Round and Oval Window Reinforcement for the Treatment of Hyperacusis

Because they need to attempt to heal cochlear synaptic damage before trying this surgery. The root is cochlear sensory cell and nerve damage and treatments for that exist but just aren't being studied enough or offered to patients while options like this are. It's crazy. They need to give people the option to try NT-3 and BDNF.

 

Are NT-3 and BDNF treatments that are currently available, or still being developed? All I'm saying, is if there is a surgery currently available, that has minimal negative side effects, it is certainly a huge positive. Other, possibly better treatments should continue to be researched, but for those who have been suffering for a long time, a minimally invasive surgery that on average boosts your LDL's by 10 to 20 dB is a godsend.

I know if my current situation does not improve I would gladly take an extra 15dB. I'd have *almost* normal hearing (certainly much more tolerable).

 

I get where you're coming from and I agree that they obviously should attempt those things too. But you have to take into account that some types of hyperacusis might be entirely middle ear related. A regenerative treatment for the inner ear would do nothing for someone if hypermobile stapes is the culprit for example. The middle ear is unbelievably underreserached when it comes to these things.

 

Not approved for human use yet, however, neither is cocaine and people still find a way to get that.

 

These NT-3 and the like have been around for a while. Before this research some ENTs could inject corticosteroids through the eardrum.

In my opinion, research is actually stalled. I mean, there are some papers coming out now and then, but no progress in decades. Also, the corticosteroid therapy through the eardrum does not really mean a significant improvement from just having corticosteroid pills with a glass of water. The benefits derived from corticosteroids are very limited, if any, and there may be side effects, immediate or in the long run.

So we are really talking about stuff that does not work, specially when it comes to a therapy that is not available for human use, like this NT-3.

Take into account that if there is an effective therapy for tinnitus or hyperacusis, and it means just injecting some drug through the eardrum, all hospitals are going to have it available, it would be on the news.

I think that the underlying causes of hyperacusis are more complex than most of us think, and maybe several areas of the hearing system are involved, including both the inner ear and the middle ear. The dynamic functioning of the middle ear muscles, seeing how they work in real time, maybe through scans or imaging (MRI) is poorly understood.

The general opinion of most ENTs about tinnitus or hyperacusis is that they cannot be cured, or that not much can be done to fix it. Maybe they can give advice but not much more. And there are no drugs to cure this.

So when I see research I am not that excited about promises of a future drug. Because these promises of an effective cure have been around for decades.

 

Also the trend of audiologists and hearing aid companies today is proposing surgeries to implant devices to deliver sound direcly to the middle ear or inner ear. There are several options similar to cochlear implants.

It is a pity that there isn't enough research or successful research to regenerate hair cells. If there was more money for this there would be results, but it is easier to just drill an implant with invasive surgery and charge for it hefty sums of money.

 

The surgery that is the topic of this thread is minimally invasive. It's effect on a large scale of people is unknown, but the small sample size at least seems promising.

 

How long is the window period and where this treatment is provided?

 

1. Don't know how long the window period is.

2.

My assertion is that the statement that the damage cannot be repaired was wrong. It clearly can be. Just because the treatment isn't being provided doesn't mean that the damage cannot be repaired.

 

I am sorry. I was literally asking if the treatment is provided with no regards to the argument. I should have expected that you cannot get it. It's so predictable this answer with our ear issues.

 

You can buy this from lab supply companies. The only thing you have to do is find a doctor willing to mix it in a gel or something and inject it into your ear. I don't see how the laws of physics prevent that from occurring. Is it illegal? Yeah.

 

In my opinion it is quite irresponsible to advise someone else to just mix drugs that are not available for human use and whose results and consequences are unknown, and inject them through the eardrum.

 

I dont really see how a surgery called round and oval window reinforcement is going to fix a demyelinated nerve, or bent or damaged haircells, or a problem that over time involves damage to haircells or the hearing nerve.

 

Unknown to who? You? How do you know they are unknown? Do you know everything?

 

Hospitals are willing to deliver new treatments, effective treatments that have been approved by the administration. If those drugs are so promising, why arent they sold at drugstores or delivered at major hospitals?

Hospitals are not happy to endorse therapies or drugs that do not work or pose risks to human health.

