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

[Mrkbek]

@Brian Newman, the hearing loss is only in the highest frequencies so not as bad as it seems. And yes, the tinnitus is largely unchanged.

 

[ZFire]

Do you get pain afterwards?

No pain, but more like ear fatigue. Ear fullness and they easily make popping sounds.

 

[Juan]

No pain, but more like ear fatigue. Ear fullness and they easily make popping sounds.

The tricky thing is symptoms, at least in my particular case, change over time, and sometimes there is a new thing out of the blue, a new symptom, or different hearing perceptions, or hearing loss... for me this has been a slow process, and even if I visited tons of doctos there does not seem to be a solution.

 

[Taw]

Tbh, I don't really understand the difference between loudness and pain hyperacusis and I feel it might just be semantics between people with different severity of hyperacusis.

I mean, even before hyperacusis, if something was too loud it "hurt", at least for me. And how can you get a result of 50-60 dB on an LDL test if you're not hurting when it becomes too loud? Is it pure phonophobia then? Or is pain hyperacusis when the pain is lingering after loud noises?

Loudness is when you go to a party, sit near speakers and feel that the music is too loud for you. Same with loudness hyperacusis.

Pain hyperacusis is when you feel that someone is stabbing you with a burning knife in the ears and you have to take medication to ease the pain. And for many of us (like myself), the pain is not just instant pain, but it lasts for days/weeks. I am in 2 weeks of constant pain lately.

Here is another explanation:

 

[Philip83]

@Philip83, the 30-40 dB hearing loss I reported in my right ear was POST-op as a result of the surgery. The only loss that had shown in previous pre-op Audiograms was all less than 10 dB, which is not considered hearing loss. I posted an updated LDL test 30 days post-op but did not do a hearing test alongside it.

Jesus. So a 20-30 dB dip post-op? That's a pretty severe hearing loss. I think you should go and do another audiogram, or a few more over the next months, to see how it develops.

 

[Philip83]

Loudness is when you go to a party, sit near speakers and feel that the music is too loud for you. Same with loudness hyperacusis.

Pain hyperacusis is when you feel that someone is stabbing you with a burning knife in the ears and you have to take medication to ease the pain. And for many of us (like myself), the pain is not just instant pain, but it lasts for days/weeks. I am in 2 weeks of constant pain lately.

Here is another explanation:

Yes, I understand this, but I don't understand how one can claim to have loudness hyperacusis without pain. I think this is just a grade-scale of the same issue, loudness hyperacusis being a less severely developed form of pain hyperacusis.

 

[Taw]

Yes, I understand this, but I don't understand how one can claim to have loudness hyperacusis without pain. I think this is just a grade-scale of the same issue, loudness hyperacusis being a less severely developed form of pain hyperacusis.

I think it's very simple. Loudness hyperacusis is a very high level of discomfort and ear pressure.

For example, my hyperacusis developed because of drums lessons and during the drum beats there was some discomfort and some pressure in the ears, which was because of loudness.

But the pain is a sharpening burning pain, totally different. This sharpening pain started the next day.

 

[Philip83]

I think it's very simple. Loudness hyperacusis is a very high level of discomfort and ear pressure.

For example, my hyperacusis developed because of drums lessons and during the drum beats there was some discomfort and some pressure in the ears, which was because of loudness.

But the pain is a sharpening burning pain, totally different. This sharpening pain started the next day.

Ok, I just feel "high level of discomfort" and "pain", are on a grade scale and not two different symptoms. And my uneducated conclusion/guess would be that it you treat what is called loudness hyperacusis it would surely also effect the pain that comes along with it.

 

[Juan]

Yes, I understand this, but I don't understand how one can claim to have loudness hyperacusis without pain. I think this is just a grade-scale of the same issue, loudness hyperacusis being a less severely developed form of pain hyperacusis.

In pain hyperacusis pain remains for days or weeks after sound stops.

 

[Philip83]

In pain hyperacusis pain remains for days or weeks after sound stops.

