Am Gonna Try Surgery for Hyperacusis

[Layla23]

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

 

[lymebite]

I believe that @japongus has posted before about this procedure for hyperacusis from Dr. Timothy Hain. He has not done it but has been trying to find out more info.

https://www.tinnitustalk.com/threads/wallace-and-grommets-for-hyperacusis.16360/

 

[Layla23]

Thank you!! I had not seen that.

 

[kelpiemsp]

Have you tried a slow exposure therapy? I struggled with hyperacusis for a few months before I ultimately got over it. I slowly exposed myself to the shower in increasing length of time. Any more than a minute would hurt too much. I would go a minute longer every few days until I was up to 30 minutes. It greatly helped my H.

 

[Lex]

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.

Please post the link to this study. Thanks.

 

[Layla23]

Sorry it wasn't Harvard. It was the university of Calgary in Canada. This isn't the actual study but this is where I found the information. The author of this article has hyperacusis herself and so does her husband. She has done a lot of research on the topic.

I'm sure you could google the scholarly article though somehow. The professor's name is in the article somewhere.

@Lex

https://www.google.com/amp/s/www.bu...ise-kills-when-everyday-sound-becomes-torture

 

[Lane]

I thought I would share my progress in fighting for the surgery and so forth.

Hi @Layla23,

I'll be most interested in following your progress. I watched a video a few months ago which piqued my interest in a new kind of minimally invasive hyperacusis surgery. I was wondering if what's described in the following video is what you have in mind. Good luck with everything, and do please keep us posted! -- All the Best!

Minimally Invasive Surgery For Hyperacusis - January 27, 2016

 

[Layla23]

I have been doing that with the TV but then a sudden noise randomly comes on and ruins my progress. I like the idea of using the shower instead. It would be a sound that is more consistent. Also it's more of a natural sound ...(vs distorted frequencies from a tv). @kelpiemsp

Thank you for the advice!!! I will gladly take any input.

 

[Layla23]

Thank you for the link @Lane ! I'll watch it tomorrow. There weren't any subtitles and I've already watched too much tv on my phone today (it surprisingly irritates my ears).

That gives me more hope. In the event my dr doesn't allow me to have the procedure... I feel like I have more options now.

Long story short I am in the process of trying to plead my case to the dr so he does the surgery on me. He normally only sees patients that have dizziness along with H. But the surgery is solely to help H (not dizziness)...and based off of the description of the procedure....I don't see why it wouldn't help someone like me (H from multiple noise traumas).

I'll keep everyone updated. But I'm determined to have it done even if I have to find the dr myself. It seems like it helped some people with their H.

 

[HighleyTall]

Good luck!

 

[Contrast]

The current hypothesis is that painful hyperacusis is caused by damaged outer hair cells leak adrenosoine molocules triggering a small minority of audiotory nerve cells that act as pain receptors. It's confirmed the nerve cells act as pain receptors but OHC damage as a trigger is still in hypothesis. There may be more neurological aspects to hyperacusis at play.

 

[Gman]

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.

 

[HighleyTall]

@Layla23 the study does not state that hair cells are destroyed, they detected changes in the tonotopic map of cats. They also don't know if this is valid for humans.

Reversible long-term changes in auditory processing in mature auditory cortex in the absence of hearing loss induced by passive moderate level sound exposure.

 

[Layla23]

@HighleyTall I also saw that study but that's not the one I had in mind. I have emailed the professor for the full study that was quoted in the article (with the link above).


I have probably read 300 studies/articles in the last 12 months. I remember distinctly reading 2 articles where it was hypothesized that doctors should be careful to claim that "normal" decibel levels can't harm the hair cells of people with hyperacusis because that is not what they have found in their rat studies. I am not certain of all of the details ...which is why I'm working hard to find the studies. Because I do realize it is important to distinguish the proportion of each type of hair cells damage they were referring to ("inflammation of hair cells" vs " complete death" of hair cells). Inflammation of hair cells can recover vs the latter obviously cannot.

Either way, I am not proposing people should avoid noise or TRT. That is not what I have been doing. But high frequencies are what damaged me and avoiding some of those harsher high frequency sounds have already helped me tremendously—and I don't intend to ever expose myself to those ever again as they always lead to setbacks for me (which so far have been permanent).

