(Wallace and) Grommets for Hyperacusis

The latest June 2016 update of one of the internet's main reference pages for ear issues, Timothy Hain's Chicago Dizziness and Balance site has a brief mysterious mention of the use of PE tubes for hyperacusis.

It's not the statement you think it is, the one that's been around for years, according to wayback machine, that

He's added the following to it:

and

The only possible reference to PE tubes in H I found was cbBen at chat-h but I'm not sure if he was only referring to his T which he says was a fail.

I'm surprised Hain doesn't mention eustachian tube issues, whether of too much closure (and therefore too much pressure inside) or too open, whatevertf that means, as having something to do with this success, as PE tubes are apparently used for eustachian tube dysfunction, T at least has been related often with eustachian or veli palatini rumbling roaring tinnitus in various places like here or here, in addition to experiences all over the forums about the middle ear's possible involvement in H, some positive, some negative, that mention rumbling and roaring, and the debate about whether roaring is the veli palatini or cochlear hydrops. Obviously Hain isn't on the same level as those mysterious audiologists 'curing' obvious Tullio's (including possible fistula) with pink noise and we don't all have time for interminable speculation on forums.

He's also not a believer in most of the middle ear theories and on that same page attributes H to an absence of middle ear muscles, not to an exaggerated presence due to H or not due to H and due to whatever. And if by 'disarticulation of the ossicular chain' he means Silverstein's reinforcement graft for the oval window, then he doesn't believe in a hypermobile stapes, he just believes that what's really happening is sound is being blocked from entering the nervous system. So it'll be interesting to see how this pans out.

 

Interesting find Japongus. I've never encountered anything about PE tubes for H before.

 

Neither I. Who lives near Chicago, has insurance and so on and can schedule an appointment? Maybe we can crowdsource any questions we have for him.

 

Did you try to email him your questions?

 

No. I'll try.

I doubt he'll say much. Isn't there a lot more to speculate about when after all these years we were told H was due to SNHL and this one seems so much closer to conductive hearing loss or blockage.... and yet he barely just doesn't even give a reason as to why it might be working.

 

@japongus this is an old thread I know, but just wondered if you ever learned more from Dr. Hain about his grommet approach?

 

Hi Japongus,

I had read the opposite, that grommets may cause hyperacusis after they are removed. The brain may be increasing sound when grommets are in and once the eardrum closes after grommet removal the sound does rocket in volume.

Actually, I read accounts by other hyperacusis sufferers that mentioned grommets as a possible cause or contribution to hyperacusis..

 

Sorry haven't been on Tinnitus Talk for ages. Looks like a couple of months after that post I had an exchange with him:

I said:

''Hi Dr Hain,

On your page you introduce the idea of grommets for hyperacusis, saying surprised that they also apply for hyperacusis without perilymph fistula.

Over at the forum Tinnitus Talk and Facebook hyperacusis sufferers group, we're wondering if you could give both more details of the amount of cured hyperacusis patients and what kind of hyperacusis patients were cured. In addition, I think the official hyperacusis questionnaire is wholly inadequate and uninformative, more designed to look into the psychological repercussions of having hyperacusis. So I thought it would be interesting if you could designate the symptoms of hyperacusis that grommets is curing. There's a table on this page:

Pain Thresholds | Hyperacusis Focus

with different sensations that hyperacusis brings, or different kinds of hyperacusis.

I say this with the suspicion that there are different types of hyperacusis. Some that round oval window reinforcement might address. Some that tenotomy or botox might address. Those of misophonia sufferers with no sensations in the ear, just sparks of anger in the brain. And those of people with neuropathic pain, whether or not it's triggered by TTTS.

I was wondering if grommets work for eustachian tube dysfunction and there are some people with both hyperacusis and autophony, then isn't the real use of grommets just the same as that for ETD and not a blockage of the higher frequencies as you state on your page. In addition there are recent reports of sound sensitivity cured through tenotomy by Sismanis before he retired with the classical myoclonus proof on the eardrum or a tympanogram, and another report of a guy getting cured of hyperacusis over at houseclinic dot com with botox inserted through the eustachian tube close to the tensor tympani. Wouldn't this just be the final stake in the widely held myth that the middle ear muscles are protecting H sufferers from greater pain if removed?