I understand. My statement does not contradict this, though.

 

[Taw]

And my uneducated conclusion/guess would be that it you treat what is called loudness hyperacusis it would surely also effect the pain that comes along with it.

I am not expert either, I tried to read a lot about treatments and people which improved and it seems that they are different beasts. The loudness hyperacusis comes mostly because the brain "volume" is too high and can be re-educated via sound therapy or this surgery.

But the pain hyperacusis seems to come from nerve/cochlea/inner hair cells damage. The pain means that something is damaged there. I saw an analogy with the sun burn, when the sun burned your skin (sound trauma for the ears), you don't expose yourself to the sun, not even gradually.

 

[Brian Newman]

I am not expert either, I tried to read a lot about treatments and people which improved and it seems that they are different beasts. The loudness hyperacusis comes mostly because the brain "volume" is too high and can be re-educated via sound therapy or this surgery.

But the pain hyperacusis seems to come from nerve/cochlea/inner hair cells damage. The pain means that something is damaged there. I saw an analogy with the sun burn, when the sun burned your skin (sound trauma for the ears), you don't expose yourself to the sun, not even gradually.

Yeah well said, it's definitely from something else, that's why sound therapy rarely works on noxacusis. But some people have it so severe they get noxacusis from everything, the only thing you can do is gradual noise exposure, like under 50 dB. My noxacusis is set off by dishes, car brakes, and stuff like that. When it's set off I have to sit in silence for a few hours then I turn a fan on or TV at low volume.

I hope noxacusis is resolved from any regenerative medicine.

 

[guenguer]

Jesus. So a 20-30 dB dip post-op? That's a pretty severe hearing loss. I think you should go and do another audiogram, or a few more over the next months, to see how it develops.

Dude, that's mild to moderate. 60-70-80 dB is severe. 90 dB is in the near deaf range.

 

[Philip83]

Dude, that's mild to moderate. 60-70-80 dB is severe. 90 dB is in the near deaf range.

I didn't mean the dB loss got you into the "severe" category, but that it's a pretty substantial drop.

 

[Philip83]

@Philip83, the 30-40 dB hearing loss I reported in my right ear was POST-op as a result of the surgery. The only loss that had shown in previous pre-op Audiograms was all less than 10 dB, which is not considered hearing loss. I posted an updated LDL test 30 days post-op but did not do a hearing test alongside it.

Are you noticing any decline in your hearing in everyday life? And do you know at what frequencies these drops were?

I'm wondering, since I already have mostly more than a 30 dB drop in my 4000 Hz+ frequencies, if this would mean that a post-op audiogram wouldn't cause any changes in my hearing. Or if it would compound into further decline?

 

[GoatSheep]

Pain hyperacusis is when you feel that someone is stabbing you with a burning knife in the ears and you have to take medication to ease the pain.

Medication works to alleviate your pain? I've never had anything help period. What do you take?

 

[ZFire]

Medication works to alleviate your pain? I've never had anything help period. What do you take?

I'm going to guess it's a benzo like Clonazepam.

 

[GoatSheep]

I'm going to guess it's a benzo like Clonazepam.

Ah, yeah I used to take Clonazepam for a little over a year after tinnitus onset. It did actually help extremely with my hyperacusis early on like making me feel like my ears weren't as reactive to noises like silverware clinking. I didn't really have noxacusis like that at first though. It progressed and the pain gradually became entrenched. It never helped with the pain, burning, tingling etc though it did help my tinnitus volume for a long time and also helped me sleep.

 

[GoatSheep]

@Brian Newman, the hearing loss is only in the highest frequencies so not as bad as it seems. And yes, the tinnitus is largely unchanged.

When you say highest frequencies, do you mean on a standard audiogram that only goes up to 8 kHz?

 

[Taw]

I'm going to guess it's a benzo like Clonazepam.

Yep, Clonazepam basically and I take some others.

