Botox, Tenotomy and Tympanic Neurectomy for Noxacusis

Sorry for the delayed response, but to be honest, things haven't been going quite so well for me since my last post. I may have been too quick to my judgement on the success of the surgery and need to give it much more time. I have had a bit of setback from trying to push my noise exposure too much and much of my original noxacusis pain has returned. I am marginally better than before surgery and I am still hopeful I will continue to recover. From reading more into it this, it can take many months, and it's still been only a couple of weeks for me so I don't need to panic just yet. I will try to give updates going forward every 2 weeks to track progress. In answer to your questions:

1) I had to be there at 7 am and left about 5 pm.

2) I was given codeine. Some of my initial early success, looking at it now, may have been contributed to placebo, Diazepam (I took 35 mg over two days to handle the travelling and pre-op anxiety), the anaesthetic (because I woke up feeling great) and the follow-up codeine I was given (a regular 60 mg dose for 5 days.)

3) Yeah, Professor Bance did this himself.

4) Yeah, in Cambridge.

5) No, but I have a face-to-face follow-up appointment on the 18th of December. He has lasered my ear to prevent anything from regrowing.

6) Yeah, jaw pain and deep ear pain, not any ear tingling.

7) Some loudness hyperacusis, but not severe.

As I say, I have slipped backwards now pretty much to where I was, so obviously the past week and a bit has been quite a disappointment for me and tough to deal with mentally. This is because I was so excited straight after the surgery as my pain and sound tolerance had apparently significantly improved. However, I always told myself before surgery that it was unrealistic to expect any initial success and that it was more a procedure that would allow me to improve naturally more easily. In the tympanic neurectomy study it was an average of 2.1 months for people's pain to resolve, with some taking 5 months, so I still got plenty of time.

There appears to have been no negative side effects as of yet, my tinnitus is unchanged, if anything, still quieter. I do have a bit more ETD at the moment with some ear popping but this is normal after any ear surgery. It should still settle.

 

Thanks for the update.

I don't think the initial success should be attributed to a placebo. It was most likely the pain medication that reduced your symptoms. I saw a similar thing happen to another guy, but it turned out to just be the Fentanyl that they gave him post-surgery which reduced his symptoms.

 

Yeah, it would make sense that painkillers were responsible for some of the alleviation. Even drinking alcohol makes all of my symptoms go away for a few hours. I’m sure legit painkillers would give even more powerful relief.

 

Please stay hopeful @Olly132, I've definitely read of a lot of people taking a long time to heal after ear surgery. This is a mental battle more than anything. I think you've been in great hands with Professor Bance.

Thanks for keeping us updated. I'm going in for surgery next Wednesday, only the tendon sectioning for me, as I don't have hyperacusis and much pain, rather just a lot of noises in response to sound.

 

4 weeks post-op update:

I had my post-op follow-up appointment with Professor Bance two days ago. Sadly there still isn't really any improvement in my condition. However, in the consultation I mentioned the Botox trials that are currently underway in Belgium and France. One of the precursors to injecting Botox into the tensor veli palatini is to first try with with Lidocaine. Professor Bance said that we could try this if I wanted to, so he injected Lidocaine into 4 points in the soft palate in the roof of my mouth targeting the tensor and levator palatini muscles. Its important to note I had also taken 20 mg of Diazepam prior to travelling to Cambridge in order to handle the journey.

Anyway, after the injection it really was as if I had been 100% cured, I was able to talk normally, Professor Bance said try talking louder, so I did, and then the nurse asked if I could shout and I was able to shout as loud as I could. Professor Bance whipped out his tuning fork and smashed it 3 times in close proximity and caused me absolute zero discomfort.

Sadly, Lidocaine only lasts about an hour and by the car journey home I was no longer able to speak, yet the following day and today this doesn't seem to have caused any setback at all, and I am still in a marginally better state.

During the discussion with Professor Bance and after my results, we ruled out the issue being cochlea or damaged nerve related. We speculated that Botox injected into my TVP may provide some relief. The theory being that my overactive tensor tympani muscle (TTM) could have been tugging on the TVP (as they are attached) and this constant pull could have caused the TVP to tense up, to resist the TTM and cause a trigger point. The pain could be like myofascial pain syndrome, which can have the characteristics of burning and stabbing. My brain has therefore now been conditioned for the TVP to tense up in response to sound. So I need to find something to relax the muscle and break the cycle, wishfully hoping the Lidocaine may have been enough to do that but sadly not.

Although now as it stands, my condition is the the same, I have a new lease of hope and feel I am getting closer to solving this. I am now desperately looking for someone who can inject me with Botox.

 

I've just got to say @Olly132 that what you're doing here by updating your journey is providing amazing data along the way. I would also say it's offering a bit of hope to those of us who realised a long time ago that these conditions aren't something we just make up. They're very real phenomena, which is a result of very real underlying causes. Thank you so much for caring to take the time to write things up, and I hope you can find some lasting relief going forward.

 

It’s good to see that you’re exploring a lot of cutting edge options. I know it feels like a never-ending hell but try to remember that almost all hyperacusis improves eventually. I was very severe for years and have finally recovered to a functional level where I can do most things I could do before. I think if you can avoid further severe setbacks and noise injuries you will likely recover a good deal.

I’d be curious to hear Dr. Bance’s thoughts on central sensitization and its relation to pain hyperacusis. It seems strange that a tinny-sounding phone speaker playing music at a safe level is far more dangerous to me than a sporting event that reaches 110 dB with people shouting all around me. And why after going to a crowded bar or restaurant my hyperacusis is much less bothersome the next couple days. As though combining loud sound with the dopamine release of seeing friends and drinking teaches your brain that sound isn’t a threat.

There also seems to be a pattern of recovery for pain H and nox in which you rest and protect heavily during an “acute” period immediately after a noise injury. And then you gradually wean off protection and slowly reintroduce sound from low levels, taking plenty of breaks and rest days. The process can take many months. But the point here is that re-exposing to sound seems to help me improve more than just protecting the entire time. Which again suggests possible desensitization from a central sensitization issue.

 

Hi @Olly132!

thank you very much for documenting your experience, this has been hugely helpful. I was wondering, how are you now? Have your symptoms improved since your last update?

 

Thank you @Olly132 for sharing your experience! Too bad it didn't work out the way you had expected.

Your experience with Lidocaine is interesting, though. It reminds me of the time I experienced at an ER when I had kidney stone pain and they filled me up with painkillers. I felt like I could conquer the world, not being aware of my tinnitus and hyperacusis.

Why is that?

 

Hi all, many apologies for not keeping up with a regular update but there really hasn't been a lot to report on. My condition is no different at all; it is still severe.

Some positive news from today: I visited a university hospital Birmingham. There was a team of people who were all very intrigued by my case as they have never seen anything like it. There was an audiologist, a speech therapist, an ENT and a researcher there. What was refreshing was after explaining my case and without prompt from me, the audiologist stated that clearly something like sound therapy would only make my case worse. So glad to see someone with some common sense.

They would like to try the Botox procedure into the tensor veli palatini muscle via the soft palate with an EMG guided needle in approximately 3 weeks' time. The researcher, who I think is doing his PhD, also spoke with me privately and asked if he could publish a case study on me and track my progress after treatment. I of course agreed. Let's just hope it works and it can be another valuable piece of documentation for the community.

I assume because he couldn't a see any possible mechanism of how Lidocaine in the soft palate could stop pain coming out the cochlea as the only route that could really take is through the auditory nerve.

 

Thank you for the update, @Olly132. Too bad you haven't improved. I hope the Botox will bring some relief.

It seems that we have very similar symptoms.

Your cause seems to be an acoustic trauma, according to your profile. Can you tell me something more about it? How long ago did it happen? What exactly was the acoustic trauma? Did you feel something during the acoustic trauma? How long after the acoustic trauma did you start experiencing your symptoms?

Thank you.

 

Thank you very much for the update ,@Olly132. It is a shame that your symptoms haven’t improved yet, but I am hopeful that we will all get better. I am putting most of my hopes into Botox as well, and have booked a video consultation with Dr. Boedts in Belgium for next week. I am almost 100% confident that my condition has been triggered by some sort of anxiety (which in turn was caused by the acoustic shock) which in turn has caused some muscle in the middle ear to become hyperactive. In fact, I only recently realised that I had the same exact symptoms in the past during periods of intense stress.

Thank you again for keeping us up to date, your updates are invaluable. I will do the same should Dr. Boedts think that Botox is the way to go.

 

Are you still getting the crackle when you swallow?

I am, and I saw Professor Bance about this - along with other symptoms. He could hear the crackle too when he put a microphone in my ear or throat, so it wasn't just me internally that could hear it. In fact, anyone that puts their ear up to mine can hear it.

Feeling so fortunate someone could finally hear something I could, and sitting opposite a Professor with as much knowledge of the anatomy of the ear as any, I excitingly asked what it was... His response was, 'no idea, that's the $64,000 question, if we knew that we may be able to fix it.'

To say I walked out somewhat disappointed is an understatement.

 

I went to a rave in Augugust 2022. I didn't feel anything out of the ordinary at the time. The symptoms started about 4 days later.

I sometimes have a crackle when I swallow but that's not so bad these days. I'm pretty sure it's the Eustachian slapping about though. I don't see what else it could be and that's what it feels like to me.

 

I had a great meeting with Dr. Boedts virtually on Thursday, though I'm quite a ways away in the United States. I am considering a trip to Belgium this Summer or Fall for treatment with him and/or Dr. De Ridder. He is a pioneer and is very willing to work with our unique patient population. I hope he can see more patients and publish case studies on his findings. He told me to check back in in 2-3 months as he felt he would have a better understanding of the mechanisms behind our condition.