And I should make the distinction that it is my hypothesis that maybe that's why the people who recover from TRT....don't nearly recover as much ldl's when it comes to higher frequency sounds. And maybe that's why they relapse. And then recover again after another round of TRT but not as much as the first time. Maybe it's because they are unknowingly harming themselves with the frequencies that initially gave them tinnitus or hyperacusis (high frequencies). I am not stating any of that as fact. I have not read that anywhere. Just a theory that I'm willing to go under surgery for. I'll let you guys know how it goes.

And I might add that if your H and T is not severe this might not apply to you. My boyfriend has T but this surgery is something he should never ever consider—his T is just not that bad. My T and H though is a whole other level.

 

[Bobby B]

for H due to noise trauma, Light therapy helped me a lot and almost cured me..
and protecting ears from noise to help with healing which can take years!
give it 2-3 years it will improve.
Do not do TRT just yet..too early, and risky to get setbacks

TRT is good if you hve anxiety caused H and T, not noise trauma

Also if you have T a permanent plug cutting the highs will make T seem very loud..

Just make good use of plugs and earmuffs for 2-3 more years and do LT twice a week and the H will get much better

Also sleeping with sound enrichment all night long is good, especially high frequencies crickets like the "summer night" sound from MyNoise app on an Iphone speaker phone, close to bed, not too loud of course

 

[dingaling]

@Layla23

Have you looked at all of the information including the risks should the operation go wrong?

 

[Layla23]

@dingaling

There's risk of blood clotting from the IV anesthesia (actually happened to me when I was 20 during a dental procedure), there is risk of having complications from the anesthesia itself, risk of infection in the ears (which would be detrimental to my H), risk of making my T worse with the antibiotics given after surgery, the surgeon can also accidentally botch my ear drum during placement, they can widen my Eustachian tube too much causing my voice to permanently echo in my head, can aggravate my T or H due to inflammation, and numerous other possible complications. I imagine speech would be distorted after...especially with higher pitched female voices.

My main concern is....if I would later develop global sensitivity to higher frequency sounds... I won't be able to get a definitive answer since H is very unpredictable...but I do want more information on that specifically from the doctor.


I'll continually update.

This surgery in my mind... should be a last resort. Like truly last resort.

Some people apparently had success with the surgery so I'm hoping someone will see this and post about their experience. Under HIPPA I can't track down people who have had it and I haven't really found anyone talking about it on any forum... I guess we will see with time I guess.

 

[dingaling]

@Layla23

Also...you will need to plug your ears whenever you wash your hair/have a bath or shower etc so that water doesn't get into your ears - have you considered this? If the PE tube is weighted (i.e. heavier than a standard PE tube), can the eardrum hold up the extra weight? There's also the chance of ossicular damage. And yes, there may be infection/pus and possibly deterioration of your hearing (which can then worsen tinnitus)

You are young and don't want to mess up your ears for the rest of your life

The lack of people talking about their success stories is worrying

 

[Layla23]

There is no doubt that there are things I need to explore with the surgery before going through with it.

However, I wouldn't say "people not talking about it" is a red flag.

It technically took me months just to figure out I wasn't the only one with severe T and H because I never found anything about it online. The internet told me T can only last 6 months.....funny to think about now lol. Then I found this site but then I couldn't find any T or H clinicians. Many months later I found H clinicians by contacting the news reporters of certain H articles I had read on online and so forth.

I think in general H or T requires a lot of digging. So I'm not too worried about people not talking about the surgery.
But I definitely agree with you I need to ask more questions. You also brought up some very good points. @dingaling


If anyone is interested in me asking some questions on their behalf when I see the dr let me know. I'll post the answers.

 

[Coffeebean]

@HighleyTall
And I should make the distinction that it is my hypothesis that maybe that's why the people who recover from TRT....don't nearly recover as much ldl's when it comes to higher frequency sounds. And maybe that's why they relapse. And then recover again after another round of TRT but not as much as the first time. Maybe it's because they are unknowingly harming themselves with the frequencies that initially gave them tinnitus or hyperacusis (high frequencies). I am not stating any of that as fact. I have not read that anywhere. Just a theory that I'm willing to go under surgery for. I'll let you guys know how it goes.

