REVIEW: Round and Oval Window Reinforcement Surgery for Hyperacusis — The Silverstein Institute

[Philip83]

I don't think any of them got significantly worse, but even mildly worsening hyperacusis would be tough on me.

But yeah even a small chance of worsening my hyperacusis is making me pause on this for the time being

Alright. But they did it at the Silverstein Institute, or?

I have the same concerns. Also, I'm scared my already very bad tinnitus will worsen too, and also I don't want to plug my round window up and not be able to get all the juicy hearing restoration gels that hopefully will be coming our way in the upcoming years.

 

[Mrkbek]

Hey guys, sorry for being MIA.

I didn't get notifications and just haven't gotten back in to check on how the discussion has been going. While I did have great results from the surgery, I'm still much in the same place I was before. I plug and muff up constantly and every time I go out.

My reactive tinnitus is the biggest issue now. So trying to protect that is the hardest.

One thing that the LDL tests don't test is the duration of sounds. They test short duration beeps but not things like road noise or constant typing on a computer. So in that regard, my hyperacusis can still be flared up. The surgery mainly helped the tink and clank noises and my ears shutter less. My right ear has held up decently and I'm thinking about going back to get the left done for balance.

Many of the roadblocks ahead for me are regarding my anxiety but I also feel they are justified because even the slightest sounds can trigger the reactive tinnitus. No regrets on the surgery overall and I'd say maybe still experiencing 5% of the fullness but nothing bothersome. Haven't noticed the hearing loss either. I also heard from the lady that got surgery in Europe and it doesn't sound as controlled or proven as Silverstein. My advice for anyone would be do it right with the Silverstein Clinic or not at all.

I hope to be more responsive with you guys here. Again, sorry for not being around!

 

[Philip83]

@Mrkbek, with "reactive tinnitus", do you mean that the tinnitus can spike over a period after being exposed to noise, or do you mean it's increasing along side the noise? Or both?

 

[Mrkbek]

@Philip83, spikes, flutters, volume shifts from things as quiet as air vents or as loud as car horns. It can be very unpredictable too.

 

[VeryUnfortunate]

@Philip83, spikes, flutters, volume shifts from things as quiet as air vents or as loud as car horns. It can be very unpredictable too.

How are you doing now?

 

[Philip83]

How are you doing now?

Tinnitus still the same and as annoying as ever.

Hyperacusis, noxacusis, ear pain and TTTS still way better since getting the hearing aids.

 

[VeryUnfortunate]

Tinnitus still the same and as annoying as ever.

Hyperacusis, noxacusis, ear pain and TTTS still way better since getting the hearing aids.

Well it is good to hear that at least the hyperacusis got better for you.

Do you wear hearing protection in public? How are everyday noises for you, like dishes, A/C, stuff like that?

 

[Shizune]

I had a virtual meeting with Silverstein's office and asked about FX-322 and he said that there shouldn't be an issue getting intratympanic injections.

By the way, he doesn't do the surgery himself anymore since he's so old. Other doctors in the clinic do. But they've trained enough to know it well.

I asked one of the top ENTs in my area if he'd be willing to do it and he said no. It seems a lot of ENTs push back on the idea. So I reckon it's go to Florida or do nothing at all.

 

[nogg]

It seems to me that the procedure could be useful if the hyperacusis problem derives from a hypermobile stapes bone, but not really for other causes. A hypermobile stapes bone could be caused by something like a car accident, congenital issues if someone has had hyperacusis all their life, or maybe an explosive noise trauma.

Unfortunately, they can't tell before the procedure if the stapes bone is the problem. If the hyperacusis is from some other issue, perhaps OHC destruction, then it wouldn't be primarily helped by the procedure. But, any stiffening of the stapes bone would indeed reduce transmission of small impact noises. I must wonder if that is why the procedure seemed to help @Mrkbek with the tinkling noises but not with things like road noise or continuous keyboard typing.

I think anyone considering this procedure should think carefully about the likely cause of their hyperacusis when deciding whether to go ahead or not. Otherwise, the results could be disappointing and for a considerable sum ($16-$20k for both ears.)