So for instance, my sound sensitivity is a lot closer to the descriptions made by Sismanis patients than it is to elderly people with thinning bone getting window reinforcement done. My sensitivity is a lot more geared towards reflex sounds. I have very similar sxs closer to people with ETD or patulous in addition to hyperacusis. I always complain of echoes, thumps, coffee cups setting down on tables and feeling sounds more than the neuropathic pain others complain of as they often feel no physical movement in the ear. Maybe mine is initiated in TTTS, whereas theirs is initiated in a thinning bone or an undetected fistula. Theirs lets in more sound, but mine is just a muscular vibration.

It's a stretch or maybe not a stretch at all.''



He answered:

''Hi Juan - Thanks for the interesting commentary. I realize how terrible hyperacusis can be from many years of patient contact. It is frustrating to have so little to offer in the way of medication.

We have not done very many patients -- just a couple. We would like to do more, but we have not been promoting this idea, as we are pretty cautious. We are waiting for the patients, who are troubled enough to be willing to try something out of the usual "box".

We are using heavy grommets -- made from gold. This greatly increases their mass, compared to the usual PE tubes made of plastic. The driving force with PE/grommet technology has been to produce lighter grommets/tubes made of plastic or light but strong metal. This idea is going in the opposite direction, attempting to exploit the side effect of reduced hearing due to mass loading.

The essence of the idea is that it provides a removable but somewhat permanent way of reducing sound transmission into the inner ear, but putting a weight on the ear drum. It is much less invasive than "reinforcing" the round window. It takes 30 minutes to put in, and it is easily reversed.

Retaining the hole in the grommet does, as you say, make them also somewhat useful for ETD. It may also prevent them from being as easily extruded, as the TM cannot bulge or become retracted with a vent.

I understand and agree with what you are saying about the difference between abnormally high sensitivity to sound (such as occurs in SCD), and being annoyed by sounds (such as a ticking clock, or someone chewing potato chips).

Concerning your comments about the middle muscles, I do have a few patients who have thumps or thrumming noises produced by loud noises, which I presume are related to overly active middle ear muscles such as the TT. One would think that reducing the amount of sound coming into the inner ear would reduce this type of sound sensitivity. I am not at all enthused about botox for TT myoclonus -- it is temporary, and a bit tricky to deliver.

Regarding the hyperacusis questionnaire, I am not at all an expert on H questionnaires -- would like to use some as we explore the use of this new idea. When I have time, I will add one to our evaluation process.''


Quick conclusions I can think of right now:

He seems to have a superficial understanding of at least my particular situation, at least back then, like all of us, except that of course he lumps what I'm saying with that mythical misophonia groups Jastreboff conflated TTTS sufferers with, as I was trying to describe the resonance caused by ticking clocks, and how this resonance doesn't happen when you have rage issues or whatever inducted into you in a learning phase of your childhood like misophonia sufferers do. That's why he says ''ticking clocks and someone chewing potato chips''. This of course isn't Hain's fault, it's fucktard Jastreboff's fault with his clown world parade of gas lighters. Misophonia folks even hate the fact that people chew with their mouths open, and they've been linked to Asperger's if I remember correctly. Nothing to do with vibration tinnitus that resonates and thumps that doesn't even fit into most definitions of TTTS and most don't follow external sound and thump independently, and whose closest symptom correspondent was some Belgian guy on Facebook named Sim Roesems who had exactly my symptom after a cyst operation on his eustachian tube and cured himself lidocaine injections into his trigeminal nerve and reinforcement of the eardrum that is if it wasn't just placebo post-op improvement. I'd be willing to bet that anyone with my vibration-sound-version of TTTS or tinnitus that is actually so loud and in the right place of the ear that it is also the hyperacusis, no one cares about chewing and potato chips and everyone cares about how the ticking clock is making their vibratory tinnitus echo with every tick.

This is to be expected. I once emailed Silverstein's clinic before a seminar they were going to have to try to get them to ask patients if patients got resonance and vibration from sudden sounds. In the video of the seminar they posted online, I noticed how they'd talk about sudden sounds but not catalogue whether it was annoyance or vibration or pain that was happening, and if it was quiet sudden ones entirely out of proportion to and much quieter than loud stable sound that was an issue. Even on the forums I've found a mere handful of folks with my resonance and vibration hyperacusis as pain hyperacusis is so much more common, so it's always going to be tough getting my point across to doctors.

That being said, his page is still up so I would assume he's still getting successes, so maybe it's time to ask him again how he's doing.

 

P.D.

''
Hi

Sorry, previous message meant to say

''In addition there are recent reports of sound sensitivity cured through tenotomy by Sismanis before he retired WITHOUT the classical myoclonus proof on the eardrum or a tympanogram''

On and thanks a lot for introducing grommets and for your very interesting website
''

 

For what I have read on Facebook, here and in other forums, there have been all kinds of outcomes and experiences with grommets, some of them made hyperacusis worse. I I wouldn't recommend that surgery to anyone.

 

Well that depends on what you think your life is worth. I think my life is worth stuff as it is now despite what the vultures have said to me, but I know people for whom their life isn't worth anything and they're willing to be guinea pigs.

I have heard good and bad outcomes from this I agree, but our task isn't to react like this but to track down the patients that get this done and ask them questions that go beyond the retarded hyperacusis questionnaire, so that we can establish what symptoms belong in what treatment. I met one on facebook that was emphatic that it improved him but he was french and not very willing to speak. Hain's patients should be contacted for the same reason, it's not that hard, he should be asking them if they're willing to be contacted on facebook to share their experiences. Hain gets it unlike that prick Jastreboff, who would never admit that ''there are only 155 hyperacusis-titled papers in the literature'', whom Hain elsewhere has described as engaging in therapeutic nihilism.

So as I managed to track down Sim Roesems and he described my rare symptoms of thud and vibration to sudden sound and how he got better with lidocaine bonain solution shots and eardrum reinforcement, and yet I still didn't dare do it, you can imagine the grommets path is even less likely one I'll take.

 

Being cautious is a good approach to this, and also trying to gather as much information about hyperacusis as you can.

I am already a lost case, since I am losing my hearing, maybe I risked it too much.

I can only hope that other people have a better outcome and can improve from hyperacusis and maybe find some therapy, drug or surgery that works for them.

I am not too sure that symptoms from hyperacusis can be cathegorised so easily in closed compartments. Sometimes one experiences thumps, and movements of muscles that are purely mechanical, but if the cause of hyperacusis is loud noise maybe there is some deeper damage to haircells, brain processing or sound or the hearing nerve.

Also, with a very small sample of patients and on top of that few information about them, the origin of their hyperacusis etc is it very hard to get a conclusion or be sure about what to do or which path to follow.

Lately I am asking people about this, so I would like to ask you too, since it's been a while without chatting on these fórums: which changes have you noticed in your hearing over the long run? How are your audiometric tests? Did hyperacusis get better?

 

There's never been a visible loss of hearing on audiometry, but audiometry tests are lame anyways and don't hit the exact frequencies of my two tinnituses. However, the idea that hearing loss and hyperacusis are linked is probably just a myth Jastreboff concocted together with magical thinking.

I've noticed a slight worsening over the years. And most probably a slight intensifying of my vibratory tinnitus, which I feel somewhat more intensely than 1 or 2 years ago. This I think could be because I put the fan with which I cover uneven external sounds with, on more often. Or it could be lack of physical exercise, or more possibly, letting myself go and eating chocolate ice creams and biscuits when that's not very wise as one of the possibilities of the ear injury is that it's somewhere where chocolate makes it worsens, after all vibratory tinnitus has strong links to hydrops without vertigo but no research about it of course.


