Round and Oval Window Reinforcement for the Treatment of Hyperacusis

[lapidus]

Some news from Hearing Health Foundation regarding this procedure where Xiying Guan, Ph.D has studied the mechanical effects of the round and oval window reinforcement on a deeper and more scientific level than Silverstein has done in his studies. From this, the procedure doesn't look very promising, yet many of Silverstein's patients report a positive outcome. I'm still on the fence regarding this treatment's credibility but I have no reason to not believe the patient testimonials. However, it worries me that supposedly some people have gotten worse from it. This is not reported in any of Silverstein's papers so this is the first time I hear about it from a credible source.

https://hearinghealthfoundation.org/blogs/quantifying-the-effects-of-a-hyperacusis-treatment

Edit: This article is only about the reinforcement of the round and oval windows, so nothing about Silverstein's latest procedure where he reinforces the stapes.

 

[Johan_L]

Hi!

I've had noise induced H (and T, but its not an issue) for a couple of years in one ear that steadily got worse and worse, and three weeks ago all hell broke lose after another acuostic trauma in both ears. Now life is different.

You seem pretty knowledgable in the area. Do you have a good perception/opinion on:

1. Is Silverstein's procedure likely to improve noise induced H, or just SCD? (Yes/No/It's unclear)
2. Why is Silverstein trying a new procedure as mentioned by Lapidus (reinforcing stapes) if the previous ones were succesful?
3.a Based on various sources like journals, FB groups, etc: Do we have a good understanding of how many have seen improvement and how many that were worse off? What happened to those that were worse off?
3.b Does the reversal of the treatment set symptoms back to baseline for those who were worse off?

Bonus question: What is the key arguments that the "jastreboffists" are wrong about TRT for treatment of H?

 

[Johan_L]

Now officially in europe?
https://neconnected.co.uk/uk-first-...ng-hearing-condition-carried-out-in-teesside/

Hopefully we should be able to get more stats on this as the surgery becomes more common

 

[Contrast]

GRRRRRRRRRRR

it has nothing to do with outer hair cells, there type II afferent nerve fibers, audiotory regions of the brain, the the trigeminal nerve or anything thing that is suspected to play a role in hyperacusis just a glorified ear plug that makes tinnitus louder.

I can't wait for the day when Decibel Therapeutics decides to kick hyperacusis's ass with a real groundbreaking therapeutic approach.

 

[lapidus]

GRRRRRRRRRRR

it has nothing to do with outer hair cells, there type II afferent nerve fibers, audiotory regions of the brain, the the trigeminal nerve or anything thing that is suspected to play a role in hyperacusis just a glorified ear plug that makes tinnitus louder.

I can't wait for the day when Decibel Therapeutics decides to kick hyperacusis's ass with a real groundbreaking therapeutic approach.

There are probably some types of DST that are entirely mechanical/middle ear related in nature and has nothing to do with synapses, type II afferent nerves or the auditory regions in the brain, yet they still get the diagnosis "hyperacusis" from an LDL test. And this procedure might help some of those patients just like some patients have been helped by cutting the tensor tympani. Until we know how to actually diagnose and differentiate between the different types of DST, we won't know who will benefit from this procedure and who won't.

 

[JohnAdams]

GRRRRRRRRRRR

it has nothing to do with outer hair cells, there type II afferent nerve fibers, audiotory regions of the brain, the the trigeminal nerve or anything thing that is suspected to play a role in hyperacusis just a glorified ear plug that makes tinnitus louder.

I can't wait for the day when Decibel Therapeutics decides to kick hyperacusis's ass with a real groundbreaking therapeutic approach.

What do you think causes hyperacusis?

 

[Tom Soria]

somone on here said that getting this surgery would make your tinnitus more noticable similar to how when you put ear plugs in, is this right?

 

[Reinier]

Perhaps interesting information?
https://www.sciencedirect.com/science/article/pii/S0196070918309803?dgcid=raven_sd_aip_email

 

[japongus]

That'll fit well next to the theories saying immobility of the stapes was what caused hyperacusis. And next to the papers saying Silverstein surgery increases the sound input into the inner ear, with the other folks at chat-hyperacusis claiming it decreased the sound input. Just so we can all make even more sense.

 

[Contrast]

There are probably some types of DST that are entirely mechanical/middle ear related in nature and has nothing to do with synapses, type II afferent nerves or the auditory regions in the brain, yet they still get the diagnosis "hyperacusis" from an LDL test. And this procedure might help some of those patients just like some patients have been helped by cutting the tensor tympani. Until we know how to actually diagnose and differentiate between the different types of DST, we won't know who will benefit from this procedure and who won't.

you got audiologist and ENT's that don't give a fuck about research, that's why we are still in the stone age.

 

[lapidus]

This hasn't been posted in this thread so I'll post it. It's a video of the procedure and it also shows what hypermobile stapes VS normal stapes looks like.

 

[sakrt]

Anyone from this thread still around to comment, had this or any similar procedures done!?
What happened to @japongus? Where are all the people involved in these procedures?!