 

[Athens]

It seems to me that the procedure could be useful if the hyperacusis problem derives from a hypermobile stapes bone, but not really for other causes. A hypermobile stapes bone could be caused by something like a car accident, congenital issues if someone has had hyperacusis all their life, or maybe an explosive noise trauma.

Unfortunately, they can't tell before the procedure if the stapes bone is the problem. If the hyperacusis is from some other issue, perhaps OHC destruction, then it wouldn't be primarily helped by the procedure. But, any stiffening of the stapes bone would indeed reduce transmission of small impact noises. I must wonder if that is why the procedure seemed to help @Mrkbek with the tinkling noises but not with things like road noise or continuous keyboard typing.

I think anyone considering this procedure should think carefully about the likely cause of their hyperacusis when deciding whether to go ahead or not. Otherwise, the results could be disappointing and for a considerable sum ($16-$20k for both ears.)

Does OHC destruction mean outer hair cell destruction? What are some of the theories of the cause(s) of hyperacusis? I always thought that the brain was turning up the volume because it is not receiving the same input as in the past.

 

[nogg]

Does OHC destruction mean outer hair cell destruction? What are some of the theories of the cause(s) of hyperacusis? I always thought that the brain was turning up the volume because it is not receiving the same input as in the past.

There are two levels of amplification in the hearing system. The first level is in the cochlea. The OHC acts as a mechanical amplifier in a circuit along with the IHC. When the OHC is damaged, the amplification circuit is also damaged and the volume is inappropriately increased. The second level is in the central auditory system from sensitization of the central neuronal pathways. So the amplification system can go awry in various areas. This is discussed in Jastreboff's book "Tinnitus Retraining Therapy: implementing the neurophisiologic model." Of note, these are theories and there is no conclusive evidence of exactly what is going wrong, but seems to be the best explanation so far.

I suppose a hypermobile stapes could be a third level where amplification can go wrong, and certainly that does happen in some cases. But if a hypermobile stapes is not the problem, then stiffening it through artificial reinforcement won't fix the problem. It might diminish it because the stapes would be stiffer and less reactive to sounds, much like when using earplugs, but it wouldn't address the real issue. The Silverstein website has a number of videos too watch and some include patient testimonials, so those would be good to watch.

 

[DebInAustralia]

Tinnitus still the same and as annoying as ever.

Hyperacusis, noxacusis, ear pain and TTTS still way better since getting the hearing aids.

So to be clear, when you say your 'tinnitus is the same ...' do you mean the volume is the same, or you are still annoyed by it regardless of the reduced volume?

In another post you said the hearing aids didn't reduce your volume (I think) but it did help you not care about it as much?

Great news about your hyperacusis, ear pain, and TTTS though.

Thank you for reporting.

What's your next step?

 

[lil]

@Mrkbek may I ask how are you feeling since your surgery?

 

[Philip83]

So to be clear, when you say your 'tinnitus is the same ...' do you mean the volume is the same, or you are still annoyed by it regardless of the reduced volume?

In another post you said the hearing aids didn't reduce your volume (I think) but it did help you not care about it as much?

Great news about your hyperacusis, ear pain, and TTTS though.

Thank you for reporting.

What's your next step?

Yes, you're right, they did not affect the volume of my tinnitus, but did indeed affect my habituation / annoyance level, which is still pretty good.

No next step planned atm to be honest. Waiting for a medical cure I guess...

 

[DebInAustralia]

Yes, you're right, they did not affect the volume of my tinnitus, but did indeed affect my habituation / annoyance level, which is still pretty good.

No next step planned atm to be honest. Waiting for a medical cure I guess...

How do you think it helped with your habituation?

 

[Philip83]

How do you think it helped with your habituation?

I think mainly because the pain / noxacusis got better, which made it possible to focus less on my ears and sounds around me, which in turn makes me think less about tinnitus. I was pretty much habituated before my worsening of hyperacusis, and now I'm more or less back to where I were before the last noise trauma.

 

[Jerad]

Tinnitus still the same and as annoying as ever.

@Philip83, is your tinnitus just a sound? Or is it a feeling/sensation, too? I also have the crickets type sound, but it has an electrical quality and causes sensations of physical pain, like shocks. I get these zaps that feel like jolts of electricity. Very high frequency. Do you have that type of tinnitus at all?