They help sometimes but sometimes not. After the last setback it does not seem to help at all.

It's frustrating that there is no way to alleviate the pain.

 

[Brian Newman]

I went to Silverstein to get some answers yesterday. Not gonna lie, I was not impressed at all. Yes, his hyperacusis surgery is very helpful, has a good success rate, but that is it.

Do not expect anything else from him.

You would think if this was a hyperacusis specialist, the best in the world, this facility would be a little more accommodating. Loud noise every corner, construction drills going off my entire visit, people slamming doors, the audiologist jamming pieces in my ears for the pressure test. For all their knowledge on hyperacusis, they did not seem to express like they knew a whole lot about it.

If anybody is having trouble with long term hyperacusis, this surgery will most likely help, especially with all the people saying it helped them. All the staff were very nice, along with Silverstein himself, but I still got the normal, I have no idea what's wrong with your ears response. He did offer his surgery and said I could benefit; I said I will give him a call if I decide to do it.

A lot of people do think I have a possible PLF and that's why my symptoms are so strange and confusing, but Silverstein kinda shrugged when I mentioned it. His surgery will actually be a 2 in 1 if I choose to do it which is good. The reinforcement will patch up any holes I have in the round or oval window and will also reinforce the stapes. I think I could greatly benefit from this, but he did not want to do any PLF testing or try to figure out what else is going on. Kind of a bummer. I assumed he would be like Brian, we're gonna figure this out and keep running tests but it was pretty much me getting my expensive hearing test, saying I have perfect hearing, with my LDLs in the 50-60s which I predicted. Then just meeting him to discuss the surgery and that's it.

I think I come off as an intimidating person to ear doctors because 95% of the time they know that I know everything they could possibly already tell me. They say I'm very well informed and it is what it is, to save themselves the time and effort. Maybe I'm being too optimistic thinking the best specialists in the world would maybe try something? Anything?

Just giving out advice to anybody who's interested in going there... Wear earplugs around this whole place lmao. And be aggressive with the audiologist to be careful with your ears, because they will not treat you different. If your LDLs are under 60, you will qualify for this surgery for sure.

I'll add on my review, I was still pretty annoyed by the construction going on, and some of the other stuff but I had a good phone call with Dr. Nyack. He had much more to say. He's much younger and will talk all you want. I give Silverstein props for his discovery and his statues but Dr. Nyack is the man. He answered every question I had. He seemed interested of everything I had to say and gave good long responses. Silverstein kinda did but I got the usual ENT vibe from him. He's still a good doctor but definitely talk to Dr. Nyack.

 

[chinup]

I'll add on my review, I was still pretty annoyed by the construction going on, and some of the other stuff but I had a good phone call with Dr. Nyack. He had much more to say. He's much younger and will talk all you want. I give Silverstein props for his discovery and his statues but Dr. Nyack is the man. He answered every question I had. He seemed interested of everything I had to say and gave good long responses. Silverstein kinda did but I got the usual ENT vibe from him. He's still a good doctor but definitely talk to Dr. Nyack.

By any chance did you ask him if the procedure is reversible? Obviously the lost hearing wouldn't come back but in case some future treatment can't reach the cochlea because of the procedure, lots of folks are wondering if it can be undone.

I've since had yet another hyperacusis setback so I'll be reaching out to Silverstein myself in the next couple months. So tired of living like this. Would like to have the procedure in the spring and just rest all summer.

Hoping by this time next year I can resume my music career to some extent and at least attend quieter shows with hearing protection. Will probably never see loud rock bands again but I'd love to sit in the back of a jazz gig with proper hearing protection.

My burning noxacusis pain had 100% recovered until this most recent setback. The loudness hyperacusis was about 70% back to the way it was before my noise injury in 2019.

Since the setback I have burning noxacusis for a few days after any loud-ish sound, and my threshold for stabbing loudness hyperacusis has reduced by 15-20 percent.