It should also be noted that in many of the studies done wrt TRT, the broadband sound had a relatively low cut-off frequency (due in part to limitations of the noise generators, and also simply because the clinicians chose a certain noise at the time without too much high frequencies). It's therefor also possible that the high frequencies improved less because the patients were not really exposed to them that much.

In addition, high frequencies are, as you correctly indicate, usually the most bothersome for hyperacusis patients and when tolerances improve the high frequencies are usually the last to improve. Several TRT and other sound-desensitization studies only run for a short time (e.g. a year), and only include a general statement that patients continued to improve after completion of the study without providing details in terms of LDLs. This does not mean however that high frequencies cannot be treated via desensitization. It's just that it requires more patience and the right type of broadband noise. I think current TRT treatment, and some of the related studies, do not sufficiently take this into account.

It should be noted also that in the event of a relapse/set-back, most people actually progress faster through the treatment.

I think it is interesting that you have read a lot of studies and articles about hyperacusis, but seem to want to base your decision to have the surgery on your own hypothesis only. I do not mean this in an offensive way, if you decide the surgery is worth it and want to go through with it, it is your choice alone and I am rooting for you that it will give you some relief. But it's important to consider these things carefully. If out of 300 articles, only 2 of them hypothesize - on the basis of rat models - that people with H are in fact more susceptible to damaging their hair cells, I'm not sure if I would focus on those 2 rather than the 298 others (or the selection thereof that confirms the risk is not higher, which I assume you will have come across in at least 20+ studies, as I have). Of course, it is always wise to be careful with loud noises as you have a hearing condition, nobody can deny that, but still it's important to make a distinction between sounds that can trigger your H, and sounds that are actually damaging.

I believe some people over at chat-hyperacusis have has such a surgery by the silverstein institute, you can consider getting in touch with them to discuss their experiences. Whatever you chose I hope you consider it carefully and I hope it will help you.

 

[Autumnly]

The lack of people talking about their success stories is worrying

Not sure if it's this surgery but if is there are people talking about it, it's just not that known and most people with hyperacusis are told that it will eventually get better on its own.

Edit: obviously we can't know for sure whether those people are saying the truth or not.

Most people with hyperacusis eventually get better but especially for people who have had severe hyperacusis for years this might be the only treatment that could help. I don't know yet whether I'm going to need it but I'm glad it exists.

 

[Layla23]

@Coffeebean
No I appreciate your input! I'm not going to pretend like I can't be wrong....because there's a chance I might be completely wrong.

My T reacts to even the sound of me breathing... so there is urgency for me.

Idk....I can't help but notice that the last thing many members with severe H or reactive T said on here before disappearing....was that their H or T would always permanently relapse after being exposed to sounds that shouldn't have hurt them ... (mine did as well). And from the countless of posts I have read on here....the consensus is that most of those were caused by high frequency sounds (again like mine).

So a surgery that might at least prevent me from getting worse (based on yes a hypothesis but at least a hypothesis I have found applicable to my own T and H experience) sounds very appealing to me.

I think for me...I would be more inclined in believing in the power of just using TRT if I didn't have to keep reading posts from other TRT advocates saying "well are you sure it's not misophonia" or "Reactive T doesn't exist" or "H can't possibly get that bad from small noise exposures". It's very frustrating for me and for other people like me.....becaus here I am living it and I've read the exact same things happening to other people.....and ppl on here will still try and say "well that's not possible".

Kind of reminds me of my experience with my ENT. She thought I was crazy for refusing an MRI. I was concerned about the noise exposure and now I'm so glad I didn't do it because I later read people with H should not get them done.

So I'm not against TRT per say....I'm just saying it's not the craziest thing to say that maybe TRT isn't 100 percent accurate or beneficial when it comes to people like me.... (for the reasons already stated).It's also not as appealing to me when I see that the people who constantly praise it don't even believe in severe H or reactive T.
It makes me not want to trust the program because in the end...I will have to live with the consequences if TRT or a high frequency sound damages me. People can give me advice and what not but advice is cheap you know? if I get hurt...then what?..I'm only 23...And the advice on here has already hurt me once.

For example, I was obediently following the advice of a Michael fellow "to not over protect my ears" and boom I was hit with an unexpected high frequency alarm and now here I am....100000 worse off than I was. I wish I had been wearing ear plugs like I always had been. Before that, I was actually living my life fully with T. Now I can't even leave my home.