 

[lapidus]

Anyone from this thread still around to comment, had this or any similar procedures done!?
What happened to @japongus? Where are all the people involved in these procedures?!

There are some users over at chat-H who had the procedure and who are still active on the board. Here's one recent thread that's active (from which I also saw the video I posted).
http://www.chat-hyperacusis.net/pos...he-uk-half-the-price-than-the-usa-and-9950256

 

[sakrt]

@lapidus - Thank you for sharing. Same time, this is just ridiculous and frustrating because of not knowing.

The info. and procedures that have been going on for awhile around the countries...and the comments from users over at "Chat-H" would be of great use here at TT as well! Don't you agree? Is it possible for you to try entice or encourage any of those users to join TT to help or discuss this topic here? (You seem to be more familiar and involved in forums). This would be greatly appreciated.

 

[Johan_L]

@lapidus - Thank you for sharing. Same time, this is just ridiculous and frustrating because of not knowing.

The info. and procedures that have been going on for awhile around the countries...and the comments from users over at "Chat-H" would be of great use here at TT as well! Don't you agree? Is it possible for you to try entice or encourage any of those users to join TT to help or discuss this topic here? (You seem to be more familiar and involved in forums). This would be greatly appreciated.

Probably best to just roam Chat H by yourself. It's not as active as TT, so doesn't require too much time.

 

[lapidus]

@lapidus - Thank you for sharing. Same time, this is just ridiculous and frustrating because of not knowing.

The info. and procedures that have been going on for awhile around the countries...and the comments from users over at "Chat-H" would be of great use here at TT as well! Don't you agree? Is it possible for you to try entice or encourage any of those users to join TT to help or discuss this topic here? (You seem to be more familiar and involved in forums). This would be greatly appreciated.

The OP in the thread I linked is already a member here but I guess he's not that tech savy or something because he posted about his surgery on here once but in a completely different thread, in an entire different sub forum. Here's his post:
https://www.tinnitustalk.com/thread...snris-maos-tcas-tecas.768/page-20#post-374096
As you can see he seems to be saying here that he got tinnitus from the surgery but over at chat-h he says the surgery didn't make a difference in his tinnitus.

 

[Dean cosnett]

There are some users over at chat-H who had the procedure and who are still active on the board. Here's one recent thread that's active (from which I also saw the video I posted).
http://www.chat-hyperacusis.net/pos...he-uk-half-the-price-than-the-usa-and-9950256

Hi there how can I help ?

 

[Dean cosnett]

Now officially in europe?
https://neconnected.co.uk/uk-first-...ng-hearing-condition-carried-out-in-teesside/

Hopefully we should be able to get more stats on this as the surgery becomes more common

Hi there I'm dean the guy there talking about I've had the opp done in the uk , it works

 

[Contrast]

Ronna Fields at Hyperacusis Sufferers facebook group says Silverstein is working on another hypothesis for H, the mobility of the stapes bone. Said he wrote a paper on it too.

When round window reinforcement was used for dehiscence, it was deemed logical nonsense by the experts in dehiscence. The suspicion was that it helped with only H, not dehiscence, because the oval window's stapes bone was being reinforced with grafts.

Other patients are coming out at Hyperacusis Sufferers saying it's worked, such as Michelle Maertens.

H being in the inner ear is probably nonsense written by the slimeball Jastreboff club, it could be all in the middle ear, either from physical movements of the stapes bone or fictitious perceptions of illusory movements that kinestheologists understand when they talk about proprioception.

I hate Jastreboff just as much as you do, and acknowledge conductive hyperacusis exist, but not going to dismiss the evidence if noise induced pain by type II afferents and lack of myleinth around the AN nerve do cause other forms of hyperacusis in the inner ear, I also believe two central version of hyperacusis existing such as "autism and audiotory processing disorders experiencing abnormal loudness amplification and the possibility that hyperacusis can be like phantom limb pain.

bottom line it's complicated and there are several conditions that we vaguely call hyperacusis

 

[Benjamin Greenberg]

Am curious if anyone who has had this surgery done could let me know how it went for them?

I have incredibly reactive tinnitus and probably mild hyperacusis overall except that even low-moderate volume noise (75 dB+) can cause a long-lasting spike in tinnitus and pain; has been getting increasingly severe over the last 20 years.

I also have increasingly prominent high-frequency hearing loss, and considering that I use masking noises from a sound pillow and speakers behind my head to sleep at night, I'm concerned about the risks of further high frequency hearing loss hearing loss with this procedure, or any other risks it may involve.

Would much appreciate any insight.

With gratitude,
Ben

 

[Juan]

Am curious if anyone who has had this surgery done could let me know how it went for them?

I have incredibly reactive tinnitus and probably mild hyperacusis overall except that even low-moderate volume noise (75 dB+) can cause a long-lasting spike in tinnitus and pain; has been getting increasingly severe over the last 20 years.

I also have increasingly prominent high-frequency hearing loss, and considering that I use masking noises from a sound pillow and speakers behind my head to sleep at night, I'm concerned about the risks of further high frequency hearing loss hearing loss with this procedure, or any other risks it may involve.

