Surgically Cutting the Tympanic Muscle in an Effort to Help Severe Noxacusis (Pain Hyperacusis)!

I´ve been refered to an ENT surgeon to have my tympanic muscle cut. This in an effort to help with my severe noxacusis.

The reasoning behind it is that it acts up as a startle muscle and irritates the trigeminal nerve that brings on the pain even by every day noise.

Anybody have any knowledge of this?

 

I think that surgery cannot be reversed, so I would be very cautious and would inform myself well before proceeding. Maybe you can have a second opinion by another ENT.

 

I think @japongus has done quite a lot of research regarding this and he's still on the fence about it. From what I can remember there are both good and bad outcomes from this procedure over at the archives of chat-H. I'd be very cautious about this since it isn't reversible.

 

I've really got nothing to lose at this point.

 

Some treatments will become available this decade which might help with hyperacusis! Regrowing the tensor tempani muscle won't be possible.

 

You don't know that. If you already have hearing issues, you know things can change from one day to another, and that your hearing can change for apparently no reason out of the blue.

For me health conditions fall in two categories:

1 - The doctor lists the treatment options or surgeries available, and can give statistics of recovery rates, side effects and other risks. The doctor is familiar what the health problem at hand (the best example, cancer).

2 - The doctor can only provide vague information, does not want to be compromised saying anything wrong. The doctor has basically no idea about your condition, due to (i) lack of experience and / or (ii) the condition being very uncommon; and / or (iii) there are no known treatments or standard treatments or surgeries for it.

Category 1) is usually more scary at the beginning, till you hear the treatment options and gather all the information. It may be in some cases lethal too, but at least there is decent research and available surgeries and treatments. It is the beaten track.

Hyperacusis, tinnitus and other rare hearing disorders fall in category 2). That's why it is best to be cautious.

I say this because a doctor offered me a "cutting edge surgery" and it turned out that this ENT had only performed it 10 times in his life, with mixed results, maybe 3 improved, 3 worsened and 4 stayed more or less the same (but with an ear muscle cut).

A surgeon performs certain surgeries several times a week. So if you ask and this is really experimental, be cautious. For me it would be a no no...

 

This referral came from the leading ENT in Norway when it comes to hearing. I guess it's experimental, yes, but I can live with that. It's been done before. It's not something he just pulled up from the hat.

3 cases improved!!! That's enough for me. I'm at the end of my rope here. If this muscle was imperative to hearing, I don't think they would do it.

 

The cases I was referring to, and the opinions of ENTs, also came from reputable doctors, people with 40 years of experience, and very good surgeons, so don't be influenced only by that.

Even if a doctor is the best surgeon in this world, there can be no guarantees about a procedure she has performed maybe 10 times in her life.

 

You could look into tympanic patching? It's non-invasive and reversible...

 

Brai3n is offering this in Belgium. I'd love to hear people's experience with this. It still seems kind of experimental.

 

Could you share some more info of that case? Links?

 

@grate_biff is it possible to keep us updated in case you decide to proceed with that?
It's the first time I read about the surgery.

 

Of course I will!

 

That's very kind of you. I wish you will end up following the most beneficial for you route.
Good luck in case you go for it, but do your homework before. A surgery is always risky.

 

This ENT proposed cutting the muscle attached to the hammer bone. But had only performed this surgery like 10 times in his career, with mixed results, so I decided not to go for it.

A surgeon typically performs some procedures several times per week, so in my opinion it was risky to go for an unproven surgery where the doctor lacked experience.

 

@Juan I had the round and oval window reinforcement surgery performed by surgeon who never ever had experience with this surgery but I assume that this surgery it's much safer and easier to perform compared with cutting the tympanic muscle ?

 

To my understanding, the round and oval window reinforcement is less invasive. Cutting the muscle cannot be reversed, and the patient cannot really be sure about the outcome for his or her individual case...

 

Could you point out to which treatments you are referring to? The redesigned Trobalt seems quite promising as several have reported hyperacusis improvement when on Trobalt. The best of all worlds would certainly be if hair cell regeneration would resolve the underlying cause and we would be relieved from the pain indefinitely without being constantly on any med. But that is maybe wishful thinking.

 

Yes, the redesigned Trobalt and the various hearing regeneration projects will hopefully have a positive impact on tinnitus and hyperacusis. Unfortunately they aren't tested for H so we'll have to see if it has an effect.

 

So there is absolutely no way to treat pain hyperacusis? No nerve to treat?

 

@grate_biff I talked to a woman who successfully had this surgery. She said it worked to treat her TTTS. Is that what you have? I want to treat that and treat the pain I think it's causing.

 

All I know is that sound is killing me. I can´t take any sound at all. It is pure torture.

I am stuck between the two theories, type 2 nerve fibers or TTTS irritating the trigeminal nerve.

There is a way to establish if TTTS is the culprit, but sadly they don´t have that equipment in Norway (they do in Belgium) so they won´t help me here before they know TTTS is the problem. I´m fucked.

What kind of symptoms did that woman have? Did the pain go completely away?

For me every sound I hear is like glass shattering through broken speakers and it hurts like hell with a reactive ultra high frequency "swooch" to go with it. I do feel very cramped up and tense in my inner/middle ear as well so it might be TTTS, but there is no morse code-like tinnitus or thumbing going on.

I really don´t know what to do. Seems like most ear surgeons are afraid they´ll make it worse by surgery.

I need it diagnosed. Could you ask that woman how they did that?

 

Dr. Santos Mass Eye and Ear (617) 573-3936 <3
@grate_biff is the doctor.

 

Is that in the US?
Anything else you could tell me about that woman who had this done?

 

Hi @grate_biff,

What about injecting botox to the muscle? It has also been done before, and you will see an effect in a few days - maybe a help to make this difficult decisions about cutting the muscle.

Botox will go off in about 3-4 months completely.

All the best!

Another thing do deal with the stress, it might help a little: I recently found out that Baldrian tee can calm down the nervous system quite good, with very little side effects.

Don't lose hope!

 

I'd love to see if anyone has had success with the botox treatment.

 

@grate_biff There is a surgeon in the UK as well...

 

Ever ended up doing the surgery?

 

It did nothing!

 

Ah shit, sorry to hear that. Have you gotten any better over time? Noxacusis is a complete nightmare. Mine only gets worse. I am pretty much in searing pain all the time.