 

[Layla23]

Again, I'm not against TRT and sorry to have gotten off topic a bit. I just think other treatments are worth exploring. And I'm posting about it because I don't want the same thing to happen to someone else. I got T because I was a people pleaser and I didn't like to say no to things—like going to bars. I later got H because I still couldn't help but listen to other people's advice before listening to my own body (not wearing ear plugs as suggested on here even though my gut told me to not do that ).

So if TRT works for people that's amazing! But if you feel like it's harming you (Like actual terrible spikes and not just the normal initial temp spikes), I think it's really important to listen to your body. I wish I had.

 

[Coffeebean]

@Layla23

I agree that TRT is far from perfect. I have not followed the traditional TRT myself, but used various aspects of it in combination with other sources and methods to work on creating my own desensitization strategies. Unfortunately for this condition the treatment options are limited and different things work better for different people. Whether you are using TRT or another method however, all of them seem to have in common that a slow, purposeful and structured increase in sound exposure is the way to recovery.

I do not deny that for some people, even low level sounds can cause an increase in their T or H and that this increase can last for a long time. However, I think it is important to point out that an increase in T and/or H is not the same as damage to the auditory system.

I've read a lot about severe cases of H, where even a slight rustle of a leaf could cause intense pain and discomfort for the patients, that took a long time to recover. I do not believe that in these cases, the rustling leaf actually caused any additional damage (at least not physical damage) to the ears and the auditory system. It's only that the auditory system is so severely sensitized, that even a very soft harmless sound is amplified so much in the nerves/brain, that these symptoms are triggered. What's interesting is that a lot of these people went from severe H, to only a mild sound sensitivity or even completely cured due to TRT, sound exposure, pink noise etc. If there really was a physical damage being caused by the rustle of a leaf at one point, it does not make sense that after a while they tolerate that sound perfectly well.

Of course, if you have H and even if you are recovered from it, it is prudent to always be careful around loud sounds. The mere fact that you got this condition, is an indication that your ears are a sensitive organ and that you might not have been as lucky as dozens of other people who go out to concerts without hearing protection and do not suffer from anything more than a mild hearing loss. Just like some people have a higher cancer or heart disease risk, others are more prone to hearing issues.

If you are still recovering, and especially if you get long-lasting setbacks, I believe the way forward is to be slow and gentle, but persistent, with your sound exposure. Some sounds, because of their volume or because of their high frequency, might still be too much at this point in time. Again, not necessarily because they are damaging something but simply because the H is still too severe. You mention a loud high-pitched alarm. Those can be very loud and damaging even to people with normal hearing. In the same way I fully understand that you were not eager to get an MRI as MRI's are also terribly loud and in fact have triggered or worsened hyperacusis for various patients. Many doctors are clueless in this regard an think you are crazy. I had similar experiences and it is best to be your own advocate.

I hope that whatever you chose to do will help you. Out of curiosity, how long have you had H and how have your LDL's developed during that time?

 

[dingaling]

Not sure if it's this surgery but if is there are people talking about it, it's just not that known and most people with hyperacusis are told that it will eventually get better on its own.

Edit: obviously we can't know for sure whether those people are saying the truth or not.

Most people with hyperacusis eventually get better but especially for people who have had severe hyperacusis for years this might be the only treatment that could help. I don't know yet whether I'm going to need it but I'm glad it exists.

No, I think this is something different to what Layla23 was talking about. I don't remember seeing anything about PE tubes in the video but when I get the time, I'll have a second look as it's quite long

 

[lymebite]

No, I think this is something different to what Layla23 was talking about. I don't remember seeing anything about PE tubes in the video but when I get the time, I'll have a second look as it's quite long

Two different procedures.

The round and oval window reinforcement procedure is done primarily by Dr. Herbert Silverstein in Sarasota, Florida (though a few other hyperacusis patients have had it done by ENTs in other cities and countries). Someone who had the procedure done in July 2018 posted last week that she was the 27th hyperacusis patient who had the surgery done there.

The grommet procedure is done by Dr. Timothy Hain in Chicago, Illinois. I have not come across any information on how many patients have had this procedure performed.