I'm also looking into hearing aids.

 

[Philip83]

@Philip83, is your tinnitus just a sound? Or is it a feeling/sensation, too? I also have the crickets type sound, but it has an electrical quality and causes sensations of physical pain, like shocks. I get these zaps that feel like jolts of electricity. Very high frequency. Do you have that type of tinnitus at all?

I'm also looking into hearing aids.

Yeah, I'd say it's a "feeling" too. I think this has to do with the high frequency of the sound. Mine definitely has an electrical quality to it as well.

I get something that sounds like that jolts you're experiencing from sudden sounds, sometimes more than not. I think it's a combination of what is called "recruitment" and distorted hearing. It's a sudden "flash" of "ssshhhh" that increases if someone yells or something. Is that what you mean?

 

[UKBloke]

I think it's a combination of what is called "recruitment"

I'd just like to chime in with a comment here. I experience these exact phenomena. When I explained them to an audiologist last year she said,"it sounds like recruitment".

Some time after that appointment, I had a chat with Neil Bauman. He stated that he didn't think it was recruitment because recruitment always comes with quite severe hearing loss, which I don't have.

At first I was inclined to agree with Neil but on reflection I've changed my mind. It seems perfectly reasonable to me that recruitment is occurring but that it is beyond those frequencies that a standard audiogram tests for and are therefore not being reported as a hearing loss. In fact, I'd go further and say these effects could also be potentially firing around inter-harmonic frequencies that might even evade the extended audiogram.

My take away from this is that as surrounding hair cells at these very high frequencies die off with age, there will be a good chance that the recruitment effect will normalise or at least subside somewhat. This is my own version of a bit of light at the end of the tunnel anyway.

 

[Jerad]

Yeah, I'd say it's a "feeling" too. I think this has to do with the high frequency of the sound. Mine definitely has an electrical quality to it as well.

I get something that sounds like that jolts you're experiencing from sudden sounds, sometimes more than not. I think it's a combination of what is called "recruitment" and distorted hearing. It's a sudden "flash" of "ssshhhh" that increases if someone yells or something. Is that what you mean?

Well, the jolts or electrical shocks I get are part of the tinnitus itself, not a reaction to sensitive sounds from hyperacusis. So I can be in a completely silent room and I'll randomly hear what sounds like train breaks squealing or car breaks, and it's sharp, like a quick zing that lasts 1 second or so, and with it comes the sensation of sharp pain. Like if I was exposed to that sound in real life, that's what my ear would feel.

And it happens at least a few times a minute, sometimes more. You never know when it'll strike. So it's weird how the brain mimics the characteristics of real sound exposure.

Also, I get tinnitus that sounds like stream escaping through the ear or something, and it feels that way, too, with the pressure. Those attributes are the most distressing element of the tinnitus. If my tinnitus was just a sound and not a painful feeling, it'd be a lot more tolerable. It's already enough that you gotta hear it, but to feel it, too, takes it up a big notch.

Did the hearing aids help that feeling aspects, @Philip83?

 

[Philip83]

Well, the jolts or electrical shocks I get are part of the tinnitus itself, not a reaction to sensitive sounds from hyperacusis. So I can be in a completely silent room and I'll randomly hear what sounds like train breaks squealing or car breaks, and it's sharp, like a quick zing that lasts 1 second or so, and with it comes the sensation of sharp pain. Like if I was exposed to that sound in real life, that's what my ear would feel.

And it happens at least a few times a minute, sometimes more. You never know when it'll strike. So it's weird how the brain mimics the characteristics of real sound exposure.

Also, I get tinnitus that sounds like stream escaping through the ear or something, and it feels that way, too, with the pressure. Those attributes are the most distressing element of the tinnitus. If my tinnitus was just a sound and not a painful feeling, it'd be a lot more tolerable. It's already enough that you gotta hear it, but to feel it, too, takes it up a big notch.

Did the hearing aids help that feeling aspects, @Philip83?

That jolt-thing even without sounds must be terrible, I'm sorry. I actually feel that my jolts are a little worse sometimes when I wear the hearing aids, but the pain from them is reduced.