This was definitely the final straw. Most folks recover in a year or so. I'm well past 2.5 years with only fleeting recoveries that always end up with setbacks triggered by sounds *well* under 85 decibels. I'm done with it.

I'll update this thread once I talk to Silverstein. Might be a few months. Good luck to anyone suffering from this horrible condition, eventually we will all be cured; medicine is moving exponentially faster than ever before. Don't lose hope.

 

[Brian Newman]

By any chance did you ask him if the procedure is reversible? Obviously the lost hearing wouldn't come back but in case some future treatment can't reach the cochlea because of the procedure, lots of folks are wondering if it can be undone.

I've since had yet another hyperacusis setback so I'll be reaching out to Silverstein myself in the next couple months. So tired of living like this. Would like to have the procedure in the spring and just rest all summer.

Hoping by this time next year I can resume my music career to some extent and at least attend quieter shows with hearing protection. Will probably never see loud rock bands again but I'd love to sit in the back of a jazz gig with proper hearing protection.

My burning noxacusis pain had 100% recovered until this most recent setback. The loudness hyperacusis was about 70% back to the way it was before my noise injury in 2019.

Since the setback I have burning noxacusis for a few days after any loud-ish sound, and my threshold for stabbing loudness hyperacusis has reduced by 15-20 percent.

This was definitely the final straw. Most folks recover in a year or so. I'm well past 2.5 years with only fleeting recoveries that always end up with setbacks triggered by sounds *well* under 85 decibels. I'm done with it.

I'll update this thread once I talk to Silverstein. Might be a few months. Good luck to anyone suffering from this horrible condition, eventually we will all be cured; medicine is moving exponentially faster than ever before. Don't lose hope.

That's the one thing I did not ask. But I did ask if it can help noxacusis. It's a lower percent chance but it can. It's mostly for loudness hyperacusis unless your noxacusis is middle ear related. That's also why I'm trying to put it off, if it is irreversible I can't get any IT injections and looks like that's how all the drugs will be.

I'm trying to hold off as long as I can. But if you're battling noxacusis, but it recovers, I would just wear earplugs everywhere unless you're already doing that. I seem to have a nasty version that pretty much only gets worse. Don't test it and live the best you can, because whatever I have is the most aggressive version on the planet. My setbacks are from little squeals in a door or a squealing car break from outside my house. Yeah that's how bad it is.

I'm hoping it's middle ear related but there's only one way to find out. I feel your pain. This condition is debilitating. When you call them, bring up the future medicine and is the operation irreversible because I think it is.

Hang tight man, we gotta get through this.

 

[chinup]

That's the one thing I did not ask. But I did ask if it can help noxacusis. It's a lower percent chance but it can. It's mostly for loudness hyperacusis unless your noxacusis is middle ear related. That's also why I'm trying to put it off, if it is irreversible I can't get any IT injections and looks like that's how all the drugs will be.

I'm trying to hold off as long as I can. But if you're battling noxacusis, but it recovers, I would just wear earplugs everywhere unless you're already doing that. I seem to have a nasty version that pretty much only gets worse. Don't test it and live the best you can, because whatever I have is the most aggressive version on the planet. My setbacks are from little squeals in a door or a squealing car break from outside my house. Yeah that's how bad it is.

I'm hoping it's middle ear related but there's only one way to find out. I feel your pain. This condition is debilitating. When you call them, bring up the future medicine and is the operation irreversible because I think it is.

Hang tight man, we gotta get through this.

How long have you had hyperacusis in general? It took a year for the noxacusis to start healing. If you're just a few months in try to give it more time. I was right where you were with the squeals and clinks and stuff. I'm trying to keep from heading back to that level of disability. But I definitely improved with time, both loudness and noxacusis. Setbacks are part of the journey it seems, we just can't let them get out of control.

@Mrkbek hasn't been here since August which is a great sign. Means he's out there living his life. Hopefully that will be us in due time...