 

[lymebite]

Here is a link to the posts of someone who reports she had the hyperacusis surgery done in Sarasota, Florida last month. She includes some photos of the stitches on her skull from where the fascia was taken to serve as the reinforcement material.

https://www.facebook.com/groups/232505494060155/about/

 

[dingaling]

Two different procedures.

The grommet procedure is done by Dr. Timothy Hain in Chicago, Illinois. I have not come across any information on how many patients have had this procedure performed.

That was precisely my point - not finding any patient info or feedback on this procedure for Layla23

 

[Layla23]

@Coffeebean

Those are all good points. Especially with what you said about maybe using other sounds to desensitize the auditory system. I wholeheartedly agree that's a better route instead of harsh pink noise.

There's so many ways you can get H. But for the case of this argument...I think there's two different kinds of H that should really be distinguished from one another when considering TRt (in my mind). The kind where someone had some auditory damage but then severely overprotected their ears and developed severe H.....and the ones who (like me) did not overprotect at all and got shot with more auditory damage that gave us severe H. I think TRT can abseloutely damage you if you are in the latter group. Just because someone had very severe H and got better with TRT isn't proof that TRT can't hurt you. Because maybe that person had really severe T from overprotecting their ears. Not to mention that the people in the latter group tend to constantly relapse with their H after getting somewhat better (like I have after being overexposed to sounds that "couldn't" damage me). And I think that happens because certain sounds in certain frequencies can abseloutely continue to damage us (even if it doesn't damage other normal people or even other people with H....but maybe that's because they have a different kind of H).

Yes I based this off of my experience... but also the other experiences I have read on here and moreso recently the rat studies (still waiting on the full study to be emailed from the professor because I had only read the main excerpts on a different article).

Again, just a theory (and in no way advocating for people to follow suit). All I want is for people to just really truly question everything for themselves what they think is going to help them for their own T and H because all of our bodies are going to respond differently. I think we all have a HUGE responsibility to be really careful on what advice we give on here since most doctors can't help us. Everyday I wish I wouldn't have blindly followed the advice from Michael (my gut told me not to because my H sounded so severe compared to his) but it seemed he knew what he was talking about because a lot of people were supporting what he was saying.

 

[Coffeebean]

@Coffeebean

There's so many ways you can get H. But for the case of this argument...I think there's two different kinds of H that should really be distinguished from one another when considering TRt (in my mind). The kind where someone had some auditory damage but then severely overprotected their ears and developed severe H.....and the ones who (like me) did not overprotect at all and got shot with more auditory damage that gave us severe H. I think TRT can abseloutely damage you if you are in the latter group. Just because someone had very severe H and got better with TRT isn't proof that TRT can't hurt you. Because maybe that person had really severe T from overprotecting their ears. Not to mention that the people in the latter group tend to constantly relapse with their H after getting somewhat better (like I have after being overexposed to sounds that "couldn't" damage me). And I think that happens because certain sounds in certain frequencies can abseloutely continue to damage us (even if it doesn't damage other normal people or even other people with H....but maybe that's because they have a different kind of H).

I do not think that a significant portion of the people with H after auditory trauma got it solely because of overprotecting. They got it because of the auditory trauma and the way the nerves and brain respond to it. Because every sound seems so loud, and so painful, they start overprotecting, which jeopardizes the recovery process. It's not that overprotection started the H, it only that overprotection is preventing the recovery and exacerbating the symptoms.

I think you are describing yourself as a 'category 4' patient, which is a separate category of patients recognized by TRT who have hyperacusis whereby even low-level sounds can cause setbacks that do not recover after a good nights rest, but can last days, weeks or longer. From that perspective I can fully understand that you are very skeptical about normal sound levels not hurting your, as in your case they can affect your H easily and the effects last a long time. However, whichever way forward you chose, I think it is always important to be mindful regarding the distinction on sounds that can 'hurt' you in the sense that they trigger/affect your T and H, and sounds that can hurt you in the sense that they can cause actual physical damage/degradation of the auditory system.

Anyway, I am digressing a bit from the topic of this thread, and I do not mean to advocate or defend the traditional TRT treatment as indeed there is room for improvement there, I only wanted to point out that you should be very careful to conclude that a sound is damaging simply because it triggers your symptoms. If you decide to go through with the surgery I wish you all the best and I am looking forward to reading about your experiences.