Botox, Tenotomy and Tympanic Neurectomy for Noxacusis

I have been suffering with noxacusis for a little over a year now, initially caused by acoustic shock. There's been lots of ups and downs and it has drastically changed my life. The past month it has got significantly more severe. I had an appointment with Professor Bance in the UK and as my situation is so dire, he has agreed to help in anyway he can, obviously giving no guarantees.

I believe my symptoms fit Noreña's model pretty well. I experience what can only be described as a muscle cramp in my right ear, induced by noise. If I have a severe cramp, it triggers delayed burning, stabbing pains and a lot of inflammation.

On this basis, short-term I'm being prescribed Carbamazepine, whilst we schedule in a procedure to have Botox injected into my tensor veli palatini. This is based on a successful case study in another Noreña paper. However, this was not Bance's preferred method as it's not something he's experienced in and seemed a little puzzled as to how it would work, therefore he needs to refer me to someone who has experience to carry out this procedure. Nevertheless, he did seem to be intrigued to find out whether it would have an effect or not.

If that fails, Bance's preferred method would be to carry out a tensor tympani tenotomy and tympanic neurectomy, which part of me is tempted to go straight for that option to be honest. Bance said he has seen success with this in the past and 99% of cases are without side effects.

He was very open that this may or may not help, he's not fully convinced of the Noreña model with there being a lack of sufficient evidence but as the procedures are relatively safe and my life is on hold right now, he thinks there is not a lot to lose.

It was very refreshing to have a doctor finally listen to me and not just try to palm me off to therapy. Interestingly he didn't once refer to my condition as hyperacusis but 'symptoms of acoustic shock'.

I will keep everyone updated with my progress here. It may take a little while before the procedure is scheduled. Other things I'm doing in the meantime include low histamine diet, neck exercises and brain training (to combat any issues of central sensitisation, stress and anxiety). I have seen great success with the brain training previously, but this setback has sunk me a bit too deep into a hole. These are all methods of treatment that would address various aspects of Noreña's model. I feel the symptoms of acoustic shock can be very diverse, complicated and difficult to resolve, therefore attacking this from all angles at once will give me the best chance of long-term success.

 

Professor Bance has seen 99% success in treating pain hyperacusis patients with this approach?

 

Thanks for sharing your story. Do you have noxacusis in both ears? Any tinnitus to go with it? I have hyperacusis in my right ear only from an acoustic shock in February 2023. A drunken 6-hour night at a night club did me in. I was fatigued going into that night out and probably just caught off guard. I went to bed drunk and woke up with continued ringing in my ears, fullness in the ear, and the sound of the bathroom sink sounded off. It went from loudness hyperacusis and just an annoyance with sounds to noxacusis by mid-July 2023 - dishes clinking, dog barks, even some digital audio - all sounded painfully uncomfortable. I was also a drummer in my youth (rarely used ear protection) and AirPods user - just for background. My neck has been insanely stiff since hyperacusis onset, I wake up with jaw tightness, and I also feel facial pain down my right cheek on the affected side. Maybe it is some trigeminal nerve activation. Tinnitus is relatively new but also started back up for me and feels more central than the hyperacusis which is limited to my right ear.

Have you had any luck with the Carbamazepine? If so, what dosage? I take Gabapentin sometimes and it can be helpful. I think you nailed it with the description as a cramp in your ear. Hyperacusis was once described in one of these forums as potentially a tendonitis of the ear. I couldn't figure out where the sound induced burning was coming from (and originally described it as nerve pain) but I think it's muscular in nature and middle ear muscles contracting in response to loud, unexpected, or high frequency sounds. My acoustic reflex almost feels too strong. And because the ears never get a break from sound.

I have had some pretty good success with Magnesium L-Threonate off Amazon. The feeling of ear fullness and a pulling sensation in my ear has mostly subsided after a few weeks of a 144 mg dosage at night. Magnesium is a natural smooth muscle relaxant. I found the equivalent product for you on Amazon UK. This in combo with 100-200 mg Gabapentin and an earplug during the day and some very gentle pink noise has my ear feeling pretty good - the best it has in 3 months. Of course, I'm still avoiding loud environments so I'm not sure how quickly this progress could unravel when I'm back to work.

Please keep in touch here on your progress. Hopefully we can continue to share success stories and heal together.

 

No, he has carried out this procedure a lot for MEM, TTTS and maybe other conditions that would warrant a tenotomy. And 99% of the cases have been without any side effects. Not necessarily successful. Basically implying it's low risk to give it a go. But only because my situation is so dire. It would not be first port of call if I could function, leave the house and talk. He said his worry would be me getting an increase in tinnitus. He said patients normally see a spike in tinnitus for about a week after the op. This is because there are some foam type pads left in the ear which dissolve over the course of the week. However, to date, touch wood, all his patients' tinnitus has returned to baseline. But that doesn't mean there isn't a risk.