I am very confident my condition has also been worsened greatly by my own anxiety and nervous system being on 'high alert.' Dr. Boedts said he only recently found that he underestimated the anxiety component of the condition and encouraged me to trial Clomipramine or an anti-anxiety medication regiment again.

 

It's possible it's the Eustachian tube. I can voluntarily bring this noise on by tensing 'something' in my ear, which raises the soft palette. Prof. Bance saw that one at least.

Mine happens every swallow, and I can bring this on with a tense for 14 months now. The only time it goes away is after a yawn - where it disappears for 3-4 swallows before it is back again.

It's very very loud, as loud as a mirosuction gun in the ear canal, but the least of my issues. I just believe it may be a part of the jigsaw puzzle to some of my other issues.

 

What are you symptoms? I want to talk to Dr. Boedts myself!

 

I am intrigued by your experience with Lidocaine, @Olly132. So, I was wondering why Lidocaine can lower tinnitus (and even hyperacusis) symptoms.

Maybe the reason is this:

If Lidocaine lowers hyperacusis/noxacusis symptoms too, then hyperacusis/noxacusis could be caused by the discomfort feeling and pain signals of OHCs (afferent type II = nociceptors). Sounds may not really be perceived louder, but you get an uncomfortable feeling or even pain at lower sound levels. These pain signals would be blocked too by Lidocaine.

 

In my case though the Lidocaine wasn't injected like an IV, it was intramuscular directly into the peritubal muscles via the soft palate. Effectively a local anaesthetic, I don't see any mechanism how that could block pain in the cochlea, and Prof. Bance thought the same. Therefore I don't think your theory is plausible, for why it was so effective for me.

Also, the fact that not only could I feel no pain, but I had no setback following this. Therefore, I feel it really blocked the underlying problem by working as an anesthetic and muscle relaxant. Normally, with sound, I would feel a muscle contraction in the ear, but I did not feel this. So I'm obviously very hopeful Botox will provide relief. It may not have as powerful an effect as Lidocaine, but I'll take anything I can get.

There's another possibility that I may need to look more into. I noticed the other day that the nervus intermedius innervates some of the soft palate. Therefore, there may then be a link to geniculate neuralgia with that. I'm not sure without really looking into it.

 

Maybe Prof. Bance needs to look into the theory of Prof. McNaughton.

Good luck with the Botox!

How is your audiogram. Probably not that bad?

 

How did you get ahold of Dr. Boedts? I've emailed the clinic twice and have had no reply.

 

They usually took a day or two to respond. I was corresponding with: luisterkliniek@mijnziekenhuis.be.

 

The crackle is a weird thing. I have it and it is loud. But I don't notice it unless I think about it. I even have no idea if I had it before tinnitus/hyperacusis. I think I had, but I am unsure. I guess I must have, because otherwise it would be new and bother me. Maybe a case of habituation. I wish I could habituate to my loud variable tinnitus

 

I do still have the swallow/yawn crackle, and I'm pretty sure now it's the Eustachian Tube that is causing these problems. It's likely due to a negative pressure on my left side. I started using the Otovent balloon about two weeks ago, three times a day. It gives temporary relief but not long-term yet. Apparently, over time, clearing the tubes may give the Eustachian Tube the opportunity to heal on itself/restore the pressure issues, and hopefully get rid of the crackle. I read about this online, and it's also the advice Prof. Bance gave me. If this doesn't help at all after a few months, I could start considering inserting a ventilation tube/grommet to help fix the pressure issues. Or balloon dilatation, but they don't do that here in The Netherlands, and it's unclear if it'll help with this specific issue.

 

(Source)

 

Thanks for the feedback.

I saw another ENT last night and got him to listen to the crackle (as I can voluntarily induce it, along with swallowing). He tried to convince me it was normal.

I also may have expected issues flying if this was Eustachian tube-related, but I don't seem to have a problem. Just came back from an 11-hour flight.

 

Lidocaine has been used by dentists. Not anymore, because it needs more time to kick in.

Lidocaine is a HCN2 blocker.

Now think. For what purpose would the dentist inject the Lidocaine? Why is Prof. McNaughton targeting the auditory nerve with his HCN2 blocker?

 

Unless I'm missing something here, I'm not too sure where you're going with this. You're being quite cryptic.

The source you posted referred to tinnitus. My tinnitus was completely unchanged after I had the Lidocaine injection.

Lidocaine can be injected into trigger points of a muscle as a precursor to Botox to give indication if the Botox will have any effect. This is what Dr. Boedts does.

My sound induced pain seems to be caused by a muscle contraction in or near the ear. Lidocaine injected into the muscle prevented the contraction in response to sound. Which apparently cured my sensitivity to sound, albeit for a very short period. Therefore, along with the case study we have of a patient who was cured of pain hyperacusis with Botox, I'm hopeful this will be the same for me.

 

All the best @Olly132. I hope you get the results we all want.

 

What kind of pain do you get? And would you have to keep having Botox injections regularly?