery, ask your doctor about treatments to help stop the progression of the disease.

I've been taking fluoride since my surgery, and while the success rate hasn't been stellar in studies, in my case something (either the study, fluoride, or something else) has changed and has kept my hearing from degrading further. Of course, I'm not happy about the heavy doses of fluoride I ingest daily, but it's a case of "damned if you do, damned if you don't".

When is your surgery scheduled for?

 

[Kiralm]

@Kiralm - you seem to, like me, also have some sensorineural losses. It could be due to otosclerosis as well in particular the section about Cochlear Otosclerosis). Beyond surgery, ask your doctor about treatments to help stop the progression of the disease.

I've been taking fluoride since my surgery, and while the success rate hasn't been stellar in studies, in my case something (either the study, fluoride, or something else) has changed and has kept my hearing from degrading further. Of course, I'm not happy about the heavy doses of fluoride I ingest daily, but it's a case of "damned if you do, damned if you don't".

When is your surgery scheduled for?

I still have not been scheduled but hoping for it to be soon.

I had a CT scan but nothing showed up and I had an MRI too to rule out other issues.

I read that this does not mean it's not Otosclerosis but would something not show up if there was sensorineural hearing loss? I'm afraid my knowledge is still quite limited!

 

[ankoump]

Don't mean to scare you off from going ahead but my stapedectomy completely messed up my tinnitus - prior to the surgery it was barely noticeable even in quiet places, however since having the surgery I have had myriad of baseline increases without any reason behind it. I am three years after the surgery and both my ears (prior to the surgery I only had tinnitus on the ear that was operated) are ringing like hell. What's worse is I don't know what is driving these increases and when (if) they will stop. I am stuck in hell.

Surgery was a success in terms of hearing loss as I have super hearing from that ear now. The healing process after the surgery is not the fondest of memories but after 2-3 weeks I was more or less back to normal.

In theory the percentages are in your favor but there's the remote chance (me) that this goes the other way.

It has also put me off from having surgery on the other ear and as such I have completely unbalanced hearing. Thus I am also not eligible for the Lenire treatment.

Happy to provide more info if you need.

 

[Kiralm]

Don't mean to scare you off from going ahead but my stapedectomy completely messed up my tinnitus - prior to the surgery it was barely noticeable even in quiet places, however since having the surgery I have had myriad of baseline increases without any reason behind it. I am three years after the surgery and both my ears (prior to the surgery I only had tinnitus on the ear that was operated) are ringing like hell. What's worse is I don't know what is driving these increases and when (if) they will stop. I am stuck in hell.

Surgery was a success in terms of hearing loss as I have super hearing from that ear now. The healing process after the surgery is not the fondest of memories but after 2-3 weeks I was more or less back to normal.

In theory the percentages are in your favor but there's the remote chance (me) that this goes the other way.

It has also put me off from having surgery on the other ear and as such I have completely unbalanced hearing. Thus I am also not eligible for the Lenire treatment.

Happy to provide more info if you need.

I'm so sorry it went so terribly wrong for you it's awful to be on the remoter side of the statistics.

My ENT said that it is important to take into consideration this possibility no matter how small and to go into it knowing and accepting the risks.

All this is so hard. How bad was your hearing loss before the surgery? Before the surgery did the tinnitus bother you a lot or not really?

 

[ankoump]

My hearing loss was a bit over 60db at 500-1000 hz in both ears, so worse than yours. Not sure what your age is, but the advice generally is to have the operation as late as possible letting otosclerosis evolve. I did mine at 37, after many years of being hard of hearing, as I was unable to function anymore -borderline deaf. And I hated hearing aids (in retrospect I should have tried harder adapting).

It's gad dam awful to be on the wrong side of statistics but it is what it is, I knew the risks and at least I can function at home and (especially) work. My tinnitus prior was completely irrelevant, I would have to be in a completely quiet environment to hear it.

Nobody can decide for you, your doc is right about knowing the risks and making an informed decision. Where I am now, I wouldn't dare operate the other ear, but my online research tells me I am an extremely small minority.

My experience should not stop you from going ahead (if it's really needed) but it should make you aware of the (seemingly minimal) risks relating to potential negative impact on one's tinnitus.

Whatever you do research for a good doctor. And don't blow your nose or sneeze (or go diving)!!

Edit:Just read you have two kids, the only time I wanted my kids to be as far as possible was during recovery. You will need help.

 

[Kiralm]

Yes your hearing loss was worst and when it becomes so bad it's difficult to live with it.

mine is not bad but it is starting to be noticeable to me.

I never heard that it was best to do let the otosclerosis evolve before doing the operation; what's the reasoning behind that? I would have thought beat to do it as early as possible to avoid it causing sensorineural loss if you didn't have it to begin with.

