Am Gonna Try Surgery for Hyperacusis

[Layla23]

@Coffeebean

It's okay! I also digressed haha. I really appreciate your kind words. I know you are just looking out for me which is really really kind considering we're all technically just random people online.

 

[japongus]

TRT is debunked, and chat-hyperacusis is that last place anyone should go for info of anything. When reinforcement of the window came out a few years ago, chat-h mandarins were desperately reaching for reasonings that would absorb both the successes in that procedure while simultaneously not debunk their own psychobabble TRT rationalizations they'd been preaching without proof for decades. The same happened when Hain reported success with grommets, and in fact I got banned for calling them out for their therapeutic nihilism in that. Another one in the TTTS group on facebook got better with lidocaine on a trigeminal nerve affected by a cyst at the eustachian tube and ear patches on tympanic membrane and bonain's solution, and another went on to claim TMJD was the solution to everything including sound traumas after being thoroughly unimpressed by what the TRT types had to say (which of course claimed that TMJD was unlinked from sound trauma). That all this feminine talk about ''sensitivity'' turned into an engineering procedure in the middle ear was too much for them to handle, they were perfectly happy riding their horses into the sunset gaslighting a la head-nurse in One Flew Over The Cuckoo's Nest. However I've done none of these procedures because I don't want to risk it and be a guinea pig for nothing. And because, thanks to TRT, none of these procedures have stats for my particular type of vibratory-sudden hyperacusis, a type of hyperacusis which has persistently been hidden by the TRT goon brigade because it would reduce their success numbers, as they'd be revealed to have been pumping up their numbers by applying steady sound to sudden-sound hyperacusics in masse, something the patients were already doing on their own by using fans and other contraptions to drown out external uneven sound. Also, people have gotten better AND worse from these procedures, and the science is shaky on all of them, but even getting worse from a procedure proves TRT wrong as its proponents have always downgraded the role the actual ear has to being ''a mere vessel''.

Anyway, whatever you decide to do, pls report back to us, and may the flying octopus spaghetti monster of the deep ocean be with you.

 

[Marc22]

To Layla23:

I am really sorry to hear about your situation.

You write that you got advice not to over-protect and then got hit with an alarm that made you worse. Even if you had had earplugs in or even the best earmuffs, you still would have been affected by the alarm, I beleive. No earplug can counter the effect of an alarm, so please do not blame the advice you got. It is just bad luck. I beleive your ears were already in a very weakened state for what happenned to you to happen.

My earplugs only make a tiny bit of difference, as in the slight drome of an air conditionner in a closed room which will decrease in my own other room with earplugs.

For years I thought that those warnings about over -protection were bunk. But now I see a little thruth to it. For example, I need to put ear muffs in certain situations like driving in a car. But if I put in earplugs also, I get WORSE after the ride, always. But with just earmuffs I am OK, no worse, no better.Of course, that is within certain low limits of sound.. If the airbag went off, I would be totally destroyed, protection or no protection.If an alarm went off ,I would be affected immediately for a while, and then I would recover, and it has happenned often. I am in a library right now, and an alarm to the back door goes off often because some users think they can use the door to get out, which they cannot, because it is clearly markeas an emergency exit.

Also, I cannot understand japongus' rant against TRT. So many people have been helped. Are they all lying? See, for instance, the remarkable recovery by someone who wrote the book ''Tortured by Sound.

Marco

 

[Johan_L]

@japongus , What's the theory of "sudden sound" H? That some H is more sensitive to sudden sounds? What other types exist and is there any relation to what caused H?

@Layla23 How is your reasoning on choosing the Cain vs Silverstein Institute type surgeries?

 

[Layla23]

Honestly the reasoning was out of pure logistics. I can barely leave my house because of my H....I don't know how I'd make it all the way down to Florida. Whereas with the permanent ear plug surgery...that's in my same city. Plus I liked that they can be removed surgically if they don't work (although now I don't think that'd be a good idea anyway due to possible excessive damage from inflammation from multiple surgeries).

After doing more research I think I would opt for the one in Florida but again the logistics would be difficult. @Johan_L

Regardless I still have a few more months before I make a decision. I'm waiting for my recent spike to settle first.

 

[japongus]

@japongus , What's the theory of "sudden sound" H? That some H is more sensitive to sudden sounds? What other types exist and is there any relation to what caused H?