Loud noise has caused all sorts of symptoms, but if anyone bothered to research it and not just collect TINNET EU grants and academic citations and act like a creep who's ''studied under Jastreboff'', the first thing they'd do is separate symptoms into parts. My symptoms are a minority, I'd say a majority involve pain, I'd even say most don't feel movement in their ears and they only feel pain, and that most have it way harder than me when an ambulance surprises them on the street and they have to put up with neuropathic pain for a few months after that, but that they also have it way easier than me in that they can sit in an apartment and not be bothered by the slightest vibrations of cars or people's footsteps around the building, or birds chirping etc. And they don't have to sit around covering up these uneven sounds with a box fan with a shirt on top, only to be told by some inbred lady that it's all just in ''the limbic system''. Btw, most of Jastreboff's followers are women for the same reason why they fill up other shit professions like psychology, teaching, journalism and politics.

The gold standard of otolaryngology is to not pay attention to an issue if there's no perceptible hearing loss, so when that gold standard is lost, the issue gets downgraded to the shitty practitioners that lack feelings of guilt. When they ship the patients off to shrinks, or hypnotists, or TRT preachers, you just know the study results will be cleaned up through layers and layers of cosmetics.

Separating me and Sim Roesems from pain H folks would be a great first step, but the years pass on and these fuckshits in the profession just don't budge, and everything points to the possibility that they're just getting worse at this than better. Whether it's inner ear issue, or neurological issue, or something misadjusted in the middle ear, that's just speculation that older papers were better at than newer ones. New doctors are cowards, for similar reasons why it was the fact that Silverstein was 80 year old that he considered the possibility that a stapes was to blame for at least a certain type of H. For the same reason why when Sismanis retired no one followed, least of all in Greece where rampant poverty takes doctors to take the safest route, and not much in USA either, where because of lack of interest no one sat down to figure out whether he'd been curing myoclonus or hyperacusis (I think he was mostly curing the former, but others have told me it was also the latter).

Sim claimed he got his symptoms from a cyst in the eustachian tube and/or (I can't remember which) the subsequent operation to remove it.

"1) Stiff (also full) sensation in the right ear;
2) Pressure difference (left ear versus right ear);
3) Increasing pressure when driving, eating and listening to music somewhat louder than average (especially right);
4) Acoustic shock with sudden, unexpected, saturated sound (the shock lasts a fraction of a second and feels like an electrocution in the ear, for example when radio pops on);
5) Hypersensitive to short, specific sounds (especially ' clicking ' sounds such as typing on a keyboard and opening a sodacan). I not only hear these sounds, I can also really feel these sounds. This symptom is disabled by saturation with ambient noise;
6) When I manipulate the Tensor Veli, a loud ' clicking ' noise is generated in the right ear, clearly audible by third parties;
7) Unusually loud ' plopping ' sound, every time I swallow (feels and sounds like when you're in a plane and try to clear the ears);
8) Spontaneous, daily pain in and behind the ears (sometimes up to the jaws);
9) Migraine;
10) When swallowing or yawning, increasing pressure feels like pushing the eardrum (or something else in the ear) outwards;
11) Buzzing (humming) sound, like an engine, inside the ear as a reaction on soft and hard touch of certain zones in the face (closed eye, earshell, neck) or even at slight touch of facial hair;
12) Numb feeling inside the ear (on gentle touch of the right earshell);
13) Short, low tone feedback in response to certain internal body sounds such as swallowing and suction of saliva. Feedback like you tap a microphone which generates reverb in an empty room. Sometimes I experience that reverb as painful;
14) Distorted own voice, usually when I talk louder (humming sound, in sync with own voice, as running throug a defect speaker);
15) Louder sounding of some sounds inside the mouth or other body sounds. I hear my footsteps, heart beat and chewing of crackling food abnormally loud (when eating this sometimes causes a thundering sound);
16) Humming sound accompanied by feeling of spasms in the right ear when other persons speak. It feels like there's a bug inside the ear (especially at high pitched voice and female voices - also depends on the acoustics in the space where we are);
17) Spasms (not related to sound) in the ear not only palpable, but also audible. They make a ' wobbling ' sound (only at night and in the morniing when I'm laying in bed);
18) Pulsityle Tinnitus on the heart beat (sounds a bit like the heart rate of a baby when performing an echography on a pregnant woman). I can also feel the heart beat on the eardrum''


And in just that Facebook post he was more thorough than all the shitty official literature that reported interventions in the middle ear. And if it weren't for paradigm shifters like Silverstein or Roesems we'd just be sitting ducks still with Jastreboff shitting down our mouths getting his fanboi Rob from chat-hyperacusis to censor and preach that ''the ear is just a vessel''.