 

• Our cases sound remarkably similar.
• Right ear only for me, but now tinnitus in both since this latest setback.
• Maybe try some neck exercises for your neck.
• I haven't started Carbamazepine yet, waiting for prescription. I will be starting on 200 mg per day. If I don't feel any effect, I will move to 200 mg twice per day.
• Thanks for the Magnesium link. By the way, the middle ear muscles are striated muscles, not smooth, but Magnesium, in theory, should still help.

 

I have something similar 2+ years in.

Tell me more about the "brain training"?

 

Just to give an update.

I was not prescribed Carbamazepine in the end, but Gabapentin instead. I was on the drug for 7 days. It was clearly not a drug that agreed with me. I tapered up to 900 mg by the 7th day, as prescribed, I woke up after an hour of sleep that night with a nasty spike in tinnitus and a lot of anxiety. It could only have been the Gabapentin really.

In the meantime I have been unable to find a doctor who could carry out the Botox procedure for me, other than one a 7 hour drive away which I wasn't really prepared to do.

Therefore I have gone back to Professor Bance and ask to go ahead with the surgery. My operation is scheduled for the 20 November 2023 where I will be having tenotomy of both the tensor tympani and stapedius muscles, tympanic neurectomy and the round and oval (Dr. Silverstein) surgery carried out all at the same time.

Wish me luck.

 

Hey @Olly132,

I have a call with Professor Bance next week!

I just underwent surgery for only the tensor tympani. Doctors are quite conservative here in The Netherlands. I think it helped with some of my symptoms, but certainly not all of them. I still have a lot of crackling and thumping in response to certain sounds and frequencies, and a very loud crackle when I swallow or yawn. Hopefully, I'll be getting the same surgery you are getting. I actually didn't know the tympanic neurectomy and the round/oval surgery was a part of it, that sounds great!

I wish you all the best for your surgery on the 20th. You got this, and please keep us updated.

 

Best of luck to you. Please report back. Is it still just the one ear? What's the mental model of doing these all at the same time? Was there an option for a 1 by 1 approach based on what would be predictably be most efficacious?

Either which way, sending my best wishes to you.

Hey there! Was it one or both ears? Do you have pain hyperacusis? What was the result of the tensor tympani surgery?

Is there a #1 doctor in the Netherlands for hyperacusis? Similar to Dr. Silverstein and Dr. Nyack here in the USA in Sarasota, FL.

 

Hi Colvis, what were your symptoms before you had the tensor tympani cut, were you in pain in response to sound? If so, how much pain and was it instant or delayed burning pain? Which of your symptoms has it resolved?

If you only and the tensor tympani cut recently then I have heard it can take up to 6 months for symptoms to settle, so it may still be worth waiting before considering further surgery.

Having the neurectomy and round/oval window is more for if you are experiencing pain and hyperacusis.

Obviously I’m not exactly looking forward to having surgery, each one of these operations I have heard of providing some relief on their own so I would rather just get them all done at once to give myself the best chance of success.

Doing them one by one would cost me three times the price and risk side effects after each operation. Professor Bance has recommended all this so I’ll let myself be guided by him.

I expect cutting the tensor tympani will be the most beneficial, as most of my pain seems to refer through the trigeminal nerve.

Of course I will report back. Thanks.

 

My symtoms were a loud crackle/thumping/itch/woosh feeling after sound, mostly after louder sounds with higher frequencies. All in my left ear only. This has gotten progressively worse, so it even responds to me speaking on a somewhat above average volume level. This is definitely the most annoying symptom, and I also have some pain, fullness, pressure issues in the same ear. Especially after exposing my ear to sounds for a while. And I feel a loud crackle when I swallow and yawn, also very annoying.

I agree it can take a while for the symptoms to settle, but I do think I've gotten to know my body and ear very well the past years, I think only sectioning the tensor tympani hasn't completely done the trick. It's been 3.5 weeks since surgery. The crackle/thumping is less than before though, so it definitely did something. The crackle when swallowing is still very prominent, that might be something else or the healing process. No pain or hyperacusis afterwards whatsoever.

I've talked to quite some people that've had the surgery you're getting and the results are overwhelmingly positive. I really hope it helps you.

Only the left ear. No pain hyperacusis afterwards. Actually my ear hurts less than before surgery. There's no #1 ENT doctors here unfortunately, they're good doctors but quite conservative. So the very rare issues like we have are not something they're familiar with or have solutions for. That's why Professor Bance in the UK is my next stop.

 

@Olly132, did you get the surgery? I am also considering it.

How much did the surgery cost, out of curiosity?

 

Time for an update on how my surgery went.

4 days ago I had my tensor tympani and stapedius sectioned, tympanic neurectomy and round and oval window reinforced. This was in an attempt to alleviate symptoms of pain hyperacusis/noxacusis.