Sudden sound hyperacusis is when you're bothered overwhelmingly by the sudden sound, the part where the sound starts, instead of by the levelled out sound. So by the tapping on a table instead of by the box fan at your feet. In the last Silverstein seminar, many of the patients comment having had sudden sound H disproportionate to the discomfort caused by levelled out sound H. But they don't seem to have it to the extreme that I do, and many if not all, don't even feel a vibration in their but feel discomfort elsewhere in their body. It's a type of hyperacusis that is gaslighted by the TRT crew, as all they've come up with is their ''4 types of hyperacusis wisdom''. The theory of sudden sound H is anywhere from middle ear issues to cochlear damage of the membranes to something similar to recruitment. If mainstream otology can't even agree on industrial conditions that they've been treating for centuries, they're orders of magnitude worse on this subject, where its star researchers denied pain hyperacusis until a five years ago when they gave themselves a prize for ''discovering'' it, where 2 decades ago the largest tinnitus clinic in the USA didn't think T and H were related but then admitted it was because they didn't test for H

 

[Johan_L]

Thanks. Will reflect on this, still trying to figure out how my H works. I feel sudden sounds are worse, but it might just be because I am able to react and protect my ears better during prolonged sounds.

This makes me think about the LDL-test. I think the fact that it went from total silence to 30 dB made me it worse than if I had heard the BEEP while e.g. listening to a conversation. Is there any agreement on whether the -change- in sound level impacts H (going from 0db to 30db, or 20 db to 50db), or is it just about a certain threshold?

 

[japongus]

Thanks. Will reflect on this, still trying to figure out how my H works. I feel sudden sounds are worse, but it might just be because I am able to react and protect my ears better during prolonged sounds.

This makes me think about the LDL-test. I think the fact that it went from total silence to 30 dB made me it worse than if I had heard the BEEP while e.g. listening to a conversation. Is there any agreement on whether the -change- in sound level impacts H (going from 0db to 30db, or 20 db to 50db), or is it just about a certain threshold?

This is one of the main but many reasons why the LDL test is such a sham. It's delivered by huckstersupremeJastreboff-namedropping bureaucratic philistines, and their only concept is loudness. They never inserted beeps instead of levelled out sound in there to test sudden H, they inserted beeps out of convenience and inertia, and when grilled for info they always show they haven't the slightest idea what sudden sound H is. They think they're due attention because they hop onto the latest conference circuit where they flaunt their retarded and reductionist H questionnaires, when they're so laughable and so morally degradated that with all the patient access they haven't even made the effort to make statistics of exactly what type of ''discomfort'' each patient has.

 

[dingaling]

This is one of the main but many reasons why the LDL test is such a sham. It's delivered by huckstersupremeJastreboff-namedropping bureaucratic philistines, and their only concept is loudness. They never inserted beeps instead of levelled out sound in there to test sudden H, they inserted beeps out of convenience and inertia, and when grilled for info they always show they haven't the slightest idea what sudden sound H is. They think they're due attention because they hop onto the latest conference circuit where they flaunt their retarded and reductionist H questionnaires, when they're so laughable and so morally degradated that with all the patient access they haven't even made the effort to make statistics of exactly what type of ''discomfort'' each patient has.

Derogatory statements like these should be deleted IMHO

A good audiologist would not even consider performing an LDL test on a hyperacusis patient

 

[japongus]

Derogatory statements like these should be deleted IMHO

A good audiologist would not even consider performing an LDL test on a hyperacusis patient

LOL

You must be new here.

These two sentences are as funny as a fat girl trying to give an erection.

I'm far more knowledgeable about hyperacusis than the average moronic audiologist.

Things are so terrible in the hyperacusis research, that when I took on chat-h lambasting them for not having differentiated the types of hyperacusis, I became one of the planet's top researchers on hyperacusis.

 

[Juan]

Honestly the reasoning was out of pure logistics. I can barely leave my house because of my H....I don't know how I'd make it all the way down to Florida. Whereas with the permanent ear plug surgery...that's in my same city. Plus I liked that they can be removed surgically if they don't work (although now I don't think that'd be a good idea anyway due to possible excessive damage from inflammation from multiple surgeries).

After doing more research I think I would opt for the one in Florida but again the logistics would be difficult. @Johan_L

Regardless I still have a few more months before I make a decision. I'm waiting for my recent spike to settle first.

Hi Layla,

I used to have extreme H, very severe, and over time I have lost hearing due to it, but have recovered spaces of my life that were gone for me before.

If I were you, I wouldnt go for that surgery.

The hearing takes a very long time to evolve and change. As of today, nobody fully understands H and if you go to old ENTs, people who have been working for decades with patients with all sorts of hearing problems at big hospitals, they are going to be very conservative about suggesting surgeries to try to fix H. The outcome of any surgery is very unpredictable and if you know very well an ENT that you can trust and can talk to that doctor frankly, I dont think any surgery is going to be recommended.

Actually some surgeries may cause H or make it worse.

Whatever you finally decide, good luck!

 

[dingaling]

LOL

You must be new here.

These two sentences are as funny as a fat girl trying to give an erection.

I'm far more knowledgeable about hyperacusis than the average moronic audiologist.

Things are so terrible in the hyperacusis research, that when I took on chat-h lambasting them for not having differentiated the types of hyperacusis, I became one of the planet's top researchers on hyperacusis.

Well, if you consider yourself an expert - what papers have you written/published and where will I find them ?

I would be fascinated to read and learn from your expertise

 

[japongus]

Well, if you consider yourself an expert - what papers have you written/published and where will I find them ?

I would be fascinated to read and learn from your expertise

I humiliated chat-hyperacusis a few years ago. I was basically Mohammad Ali vs the TRT sleazoids. There were many ways I did it, but two ways stood out. I noticed that for all their publications in academic papers, the official hyperacusis questionnaire, promoted by TRT BS vendors, didn't seek to differentiate types of hyperacusis, leaving us with shitty research in their attempt at hiding their shit results with layers of therapeutic nihilism. And in so doing, I managed to get the local crybully admin, Rob, to claim that what I had wasn't hyperacusis, when it clearly is a type of vibratory hyperacusis, leaving him knocked out cold. I also was ruthless on them for having gaslit Astrid and her tenotomies in the way they did, and not having looked into exactly what types of hyperacusis were addressed by tenotomy, for the same reason, because any other method disproves the psychobabble mechanisms of TRT, as we saw more recently there when someone mentioned Silverstein's reinforcement or Hain's grommets. And for that I was banned.

Besides, why would you want to get published when it's just been 15 or 20 years since, as I pointed out above, ''the largest tinnitus clinic in the USA started to test for H and up until then didn't think T and H were linked''. It would be like getting published in Cosmopolitan.

 

[Layla23]

I wanted to give a quick update. I don't think the surgery would be a good fit for me anymore because I am too prone to inflammation as it turns out.... My ears tend to swell when anything touches them like (q tips). Which aggravates T.....So surgery would definitely cause swelling.

I think my best bet at this time is slow noise exposure, time, and I am going to explore stem cell therapy instead. Supposedly stem cells also help with inflammation so who knows.

I'll make a new thread about that. But i hope this thread helped someone out. Especially in the Chicago area.

 

[yonkapin]

Please don't do any surgery. I had severe hyperacusis from 2013 through to the beginning or 2015 and then continued from there to make a complete recovery. My hyperacusis is completely gone and my sound sensitivity is back to normal. My tinnitus is also much more calm.

Peep my thread here if you haven't: https://www.tinnitustalk.com/thread...cusis-and-chronic-ear-pain.14404/#post-172429

I didn't use TRT, was offered it early on from a dodgy audiologist for $5,000AUD which I thought was ridiculous. I just systematically exposed myself to more and more noise as I felt more comfortable and eventually was able to readjust my hearing threshold back to normal. Positive mindset, exercise, and time make a massive difference when it comes to hyperacusis.

 

[Marko Nakovski]

@Layla23 What exactly do you feel with sudden sound hyperacusis? I have some similar symptoms like yours. If I put the pain aside when I hear some sounds, especially high frequency sounds in the last few weeks my body gets stressed out from sudden noises. These noises don't need to be loud or be sounds that are painful to me, sometimes even sounds like notifications from Facebook on my laptop or some people's voices outside my flat are freaking me out ... My ears don't hurt from these sounds but they are stressing me instantly at the same time when I hear them. It's so weird...

 

[JohnAdams]

Hey everyone,

I came across a surgery for hyperacusis. It's a semi permanent (super expensive) ear plug that completely blocks high frequency sounds. Supposedly if I change my mind I can have surgery again and have them removed.

My hyperacusis gets worse with high frequency sounds so I feel like this could help me at least stop the deterioration of my ears.

Yes I know many of you are advocates of TRT (and I think TRT is very good at reminding us to keep up our tolerance of noises in general—-I agree this is crucial) but I don't believe I should keep exposing myself to certain high frequency noises (such as found in pink noise) since these continue to ruin my ears.