If I were you I would check if you can try some hearing aids and just see how it goes. At least here in Sweden you can try them for free for a few weeks even. Not sure where you are at, but maybe the same thing applies there.

 

[Philip83]

I'd just like to chime in with a comment here. I experience these exact phenomena. When I explained them to an audiologist last year she said,"it sounds like recruitment".

Some time after that appointment, I had a chat with Neil Bauman. He stated that he didn't think it was recruitment because recruitment always comes with quite severe hearing loss, which I don't have.

At first I was inclined to agree with Neil but on reflection I've changed my mind. It seems perfectly reasonable to me that recruitment is occurring but that it is beyond those frequencies that a standard audiogram tests for and are therefore not being reported as a hearing loss. In fact, I'd go further and say these effects could also be potentially firing around inter-harmonic frequencies that might even evade the extended audiogram.

My take away from this is that as surrounding hair cells at these very high frequencies die off with age, there will be a good chance that the recruitment effect will normalise or at least subside somewhat. This is my own version of a bit of light at the end of the tunnel anyway.

This all sounds very plausible!

 

[Travis Henry]

Am I a good candidate for this procedure?

I have had pretty bad tinnitus since January. It was very intrusive and then in April I got more noise exposures & then same week (might just be a coincidence) a doctor used a low level laser therapy on me and my sound sensitivity became to a point that my tinnitus reacts to most all sounds.

I am living in hell and can't control my sound environment enough to keep tinnitus stable. I only seem to have loudness hyperacusis, not feeling any pain.

I just want to be able to listen to music again, go outside and speak to people in person & on phone without tinnitus reacting to it.

 

[Mrkbek]

@Travis Henry, I'm sorry you've discovered the tinnitus and hyperacusis community! Hoping for your recovery. It seems you would be a good candidate, but definitely reach out to The Silverstein Institute and talk with Dr. Silverstein and Dr. Nayak to get their evaluation of your case. It's required prior to surgery anyway, so good to get it scheduled. Good luck and well wishes.

 

[LilCC]

I honestly don't think this surgery would do anything for noxacusis. I mean I want to get it done but I also don't want to waste $8k for something that's going to barely make a difference. I see how this would work for loudness hyperacusis, but I haven't seen many people with pain hyperacusis have success with this surgery. It makes sense, noxacusis is way deeper in the ear and there is definitely nerve damage to the cochlea, as apposed to loudness hyperacusis which seems to be more related to the brain's perception of sound. It's all theory though, I'm still looking for people with noxacusis that had success with this surgery.

 

[Philip83]

I honestly don't think this surgery would do anything for noxacusis. I mean I want to get it done but I also don't want to waste $8k for something that's going to barely make a difference. I see how this would work for loudness hyperacusis, but I haven't seen many people with pain hyperacusis have success with this surgery. It makes sense, noxacusis is way deeper in the ear and there is definitely nerve damage to the cochlea, as apposed to loudness hyperacusis which seems to be more related to the brain's perception of sound. It's all theory though, I'm still looking for people with noxacusis that had success with this surgery.

I was considering this surgery but when I decided to try hearing aids for my tinnitus, to my surprise it improved my noxacusis by like 80%. I would recommend you trying it.

 

[LilCC]

I was considering this surgery but when I decided to try hearing aids for my tinnitus, to my surprise it improved my noxacusis by like 80%. I would recommend you trying it.

Hello my friend, I've always been hesitant to use any type of hearing aid for my noxacusis, I can barely tolerate any sound, even with double protection. How long have you had noxacusis and what are your symptoms?

 

[Philip83]

Hello my friend, I've always been hesitant to use any type of hearing aid for my noxacusis, I can barely tolerate any sound, even with double protection. How long have you had noxacusis and what are your symptoms?

You can read a detailed review by me here: https://www.tinnitustalk.com/posts/630620

 

[MusicTeacher]

My hyperacusis has been beating me up pretty good the last couple of years.

I'm wondering if there are any more stories/opinions from people who've had the surgery. I'm getting desperate for some relief but want to know this surgery won't be waste of time... or make things worse. I have an online meeting with them in two weeks.

Thanks!