Beforehand my symptoms became extremely severe, no sound tolerance whatsoever and crippling open/wound burning pain.

The surgeon has performed nothing short of a miracle in my opinion. I asked him to be as aggressive as he could with the removal of the tensor tympani, as I believed this to be the root cause of most of my pain. Well he certainly delivered and was able to remove the majority of the muscle; he has done a lot of drilling in the ear to be able to do this.

My crippling pain has been immediately resolved, I still have a lot of surgical pain, it feels heavily bruised, which is no surprise with the amount of drilling. My sound tolerance is also definitely increased. I no longer have a tension or pulling feeling. I have been able to watch TV at normal volume with little discomfort. I am still sensitive to sound but this is improving day by day. My reaction to sound at the moment seems to be causing ear fullness and pressure, but this eases very quickly as soon as I go silent. There will also still be lots of fluid and inflammation in the middle ear. I'm very confident this will improve as I recover. I drove 2 hours today without double ear protection which hasn't caused the slightest bit of agitation. Talking is still a bit of a challenge for me, but I think I just need to rehabilitate myself to sound slowly, again, after being in complete silence for months, I'm sure this is normal.

Amazingly my tinnitus is significantly quieter than before surgery as well. And the tinnitus in my unoperated ear is completely gone. I had like a buzzing in my unoperated ear that I was convinced was somehow muscle related and it was as if the muscles were trying to copy my bad ear.

I still have the packing in my operated ear so it's still completely sealed up, which I can remove myself after 7 days. So I will see how my sensitivity is then. I'm also not supposed to wear an earplug at all in that ear for a month, so I hope it will be okay.

All around so far, these are really promising early signs, I'm not out the woods yet by any means, but my quality of life is already much improved.

The surgery cost me £5,900.

 

This is really great news. I am absolutely ecstatic for both you and the community as a whole.

Professor Bance recommended a similar procedure to me last year, but I was hesitant as I had not heard of anyone receiving a tympanic neurectomy.

Some more questions:

1) How long did you have to stay in hospital? Overnight?

2) Were you given any pain meds which might be contributing to current symptom reduction?

3) You mentioned 'the surgeon'. Did Professor Bance carry out this procedure himself? Or was he managing/consulting on this?

4) I'm assuming you had this procedure done in Cambridge?

5) Did Professor Bance mention anything about possible revision surgery? In the literature, revision is often needed for tympanic neurectomy.

6) Your noxacusis pain, did you get nerve pain along the jaw area, as well as a deep pain in the ear? How about random tingling feelings around the ear?

7) Did you have loudness hyperacusis?

Please can you give us regular updates? Particularly after you remove the ear padding, and after around a month or so once the surgical pain disappears?

Thanks.

Are you saying your hyperacusis went away after the surgery? Did you have loudness hyperacusis, pain byperacusis or both?

 

That’s wonderful news! I really hope your symptoms get even less and less and that you’ll experience a full recovery. You seem like another part of a long list of successful patients that have had the surgery by Professor Bance.

I have a surgery date with him on December 13th. I had the tensor tympani sectioned 7 weeks ago in The Netherlands, and I’m afraid there’s still some symptoms left and that a new surgery is necessary. Last week felt really good though, strangely enough. I guess it does take a really long time for it to heal. I made an agreement with him that I’ll decide next week if we’re going through with it, or that we wait a little longer. Still making up my mind, to be honest.

But great stuff man!

 

Are you saying your hyperacusis went away after the first surgery? Did you have loudness hyperacusis, pain hyperacusis or both?

What is the second surgery that you have scheduled with Professor Bance? What procedure is it and what are its aims?

 

Hey, do you mind sharing which doctor sectioned your tensor tympani? How did you convince the doctor to do the surgery?

 

You have noxacusis, right? Would you consider the tympanic neurectomy? I'm seriously considering it at this point as it doesn't seem like there is much to lose.

 

Noxacusis has become a bit of a vague term but I do have painful hyperacusis.

I'll probably do Botox first to see if it does anything in the first place.

 

How are you feeling now, after the packing has been removed?

I don’t have hyperacusis, in that loud sounds don’t really hurt but I feel a loud crackle/itch/woosh and thumping in response to a lot of sounds. And that gets irritated after a while, and does start to feel bruised. I also experience a loud crackle and popping when I swallow and yawn.

Second surgery will also section the stapedius tendon and double check if the tensor tympani has been properly sectioned and hasn’t reattached. I’m not sure about the tympanic neurectomy, I will ask if that’s a part of the procedure but I don’t think so. We might also try a grommet for the Eustachian tube issues, but we’ll decide on the day of surgery. Those symptoms might also resolve when the tendons are properly sectioned, no guarantees unfortunately but that’s standard procedure.