 

It doesn't need to treat those things. In a perfect world we'd know exactly how to fix everything that's wrong, but in cases where we don't know the answers, alleviating symptoms that are crippling people is the next best option.

 

My parents lived in Naples on a gated golf course for years. @Sailboardman is from Sarasota, but I think his SSHL caused him debilitating tinnitus in one ear. Last seen here in 2016.

 

Furthermore, the middle ear could be setting off a domino effect on the inner ear. And when people say hypermobile stapes or hypermobile tensor tympani or hypermobile stapedius or veli palatini, or tense eardrum and such, they don't know if it's creating a hearing loss or a hearing gain. What they do sense kind of vaguely is that the ear just loses its perfect tonicity, you know the one we've been accustomed to for gazillions of billions of years, which, oh naturellement, arrogant urbanite psychologists think they can trump. This is always spoken of when a university doctor decides to write on TTTS every 5 or 10 years or so.

 

Hi, can you give us any information and how you're faring now. There's plenty of people on here who have hyperacusis and want to know what your experience is like, or if you've been keeping posts somewhere about it on another site maybe? Let us know.

 

I think he's a lot more active over at chat-h and has lots of posts about the operation there. His username there is cozo.

 

Pretty sure he's on the hyperacusis surgery success Facebook group, there's a guy named coz there. He said his one ear is pretty good now and he's waiting to do the other ear next year I think.

 

There are some people on Facebook with success stories that had the surgery done recently. One guy reported improvement in his ear from 81 dB LDL to 115 dB LDL! Coz had the surgery done in Europe in his right ear I think. He also reported improvement. Most of the people had surgery in the U.S. at Silverstein Clinic.

Looking at the success ratio in 2016 it's 50/50 but with the improved method last year Silverstein in one of his presentations said the ratio is much better with percentage of 80/20. It seems that something is changed in Round and Oval Window Reinforcement procedure. I think this is true because most of the people who had the surgery with no improvements were in 2016 and 2017. Looking at the numbers who had the surgery last year almost everyone reported improvements.

I asked Dr. Banjee about the procedure and he told me that I need to have had hyperacusis for at least 12 months and that it's too early for me. I have had hyperacusis for 7 months and it seems that right now I'm not a candidate for the procedure.

 

I'm guessing the change here would be the addition of reninforcement of the stapes with the procedure?

 

I don't know exactly. I think there is one video of Silverstein's presentation on Facebook.

I couldn't understand the explanation very well because my English is not so good, there are some specific words that I don't understand

 

Yes that's what it is.

I'm hoping some people from here try out the surgery and have good results. I know it doesn't work for everyone but the small sample size is giving some positive numbers. We just need a bigger sample size now.

 

This thread is amazing and really interesting to me, a hyperacusis victim.

Thanks for everybody's input, I'm following closely.

Daniel

 

Having these results, and even having patients who underwent the surgery with no success but would recommend the surgery, I don't understand why so many doctors in my country and others are so reluctant to try it. I think it is the best treatment so far. It was promising years ago, and since it has been improved, it is quite surprising that more doctors aren't performing it.

 

A newspaper article published 26 July 2019 about the hyperacusis surgery.

Sarasota Doctor Develops Treatment for Hyperacusis

About a week after the surgery, the day Silverstein removed the packing from Ventimiglia’s ear, her boyfriend, Bruce Greenberg, took her to the loudest seafood restaurant in Sarasota. They sat next to the window. Outside, motorcycles rumbled and roared on the Tamiami Trail.

No pain. She cried. Greenberg cried.

“For so long I couldn’t do anything as simple as going out,” said Ventimiglia, who took a photo to remember the experience. “I was looking out over the crowd and not believing that I was there laughing and talking like everyone else. It was surreal; I wasn’t in pain.”

https://www.heraldtribune.com/news/20190726/sarasota-doctor-develops-treatment-for-hyperacusis

 

Is this not amazing news? Is this the cure? Doesn't seem to be making big headlines?

 

Because it is very hit and miss on who it helps. It's not a "cure", however for some it can alleviate the symptoms of whatever hyperacusis really is. Which is of course the next best thing if you're one of the lucky ones it works on.