That is the case at least for MY hyperacusis. If TRT worked for you, I'm genuinely happy for you. I'm just talking to the people who's hyperacusis was not helped by TRT.

There is a study by Harvard that was recently done that shows that noises that shouldn't harm the rat test subjects (well below 80 decibels)....actually do continue to kill their hair cells once they have hyperacusis. TRT says the complete opposite. That certain noise decibels can't hurt us. I hypothesize that TRT is half right. Our H can and will become worse if we overprotect from all noises. But I think high frequency noises can harm us. That's just my theory though.

The doctor has not agreed to the surgery yet but I thought I would share my progress in fighting for the surgery and so forth.


All the best,
Layla

when do you plan on doing this?

 

[Benjamin Greenberg]

Does anyone know of someone who has actually tried this surgery?

I have pretty extreme sound-exacerbated tinnitus and am losing functionality in my life and career. Have had to cut myself out of most if not all social activity. And, I just learned that I may need some major dental work done, which I know from experience will further debilitate and disable me.

I've been dealing with this for 20 years now. Will try anything if there's a chance it will help.

 

[shasta0863]

My hyperacusis has been improving ever since I started taking nicotinamide riboside. I can't say for certain that it is what has helped, but I was getting nowhere prior to that (for a long time) and it was a new supplement I had just started. Could be a total coincidence and just natural improvement. But I have not been doing any sound therapy/TRT or even listening pink/white noise at all. I feel this stuff has somehow been calming down my nervous system (including auditory system), so it's not on high alert.

Today I was walking around the park in the city near where I work, where not that many weeks ago I had felt under siege by sound. And things sounded ok. Driving in traffic with no ear protection also ok (NC headphones at the ready in the seat next to me). Walking around a shopping centre for a little while - fine. I can listen to music through my computer speaker and phone speaker at a safe level. People, kids, things making sudden unexpected loudish noises - no T reactiveness - although I still don't like it.

I do get tensor tympani cramping, but that's a different problem albeit also ear related. The main thing is my sound tolerance and H are getting better, which has been helping my T. As the weeks go by I find my ears have been getting less and less of that pain from when they've been exposed too much sound.

H, tensor tensing and reactiveness seems very familiar to me. Could you elaborate on your reactiveness you spoke of? I'm battling a shift in T I think is H related not typical T from noise. It's changed into a reactive/winding up where noises entering the ear make the T erratic like its misfiring and competes with the sound to go over the noise, like A.C ect..

Stranger, if noise enters the opposite decent ear, it skyrockets the other ear too. Like it's being triggered from entering the other ear. This does not seem normal to me, I've had regular typical T for years.

I think this might be an H issue. I spent many years in low noise environment and this all started after I was exposed to a smoke detector going off in my room for a few seconds, then starting work in a decently noisy environment where people talking loud, laughing or general noises were bothering my ear and seemed way louder than they were.
I'm starting to think maybe I've sent my H into meltdown, which is in turn causing this T shift.

 

[Gman]

H, tensor tensing and reactiveness seems very familiar to me. Could you elaborate on your reactiveness you spoke of? I'm battling a shift in T I think is H related not typical T from noise. It's changed into a reactive/winding up where noises entering the ear make the T erratic like its misfiring and competes with the sound to go over the noise, like A.C ect..

Stranger, if noise enters the opposite decent ear, it skyrockets the other ear too. Like it's being triggered from entering the other ear. This does not seem normal to me, I've had regular typical T for years.

I think this might be an H issue. I spent many years in low noise environment and this all started after I was exposed to a smoke detector going off in my room for a few seconds, then starting work in a decently noisy environment where people talking loud, laughing or general noises were bothering my ear and seemed way louder than they were.
I'm starting to think maybe I've sent my H into meltdown, which is in turn causing this T shift.

Sorry to hear about your incident. It's unfortunate to know you were able to be in a low noise environment for years and then get worse from a few secs of loud noise. I would have thought that your ears would heal somewhat over the years and be able to handle that.

Reactiveness is a controversial topic here, but it's real whether it's part of H or not. There are many threads on it.

Some days mine will do like yours and compete with sounds, riding over the top. Other days it's stable no matter what noises I'm exposed to (although always trying to stay away from loud noise).

 

[Lane]

Reactiveness is a controversial topic here

Unnecessarily so--IMHO. It seems clear that people have symptoms that they refer to as reactive tinnitus (I do), but some object to that not being a scientific term, or something like that. I'm not sure why anybody would even care whether it's a scientific term or not.