 

Anyway, saying doctors are cowards is too extreme, saying they're useless bureaucrats would be a better estimate, and that the more pretentious among them who ship the patients off to shrinks and TRT are the creepiest of them all is also accurate. If I were an ear doctor I wouldn't risk my profession when I'd be accused from all fronts of malpractice if things went wrong. Both the patients would swear they're OK if it went wrong and would change their tune after the op, and the other doctors would read a bit of Jastreboff mindslop and conclude that it was malpractice.

 

One of the standard answers of ENTs after listing symptoms like those is that they are not "clinically relevant", that's why they are so obsessed with hearing loss.

Well, now I do have hearing loss and you know what, they say the same, that is a minor loss really (I even have loss in low frequencies!) and just keep on living and try to forget about it.

I am pretty sure that in my case there is damage to the outer hair cells. Sounds at a quiet room are perceived like dimmed, very low, and like people are whispering or talking very low, and I know they are just talking normally, but I hear less.

With earplugs on I hear almost nothing, I dont understand what people say anymore, but still hear and can be damaged by loud sounds.

Also, my symptoms include movements inside the ear, plus all the classical symptoms of pressure, neuropathic pain, etc... all the symptoms of pain hyperacusis. My idea is those "movements" inside the ear are too slow mechanical reactions to prevent hearing damage or the progress of hearing damage, muscles tense up in order to prevent more sound from coming in.

The big change: a couple of years back when that mechanical pressure unravelled and those tense tiny middle ear muscles relaxed, my ears would pop or feel a muscle movement inside, and sounds would come back more or less to normal perception, to baseline. Now, after the mechanical pressure subsides I realise I hear less, things do not come back to baseline anymore, something just changed.

Anyway, I did all I could, visited lots of doctors, did testing, tried different strategies etc

I started to lose hearing when I decided to work more, and go out more, even if I am confined to places that are really quiet. So basically one has to be away from the possibility of loud sound.

There was only one doctor that suggested the possibility of a surgery to cut the muscle attached to the hammer bone I think it was.. but another ENT said it was too risky and not worth it. Anyway, the doctor that suggested this had never done this surgery, so it was kind of scary.

As for grommets, my personal view is that surgery does not fix hyperacusis or tinnitus, and can maybe make them worse.

 

If we had better descriptions of the patients, more people would do the operations and better information would come from that too. This applies to Hain or Silverstein. Silverstein did his more than fair bit with his seminars and presenting the study at an otology conference, but we can do better.

Bear in mind that grommets have popped up for Meniere's disease and for PET treatment. And tenotomy has popped up for Meniere's. And PET and ETD have popped up for Meniere's. And doctors don't know what those conditions are believe it or not. And lately I've been looking at this link I found years ago on a french forum and going ''aha moment'' all over it as I seem to have a more intense version of it and many of the things are similar (even though some are not, or the google translation is shit). I settle down in silence and stop moving and the vibration, that's gotten more intense over the years and more physical, gets more intense. And this baseline vibration is the reason why sudden sounds reverberate for me so much stronger than continual levelled out sounds. All these years trying to give another explanation to this and it could be as simple as this lack of oxygenation to the middle ear. And so humiliating to all the CBT/TRT philistines that assured that the only clinical relevance was that Jastreboff had read a book about the limbic system that had read a book about archeology that stated that neanderthals felt threatened in silence and comfortable when surrounded by alligators and monkeys. Wouldn't be the first time shrinks get the world upside down wouldn't it.