Would much appreciate any insight.

With gratitude,
Ben

An ENT once recommended me an operation that involves cutting the muscle attached to the hammer bone. However, another ENT that has followed my hyperacusis for years, said that surgery is technically complex and very experimental, and does not guarantee results, so he said it is better not to go for surgery.

The stapedectomy is carried out more often, but it is not a reversible operation. I think in order to consider surgery related to hearing, which is really fragile, one has to be really confident and sure about the expected results.

Like you, I am losing hearing due to hyperacusis, and hearing loss is progressing faster. But surgery.. I dont really see it, after many years with hyperacusis I havent found any ENT or doctor whom I trust enough to perform surgery. Basically because no doctor can guarantee the results you may expect, in terms of being less bothered by hyperacusis or stopping the hearing loss. Actually the main risks of these surgeries are getting more hearing loss and at the same time pretty bad tinnitus and remains of hyperacusis.

 

[Johan_L]

They are continuing doing this procedure. There is a new FB group that Herbet Silverstein actually joined, though he is not very active.

They seem to be doing this surgery at a rate of at least twice a month.

Some Q&A:
1 How much does the surgery cost: "We accept most insurance company payments". Somebody in the group quoted 8000 dollars.

2: Are there other doctors in the US or International that Dr. S. has taught to do the operation: "This is an on-going development and the procedure has improved in the last two years, we would like the procedure done exactly as we are doing it. We are hoping to give a course to Doctors this September. Most otologists can do the procedure."

 

[lapidus]

From Hyperacusis Research:

"On Thursday, May 16, people can learn about the Silverstein hyperacusis surgery via a lunchtime seminar.

More information about the seminar is on the facebook page of Dr. Herbert Silverstein's Ear Research Foundation. People can watch live on facebook between noon and 1 pm Eastern Time.

The jury is still out on whether or not this surgery can help all hyperacusis patients, but it appears to help some. It does not, however, reduce tinnitus. Additional information can be found at the Silverstein website, earsinus.com."

 

[Juan]

I don't think hyperacusis can be cured or fixed with surgery. The origin of hyperacusis is probably hearing nerve damage or cochlear damage, and that cannot be repaired. Actually there have been studies for decades to try to regenerate hair cells and no therapy is available yet.

 

[JohnAdams]

and that cannot be repaired.

(((WRONG)))

"Round-window delivery of neurotrophin 3 regenerates cochlear synapses after acoustic overexposure"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4842978/

Seriously.

Do.

Research.

Before.

You.

Make.

Declarative.

Statements.

 

[Juan]

(((WRONG)))

"Round-window delivery of neurotrophin 3 regenerates cochlear synapses after acoustic overexposure"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4842978/

Seriously.

Do.

Research.

Before.

You.

Make.

Declarative.

Statements.

And now you go to a hospital to ask for that miraculous treatment and find out the truth about healthcare ;-)

 

[lapidus]

I don't think hyperacusis can be cured or fixed with surgery. The origin of hyperacusis is probably hearing nerve damage or cochlear damage, and that cannot be repaired. Actually there have been studies for decades to try to regenerate hair cells and no therapy is available yet.

Well, some patients who had the operation vouch for it and claim success from it (the results vary of course) so in some cases it obviously is a fix. Maybe not a fix of the root cause but a fix for the symptoms, and sometimes that's good enough for a patient.

However, "hyperacusis" is not a legit diagnosis but rather an umbrella term for at least 3 different (but probably even more) forms of DST's (Decreased Sound Tolerance). Silverstein does two procedures. His second and newest procedure is reinforcement of the stapes since he has noticed (when doing the round and oval window reinforcement in hyperacusis patients) that a lot of people with hyperacusis also have hypermobile stapes. His hypothesis is that some types of "hyperacusis" is either directly caused by hypermobile stapes, or they are an acting culprit in what's causing the pain/intolerance. And it could very much be true for some types of hyperacusis/DST. We simply won't know until these disorders can be properly diagnosed.

 

[MattR]

After having just watched the facebook stream, it looks like Dr. Silverstein has had fairly good results with the updated version of the surgery. 87% of patients have seen good results from it. I know it's not a total fix to the problem, but this seems like pretty exciting news, considering the overall lack of options for treating hyperacusis.

 

[JohnAdams]

This is nonsense. They should attempt treatment with NT-3 and/or BDNF before this.

Why is the tinnitus world controlled by barbaric idiots?

 

[MattR]

This is nonsense. They should attempt treatment with NT-3 and/or BDNF before this.

Why is the tinnitus world controlled by barbaric idiots?

Honest question, why is it nonsense? If a vast majority (though small sample size) of patients have found it successful and would recommend it, why is it a bad thing? In a world with so few options pertaining to the ears, why is a new surgery that has found success a bad thing in any way, shape or form?

It does not prevent other options from continuing to be developed that could further improve symptoms for those suffering. For those who have had hyperacusis for a long time with no improvement, why would you not be willing to attempt the surgery assuming the side effects were minimal? It didn't appear there were any negative effects, but that doesn't mean they don't exist of course.