 

[Brian Newman]

How long have you had hyperacusis in general? It took a year for the noxacusis to start healing. If you're just a few months in try to give it more time. I was right where you were with the squeals and clinks and stuff. I'm trying to keep from heading back to that level of disability. But I definitely improved with time, both loudness and noxacusis. Setbacks are part of the journey it seems, we just can't let them get out of control.

I got hyperacusis and tinnitus in my right ear from shooting guns. It stayed the same for 5 years until I deadlifted 495 lbs with an earplug in my right ear. Pretty sure I got a fistula or caused a leak of some sort. That gave me bilateral hyperacusis and distortions. Then I got in a car accident in March. That's when the noxacusis started. But it was mild noxacusis up until September. It only got worse, I'm worried because I've never heard of many cases that got worse after 7 months and recovered. Those are the ones that usually don't it seems.

Before my setbacks were nasty squeals and loud noise but now if I hear a chair squeak I get worse. It's getting pretty ridiculous. I haven't been able to work out because of the fistula or leak because it makes it worse. Not exercising is definitely not helping with the pain and my mood.

 

[Taw]

How long have you had hyperacusis in general? It took a year for the noxacusis to start healing. If you're just a few months in try to give it more time. I was right where you were with the squeals and clinks and stuff. I'm trying to keep from heading back to that level of disability. But I definitely improved with time, both loudness and noxacusis. Setbacks are part of the journey it seems, we just can't let them get out of control.

@Mrkbek hasn't been here since August which is a great sign. Means he's out there living his life. Hopefully that will be us in due time...

Consider yourself lucky that your noxacusis improved after a year, mine is 9 months and it got worse.

But it's strange that you get setbacks from sounds under 85 dB. Did you wear protection? Even if it seems healed, you should wear protection above 75-80 dB all the time.

Beware of this surgery, I know a person who did not improve at all from it, it's been 3 weeks I think and no improvement at all, but even worse. Hopefully there will be improvements for that person.

 

[chinup]

Consider yourself lucky that your noxacusis improved after a year, mine is 9 months and it got worse.

But it's strange that you get setbacks from sounds under 85 dB. Did you wear protection? Even if it seems healed, you should wear protection above 75-80 dB all the time.

Beware of this surgery, I know a person who did not improve at all from it, it's been 3 weeks I think and no improvement at all, but even worse. Hopefully there will be improvements for that person.

Yeah I protect my ears religiously outdoors. Never walk out of my house without them in. I'm not sure why I was set back by my phone playing low level rock music but that was definitely the cause, along with listening to an engine revving on my laptop. It's almost like if your LDLs are bad for specific frequencies, even hearing something slightly too loud will set you back, even if it's 50dB.

I'm honestly not sure I've been exposed to a single sound above 80 dB without earplugs since my initial noise injury. Every setback has been from way quieter sounds in a particular frequency. The first major setback was from listening to rock music with headphones at low-mid volume. Nowhere near 85 dB…

Thanks for the tip about the surgery. Please keep me updated on whether that person improves. I have heard of 1-2 other folks whose hyperacusis slightly worsened from it. But also heard from several folks who drastically improved.

 

[Philip83]

@chinup, @Taw - Do you have any further info on the people who worsened? Is there any theories on as to why? What did the Silverstein Institute say about it?

 

[chinup]

@chinup, @Taw - Do you have any further info on the people who worsened? Is there any theories on as to why? What did the Silverstein Institute say about it?

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

Obviously most of the folks who improve leave these sites and never come back, like @Mrkbek. So I'd assume the remaining people are part of the 20% of folks who don't improve. But yeah even a small chance of worsening my hyperacusis is making me pause on this for the time being...

 

[Taw]

@chinup, @Taw - Do you have any further info on the people who worsened? Is there any theories on as to why? What did the Silverstein Institute say about it?

I know a person who did it in Europe and now he/she is in the recovery phase, but did not improve too much in the last couple of weeks, from what I heard he/she is worse than before.

Maybe the Silverstein Institute is better.