The symptoms aren't clinically relevant my ass, the doctors do exactly like how Silverstein didn't risk doing during his entire career and only dared do it when he was 80 years old, they try to cover their ass. I wonder if recent laws in the last decades have made them more vulnerable to getting sued by patients and so less likely to do risky procedures, and more likely to offload the workload to gaslighters like Jastreboff.

''Research foundations'' pay hundreds of thousands of dollars to folks like Tyler and he also thinks these patient descriptions aren't clinically relevant. Apparently Nagler had to convince him that hyperacusis existed, and a few years later Tyler was getting grants for research.

I haven't had the energy to track the patients down in Facebook, but there's no doubt that it's a start, whether it's for RWR in the Hyperacusis Research group, tenotomy in the TTTS group, or grommets in either group. But anyway all of that is too scary for me, I had enough as it is reading astrid and lib in chat-hyperacusis on the matter.

I remember reading so much about how mechanical middle ear issues could cause fake hearing loss that would appear to be sensorineural, and how all of these conditions were mixed with each other because the middle ear wasn't properly researched. ''Hearing loss'' could just be a reductionist definition of things, to keep things simple and to serve as many patients as possible, and to not speculate and to leave the theorizing to the random academic teacher on a sabbatical.

 

In a way doctors would be irresponsible if they performed surgeries that are not going to fix the underlying problem, the problem that originates hyperacusis or tinnitus.

I guess they say the symptoms are not clinically relevant because there is not an objective way of testing to know where is the origin of the problem, what is going wrong. Also, there is a belief (probably there is truth to it) that loud noise makes hair cells die or get damaged, and also damages the hearing nerve. This could probably be repaired if there was more money (and less religion-related obstacles) to research with stem cells and cell-therapies.

So here we are, stalled at the same point as decades back.

 

I find this interesting, has anyone from here tried this?

 

@japongus, I have almost exactly the same symptoms as you. I can easily stand a louder, constant sound, traffic noise, waterfalls etc, but I'm triggered/electrocuted even with gentle, but sudden, short sounds. No pain, I just "feel" these sounds, they are much louder than they used to be. I have TTTS, extreme hypersensitivity to high-pitched sounds and crystal clear hearing, like I had a "good, protective" filter removed from my ears. It is driving me insane, I came a long way filled with frustration because I recovered several times and relapsed again.

2012 - acoustic shock during a gig. Left ear affected. 4/10 in scale of shit. Recovered after a year to 0/10.

2015 - unknown reason, but probably another acoustic shock, due to longer noise exposure. Left ear affected. 5/10. Recovered after 1,5 year to 2/10.

2020 - a huge blast from an explosion. Both ears affected. Never recovered fully. 8/10 lessened to 5/10 after 2 years. Started to protect my ears most of the time.

End of 2022 - another minor sound trauma. Both ears affected. 10/10 in scale of shittiness. 24/7 ear protection.

I don't want to wait any longer for these things to pass. Even if they do, you can't live like a hermit for the rest of my life. The slow, unnoticeable progress is always ruined by another unpredictable sound incident.

This year I will try either heavy grommets and if this doesn't work - Round and oval window reinforcement, although my surgeon is advising against this latter surgery; he claims that if I don't have Eustachian tube dysfunction I won't benefit from it. I'm going to have an appointment in a couple of weeks, so I'll keep you folks posted.

I'm not scared to be a guinea pig, especially when these surgeries are reversible. Hyperacusis is a nightmare, but I noticed there is not too much progress in surgeries or meds, because folks are just afraid to use these methods.

 

Grommets are typically used to drain fluid or wax trapped inside the ears.

Read extensively about the surgery before going for it. I do not think it is going to fix hyperacusis. Actually, it could make it worse.

 

@Piotr, your historic timeline of noise exposures and subsequent repercussions to your hyperacusis is a warning to us all.

In reading your post from 2015, you say you had never worn earplugs and now you are wearing them 24/7.

Once again, a warning to us all.

Thank you for sharing.