I am 43 and had my kids late and close to each other using IVF treatments and I think this has accelerated it as I understand hormones can do that.

I have options of being away from my children for the first week but don't think I can hack not seeing them though perhaps I will stay at my sister in laws and their dad can bring them to visit everyday.

My oldest is only two so won't fully understand.

I do have lots of help though so that's something

 

[ankoump]

Through the years I visited many different ent's both in Greece and uk, all of which advised me to wait it out on the basis of letting the otosclerosis evolve and only having the surgery if it's really needed. You might be right on the sensorineural loss, worth asking your doctor.

You will be fine as long as you have someone doing the major chores - it's just a drag but after 2-3 days you can spend some time with the kids. Within a week you will be back to almost normal, 2-3 weeks to fully heal. I flew 3-4 weeks after the surgery (doc wasn't really happy).

 

[GregCA]

Not sure what your age is, but the advice generally is to have the operation as late as possible letting otosclerosis evolve.

I think it depends on how it evolves. Generally, O evolves very slowly (it takes years and years to build up heavy losses), but in some cases like mine, a 55 dB air-bone gap appears in 2 months and the disease starts damaging your cochlea as well, so it may be worth taking that into consideration when deciding what to do.

I never heard that it was best to do let the otosclerosis evolve before doing the operation; what's the reasoning behind that? I would have thought beat to do it as early as possible to avoid it causing sensorineural loss if you didn't have it to begin with.

Anecdotally, post surgery, my sensorineural hearing loss has not progressed (it was quite active before surgery), and more importantly to me, the surgery got rid of most of my hyperacusis (which was disabling - that alone was worth it to me). Perhaps the former is due to the fluoride I'm taking now, I don't know.

I am 43 and had my kids late and close to each other using IVF treatments and I think this has accelerated it as I understand hormones can do that.

Indeed, I also read this.

I have options of being away from my children for the first week but don't think I can hack not seeing them though perhaps I will stay at my sister in laws and their dad can bring them to visit everyday.

My oldest is only two so won't fully understand.

My daughter was 2 and a half when I did mine. It was a bit of a struggle because she couldn't comprehend what was happening to me, but it was workable.

I do have lots of help though so that's something

It is actually quite important. I needed quite a lot of help.
Is your surgeon going to do general anesthesia or local?

 

[Kiralm]

I think it depends on how it evolves. Generally, O evolves very slowly (it takes years and years to build up heavy losses), but in some cases like mine, a 55 dB air-bone gap appears in 2 months and the disease starts damaging your cochlea as well, so it may be worth taking that into consideration when deciding what to do.

Anecdotally, post surgery, my sensorineural hearing loss has not progressed (it was quite active before surgery), and more importantly to me, the surgery got rid of most of my hyperacusis (which was disabling - that alone was worth it to me). Perhaps the former is due to the fluoride I'm taking now, I don't know.



Indeed, I also read this.



My daughter was 2 and a half when I did mine. It was a bit of a struggle because she couldn't comprehend what was happening to me, but it was workable.



It is actually quite important. I needed quite a lot of help.
Is your surgeon going to do general anesthesia or local?

My loss has increased in just 2 months so not so keen on waiting any longer and I am very thankful for the help I have.

It will be under general anaesthesia.

my son loves for me to pick him up and will probably be upset that I won't but I will explain to him as best I can.

I definitely think my pregnancies have accelerated my Otosclerosis. It seems very obvious and I can't think of another reason it would go so fast.

 

[Kiralm]

Through the years I visited many different ent's both in Greece and uk, all of which advised me to wait it out on the basis of letting the otosclerosis evolve and only having the surgery if it's really needed. You might be right on the sensorineural loss, worth asking your doctor.

You will be fine as long as you have someone doing the major chores - it's just a drag but after 2-3 days you can spend some time with the kids. Within a week you will be back to almost normal, 2-3 weeks to fully heal. I flew 3-4 weeks after the surgery (doc wasn't really happy).

Through the years I visited many different ent's both in Greece and uk, all of which advised me to wait it out on the basis of letting the otosclerosis evolve and only having the surgery if it's really needed. You might be right on the sensorineural loss, worth asking your doctor.

You will be fine as long as you have someone doing the major chores - it's just a drag but after 2-3 days you can spend some time with the kids. Within a week you will be back to almost normal, 2-3 weeks to fully heal. I flew 3-4 weeks after the surgery (doc wasn't really happy).

Not planning on flying anytime soon and I may be able to wangle a 2 night stay at the hospital and my son can come and visit like he did when I had my daughter and would understand that better than coming to see me at my sister in laws and wondering why I left! My poor little Sweet Pea.