The doctor in The Netherlands is called J. Mulder in Nijmegen. He offered to section the tensor tympani because it ‘could solve some things’, but mostly because he had no idea what my problem was and didn’t have any other suggestions. It relieved some of the crackling but certainly not all of it, and I still have thumps in response to electronic sounds. Professor Bance is more experienced with ‘special’ causes like ours, so that’s why he’s my next step.

 

I don't know if you have seen this paper on the tympanic neurectomy, but it is very interesting.

It seems that many of the participants most likely had a form of pain hyperacusis. It shows them as having hyperacusis + pain-related symptoms. One of the candidates later had a reemergence of symptoms after attending a concert, which sounds exactly like a setback, which further leads me to believe the patients had a form of pain hyperacusis. Furthermore, many participants say their symptoms began from loud noise exposure.

The paper found complete resolution of pain in the patients who were experiencing pain + hyperacusis. One participant had a setback after the procedure during a concert, but it was resolved after revision surgery.

This seems like a very important paper which has not been discussed much. Professor Bance himself has confirmed that he has used this procedure to remediate sound-induced pain in many patients. It seems most cases are without side effects as well. I have an appointment with him next week to discuss further.

 

I have facial pain and tension along the cheek up towards the affected ear with hyperacusis. Any idea where we could get Botox to try to relax some of those middle ear muscles? I believe they're the culprit of the pain...

I still don't know how to fix the the fact that too much noise exposure will start to make me nauseated and sound just feels harsh and scratchy in that ear.

Gabapentin seems to help me a bit to reset things overnight.

I saw some of your posts on Clomipramine. is there still something that isn't addressed by it that you're hoping can be with the tympanic neurectomy?

 

Interesting that the person who had a setback had a second successful surgery. Loud noises cause me stabbing pain but also a lingering raw burning feeling that can be 24/7 if I experience major setbacks. If some sort of procedure or combination of procedures can permanently fix me, I’ll be first in line. I definitely feel a “spasm” in my ears whenever there’s a loud sound.

 

A guy is currently being treated by ENT doctor Boedts Michaël from Ghent.

Dr. Boedts does Botox treatments and works together with Noreña.

If everything goes well, I have an appointment with him soon.

 

My understanding is that revision surgery seems quite normal for this procedure either due to regrowth or just not cutting enough of the nerve away. There are many, many papers on this procedure, many of which discuss the need for revision surgery.

I'm at the point now where I'm thinking I may as well just go for the tympanic neurectomy, in addition to tensor tympani and stapedius removal. I noticed a pulsing in my ear started around the time I got noxacusis, so that could be a strong indication of middle ear myoclonus which might even be related to or a contributor to my noxacsis.

Either way, it seems all of these surgeries are very low risk, with little to no side effects in the long run. Although there are no guarantees, these procedures have completely cured people's noxacusis, sound-induced pain, pain hyperacis, or whatever the hell you want to call it.

 

It's weird that it is so difficult to find a doctor who will administer Botox to the middle ear in Europe. Even Professor Bance doesn't seem comfortable administering this procedure even though he is an expert in middle ear surgery.

Is there anything Botox would do that removing the muscle wouldn't?

I'm assuming if the Botox works, the next step would probably be just to remove the muscle, right?

 

Are there any other accounts about these procedures for people with hyperacusis? Any type of surgery worries me but catastrophic hyperacusis has tortured me for almost half a decade now.

That said, I’ve also recovered a ton, so I’m not sure if it’s justified unless I have another severe setback down the line. I’ll have to think about it and read as many accounts of people who have cured their hyperacusis/noxacusis with it.

And to be clear: this procedure isn’t just the Silverstein surgery, right? It’s that combined with removal of the tensor tympani as well? And then you’re saying another nerve gets completely cut out too?

 

I haven't found anyone else who had the surgery. However, the literature clearly shows that more people have, and Professor Bance has confirmed that it has been successful with some patients.

The procedure in the paper is not related to the Silverstein surgery. The tympanic neurectomy consists of sectioning the tympanic nerve and nothing else. It can be combined with other procedures though, such as the Silverstein surgery, and removal of the stapedius and tensor tympani muscles. Someone in that paper had the Silverstein surgery in addition to the tympanic neurectomy, but none of the participants had their tensor tympani and/or stapedius removed.

 

To be clear, I’m not trying to argue. Can you point me to the reports of resolution of hyperacusis, noxacusis, etc, as an outcome of the surgery? I’d like to read about them.

 

I cannot point you to what you are asking for as it does not exist. There have been no such studies, unfortunately.

It is important to note that this paper (and similar papers on this surgery) considers the symptoms simply as otalgia rather than 'pain hyperacusis' or 'noxacusis'. Honestly, it leaves a lot of questions and no guarantees. But it seems a route worth investigating.

However, please see my earlier comment: