Round and Oval Window Reinforcement for the Treatment of Hyperacusis

Every time I hear somebody mention, cutting the auditory nerve to make a person deaf I shudder in disbelief. It will make matters ten times worse because the tinnitus and hyperacusis are generated in the brain, so you will still hear the noise but much worse.
To have the wonderful sense of hearing, I can’t imagine what some people would give to hear that are completely deaf. The answer is to be examined at ENT as so many things can cause tinnitus. Hopefully, a treatment plan can put in place, that will ease some of the distress a person is going through.

 

Yes I World agree with you if we were talking about a young person.

Herre we have someone who has had tinnitus since 1956 and without knowing his exact age I'd say he's in his 70's or even 80's. He has catastrophic tinnitus as is (at least that's my perception) and since he has bad Hyperacusis I'm guessing he can't use anything to mask it and pretty much lives alone in a house in total silence.

His Hyperacusis is pretty much killing him and a prospect of any drug or treatment is at least 5-10 years away. Even if they came up with a solution tomorrow it would take at least 5 years before they can enter human trials and another 5 to market.

How much hope is there? I understand what you are saying but if it was me I'd probably take the chance. You do know that there is a 50% chance of his T resolving after cutting the nerve? And yes there is also a 50% chance of it getting worse.

I don't know. I might be wrong but I think it's better to be deaf then not being able to withstand any noise at all.

I'm not that old so I'm hoping that a solution will come in my lifetime but if I was in my 70's I'd probably think I don't have that much to loose and rather spend the remaining few years I have as deaf rather then having bad H and not being able to be around people.

Hyperacusis should resolve when cutting the nerve as it's a hypersensitivity to sound. And if you don't hear at all then there should be no H.

I'm really, really sorry. I know this is a hard thing and I can never walk in anybody else's shoes but if I just think rationally without emotions this is what comes to mind. I just feel terrible for even suggesting such a thing.

Maybe I'm wrong I don't know. I just feel so bad for Zemeichel. This type of things shouldn't happen to people. It's just so very wrong that we live in a world where this happens to people and there's nothing anybody can do about it. It's just wrong...

 

Tinnitus and hyperacusis are very complex. No-one knows for sure what will happen once the auditory nerve is cut. We do know he will be completely deaf. I still don't agree with such a procedure.

I had severe hyperaucusis which took 2 years to cure. It was so bad, if some talked to me I had to ask them to lower their voice. I can't see any Doctor agreeing to do such a procedure as I think it would be unethical. It all depends where this gentleman lives and the healthcare that's available to him. I'm sorry to hear that he's in such a terrible state and hope he gets some help soon.
Michael

 

The possibility of chronic pain after nerve section is very much there. The body doesn't react too well when nerves get destroyed.

 

Michael,

While you were doing TRT for the hyperacusis, to what degree did you protect yourself with earplugs when you were out?

 

I only wore earplugs in very noisy surroundings. It is not good to wear earplugs if you are sensitive to normal everyday sounds. Only use them in places where noise levels are high or when using machinery, like an electric drill, or saw, hoover, etc. I wore white noise generators for 2 years and used a sound machine at night. My hyperacusis was completely cured and my tinnitus reduced to a very low level. Unfortunately, in 2008, my tinnitus increased again because of noise exposure but my hyperacusis did not return. I had TRT for the second time in 2008 which lasted 2 years.

 

I didn't get any email notifications saying there was 'action ' on this thread so missed all this 'pondering' about me, my age, my desire to perhaps be deaf completely, etc., etc.

Let's clear some of them up - and a good little read of my PROFILE/INFORMATION TAB, will do just that. Like, if everyone had a smattering of decent basic information in their Profiles, life would be a lot simpler on this forum. For me anyway!

~ So, age = 65 not 70's yet.
~ T at age 6 from acoustic trauma. So yes now running 59 years from "initial impact" - and "BOOM!" to another theory that sometimes gets bandied about, that one mainly gets T when stressed, or 'unhappy', or WTF. I can tell you, at age 6 in the middle of Africa I was having a blast!!! Well, save the 'blast' from the thing that blew up next to my ear while "having fun"...Boys will be boys. Tut, tut!
~ That initial T I could hear in a quiet room. Bothered me for a year or so. A QUIET ROOM!...Ho hum. I wish!!!
~ First killer T was at age 30. Loud sounds all day. Demolition shit. Dumb me. Bad result. Now could hear T in any fairly non noisy environment. But within some years had adapted well enough to make even old Nags proud... without expensive noise generators, do-goody therapy, or WTF. Also in retro realized I had H as have pictures of me wearing aircraft carrier grade over-head earmuffs while digging rocky soil on our little farm in Missouri. Hitting a rock with my British "Bulldog", high grade, lifetime steel shovel was a "ding" too loud. However, within 3 - 5 years of second T onset, lived 99.5% normally and had a blast...for 26 years. Oh that bad H dissipated within a year or two...so all this stuff about TRT "treating H" in 2 years is bosh to me. It can go bye-bye on it's own in that time, free of charge.
~ Then the big-arse damage c/o the medical profession. Ototoxic T and H in 2006...do your maths...yep now age 56!!! This is when quality of life really started to get hit. [Yep all in my Profile/Information].
~ Ye Gods, but 6 years later this horrible level of T (could hear it almost anywhere) and H has resolved enough to be able to dance again and have a 75% normal life. I never complained about my T or residual H as just put plugs in if dangerous noise environment...and the "reactivity" was acceptable.

WELL THANK GOODNESS I DID NOT GET MY AUDILE NERVES CUT AFTER ALL!

~ OK, then we get to "Level 4" and yeah, now I'm an oldie of 62, but just before, still dancing Gangnam Style like a 20-bopper. (See video if don't believe me - in Positivity Thread). Then the cruel gods give me "stealth H" and more T volume without me even knowing it! Uggghhh!!! Mega bastard this time. Quality of life near zero and counting.

Three years now and very, very slow resolution of H. The T levels NEVER go down for me once I reach a new "high" (sic). Also H can return "stealth" if time exposure too long (e.g. a speaker-phone phone-call).
Now T is above all other sounds. H not really resolving. Reactivity high.(Remember that quaint time, for 24 years, when could only hear it in a quiet room or when meditating or...Wow!!!!!!!!!!!!!!!!!!)

Would deaf be better with chance of ALSO having T???????? Ummmmmmm: NO WAY!!!!

I can still be around quiet people, normal people, conscious people...It's just they seem to be rather thin on the ground. And isolation is a killer. As @Dana accurately said...it's the isolation and lack of ability to interact with people - and that you get "dropped", as too high maintenance to be around...Ummmm, like people have to actually become "conscious" of the bloody noise they make!!! Yeah dude...such a hardship. Pa-leeeease!

Moral of the story...........
- Don't get T.
- Don't get old you heal slower.
- Don't get T.
- Stable t is not that hard to adapt to. Seriously.
- But still don't get T.
- H and "reactivity" are the life killers. Normal T is pretty darn easy in comparison. Yeah even LOUD.
- Still, don't get T.
- Once you have T, or especially if you have more T events, as you wandle along in life, I think the chances are that you can get louder and louder T over time, and that it takes longer each time to "heal", deal with, whatever.
Final message...
- Don't get T!!!... And get yourself on the 'Round and Oval Window Reinforcement' Trial!

Zimichael

 

I cannot agree more. Instead of a fluctuating T with lows around 0 and highs around 8, i'd prefer a T around 5-6 but stable. Because these ups and downs are the ones getting my attention and you never stop tracking T. Which makes ignoring T almost impossible.

Another thing about fluctuating T is; when it starts being quieter you feel very good, like reborn. But when it starts becoming louder, you feel like shit, drawn into anxiety and all. These are the symptoms of bipolar disorder and on top of T i do not wanna have this.

 

Hey an apology here...re my post #65 above.

Guess I was just somewhat "semi-conscious" when I saw all that stuff about me and reflexively responded, etc. However, most of it is TOTALLY OFF TOPIC...and that is one of my 'complaints' on TT, that stuff goes every-which -way and any serious following of a topic takes forever to wade through all the side tracks, and fluff, and trivia.
So I fell into the same trap. Sorry. Though indeed have been getting on and of f "hammered" (and I don't mean 'drunk' either), so my 'consciousness' has been subject to lapses.

Anyhow, from now on, let's keep this thread about ROUND AND OVAL WINDOW REINFORCEMENT FOR H.

Thanks, Zimichael

 

@Zimichael,

Thank you for your posts on the Silverstein Institute Round and Oval Window Reinforcement Surgery. I have watched the full video on YouTube of the seminar from November 2015 and also have been directly in touch with Dr. Silverstein. Based on reviewing my medical records, he thinks I am a good candidate.

By pure chance, it turns out the first patient in the video is a friend-of-a-friend. I talked with her on the telephone for about an hour regarding the surgery and how severe her hyperacusis was before and afterwards. She definitely feels that her life has been transformed. So, I am considering it but have not pulled the trigger. Am trying to get a sense of the risks, and your posts helped with that.

If anyone would like more information on the experience of patient that I talked with directly, am happy to provide more detail. As has already been mentioned in this thread, the second patient in the video, Carol Chrest, has been very open with sharing her experiences on various online forums. So there are two patients about where additional information on their experience is available.

 

Off topic SORRY but how did yours get better?

 

@Blackbird26 I used white noise generators as part of TRT. Michael

 

Can you point us to this video?

Thanks.

 

Is there any info on how the procedure affects the reactive tinnitus that so many with hyperacusis have?

 

http://www.earsinus.com/inventions-and-procedures-developed-by-herbert-silverstein-m-d/

 

@Blujay , here is the link to the video. Dr. Silverstein says that unfortunately the procedure does not seem to help tinnitus. He does not specifically address reactive tinnitus versus tinnitus generally.

http://www.earsinus.com/inventions-and-procedures-developed-by-herbert-silverstein-m-d/

 

Thanks for the link, Lapidus & Lymebite.

Dr. Silverstein does touch on reactive tinnitus at about 48 minutes into the video, thinking that the procedure might help reactive T for those who have hyperacusis.

After viewing the video, it seems to me that the procedure could help prevent new sound damage, and even worsening of previous sound damage. The doctor describes it as an "inner earplug" that dampens sound vibration to the inner ear.

Excess vibration of the tiny bones could be one explanation as to why some people are more susceptible to inner-ear damage and tinnitus in the first place: there may be way too much transfer of sound waves directly to the hair cells.

And people who have more of a "stiff" sound delivery system, which vibrates less and transfers less sound, may be the people who appear immune to loud sound.

This brings up yet another question: Is sound desensitization for hyperacusis really "desensitizing" the hearing, or rather is it exercising the sound-dampening mechanism into better shape? Or both? These could be clues that might explain why some do better than others with sound therapy, and what is causing setbacks.

Possibly, instead of aiming a wall of sound (like white noise) at a damaged inner ear and brain (for two years, while it's trying to heal), a more effective therapy might be a method that focuses on training and strengthening the mechanical sound-delivery system at the front.

In any event, it appears that Dr. Silverstein has come up with a logical procedure that could revolutionize thinking about hyperacusis.

 

@Blujay, great points. I was thinking the exact same thing about preventing new sound damage. Perhaps this procedure could serve as an interim therapy that both moderates hyperacusis and prevents further damage until more permanent cures such as gene therapy become available a number of years down the road.

 

Those are some very interesting thoughts @Blujay

 

This makes sense. The higher admittance (or compliance? I'm no audiologist) your middle ear has, the more mechanical energy from the air pressure waves are being transfered to the inner ear.

Then, logically, this means that someone with a high middle ear compliance (which can be measured by tympanometry) is more prone to noise damage as you have mentioned in your post.

Can't say that I have heard any audiologists/ENTs say anything about this. They only look if the damn tympanogram peak is centered at 0 and that's that.

 

@lymebite
So, are you going to be a part of this study?

 

@lapidus

I have not decided yet. I did speak with Dr. Silverstein last week. Not much new to report relative to what @Zimichael has already relayed, perhaps a couple minor updates. He said they have now performed the procedure on about 15 patients with several more scheduled. Still all good results so far with no serious or permanent side effects.

Dr. Silverstein said he is scheduled to release the study results on May 21, 2016. I think he will be presenting them at COSM in Chicago (Combined Otolaryngology Spring Meetings). He said they will continue to perform the surgery on additional patients after the study is complete.

So it continues to sound very promising. Are you considering it?

 

Ok, I see. Since there's only supposed to be 20 people in the study, are you worried that you might not have enough time to decide if you will be part of it or not? Since there's only 5 spots left I mean.
I live in Sweden so I can't participate. I was in contact with Dr. Silverstein very early (as soon as Carol posted her story on the H network) though to get info on this. And I've talked about this with audiologists here but they are not the least bit interested in this reserarch. One just laughed at me. I hope that this ongoing study will change that and that this procedure shows success and gets widespread.

All the best of luck to you in whatever decision you might make

 

I asked this question specifically. He said no, I am not under time pressure to be one of the 20 people, because they will continue performing the procedure once the study is complete.

Since it sounds like the patient outcomes continue to go well, hopefully the results to be released in May 2016 will provide a catalyst to other ENT surgeons around the United States and Europe (and the rest of the world) to become interested.

 

Ok. So would that mean that if you have the procedure after the 20 people, your case would not be a part of the study? Would that mean that @Zimichael also could have the procedure done then?

 

Yes, that is my understanding - if I go after the first 20 people, my case would not be included as part of the study. Based on what @Zimichael posted about Dr. Silverstein advising him to wait until later this year, after the study is completed, that he could then have the opportunity to try it, I expect I would be somewhere on the same schedule.

 

Well in Sweden they don't believe anything. My doctor gave me trobalt that helped me, and when we wrote to neurologist he said she should take away trobalt.

Swedes are rather stupid people, giving money to huge number refugees and then radicals burn those house, as ex prime minister of sweden said :"swedes don't see longer then their nose and think all the problems will be solved by the state/government"

I got from University hospital Sahlgrenska, Göteborg certificate they tried hearing aids and now there is nothing more to be tried and that is it. It was supposed to get helped to go to Belgium. I applied for money from state insurance and got negative, there are 5 machines rTMS in sweden, Lund, Göteborg. Stockholm, Ekssjö... BUT DOCTORS DONT GET ENOUGH MONEY for salary SO NO ONE WANT TO WORK WITH THOSE MACHINES.

Why they dont sell it and buy few new houses for refugees i dont know, I just know my condition is worst then ever it went up in mid december, living is meaningless... and Swedish doctors are totally not interest to provide any help, not even psychologist.

Therefore all new that comes we from Sweden will go to take treatment and pay with our own money. so no worries

 

@lapidus ...

With me and this treatment I do not think Silverstein will be interested in reviewing my case for at least year. My condition is just too "extreme" and with trials and early stages of stuff like this, they want to stick to more 'normal' type cases.

I have pretty much taken it off my radar. My only recourse is to "watch it"...as getting a long H spike after normal conversation levels on a speaker-phone (nearly 3 hours) in early November, was another eye-opener on how careful I have to be. This recent increased H has only slowly gone back to maybe 25% above it's prior (shitty!) baseline. But at least it is "calming down" faster than my normal 5-10% per year "cooling off rate" on the true "permanent" increases I have had. *(Have been very protective since November and only slowly easing up on noise exposure on town trips etc. - my history has shown me that "resting" my ears, with open ear canal though, is what helps my H the most).

I guess what I am also saying is that I consider "spikes" in H (or T) to be temporary affairs of a day or two. Maybe at most a week...Longer than that starts to fall into a heavier level of 'damage' zone, in my book.

And indeed, @Blujay has some very valid thoughts about the matter. Good thinking there!

Zimichael

 

I met with an ENT today in the Washington, DC area. One of the things I asked about was Round and Oval Window Reinforcement surgery for hyperacusis. I provided background on Dr. Silverstein's current study. She was familiar with Dr. Silverstein, she said he is very well known.

She was not aware of the Silverstein Institute's current study to evaluate the surgery for effectiveness with hyperacusis. But after reading over the information on Dr. Silverstein's study, she thought the approach had merit, and said she personally performs Round and Oval Window Reinforcement surgery a couple of times every month on patients (for conditions other than hyperacusis). Her suggestion was that I consider doing it locally with her because it would be the same as the Sarasota, Florida procedure, but with much easier logistics - no airplane, no hotel.

A couple other people have commented along these lines, for example @lapidus:

This ENT characterized the risks the same way that Dr. Silverstein did in the YouTube seminar. She said it was a routine, minimally-invasive outpatient procedure with low risk of side effects, especially for ears that are otherwise healthy (except for the hyperacusis).

I am not sure how I will proceed but the prospect of doing it locally without the logistical complications and expense of travel seems worth considering. If she can perform Round and Oval Window Surgery for hyperacusis now where I live, I imagine there may be other ENTs in other cities who potentially could do the same for other people suffering from hyperacusis.

 

@lymebite
Yeah, I guess so. To my understanding, this procedure is very much the same as the one they use to treat Superior Semicircular Canal Dehiscence so ENTs should be familiar with it. There was also that poster on the H network that posted in Carol's thread that he had a similar procedure done over 30 years ago but at that time they did not use skin tissue but some kinda paper. So after a while the paper dissolved or something. But it did work for him while the piece of paper was whole.

It's the poster named "olms" who claims this in this thread if anyone wanna check it out:
http://www.chat-hyperacusis.net/post/hyperacusis-surgery-7084386