Botox Injections Into Stapedius or Tensor Tympani Muscle? Where to Find an ENT Who Performs It?

[markoana]

One in 100,000 is the number their research gives them, but that's based on reported symptoms by people who have been in a position to actually report them and be heard. Given the number of us here who have been patted on the head medically and sent on our way, I wonder how many more of us would have reported just such symptoms were anyone interested in actually collecting the information instead of sending us away to "learn to live with it"?

I think the only real way to diagnose spasm is to see it. Failing that, a less invasive method of testing that could detect hyperactive muscle activity through some kind of vibration or electrical discharge would seem possible. Even if you couldn't say for certain which muscles in there were the ones spasming, the very presence of spasm identified non-invasively would be a great diagnostic starting point. I've seen literature that suggests that the TT and the Stapedius present their symptoms somewhat differently when in spasm.

U are totally right, I have to agreed with your conclusion about number.

BTW. It look little invasive to do some botox injections without precise indications and diagnose that muscle spasm is present. And i have feeling that most of ENTs do not know to recognize it, that's why I ask @Mojo did those two clinics (where he got a positive answer) said something about diagnose.

 

[PaulBe]

It look little invasive to do some botox injections without precise indications and diagnose that muscle spasm is present.

You are absolutely right. These procedures are what Japongus referred to as a "crap-shoot" without a proper diagnostic process. In many cases though it may be worth taking the chance. I don't think I'm there but I've seen some here who are.

If the Botox thing could be refined it would make the perfect diagnostic tool for anyone being considered for tenotomy.

 

[japongus]

I have musclespasms in my ear that sound like thumping, so the ent said it was myoclonus of the tensor tympani,
So after reading a lot of the same symptoms on the net i guess thats the only label you can put on it.

Do you also have sound sensitivity when you get the thumping?

Is the thumping more of a blown speaker effect or is it so audible other people can hear it?

 

[japongus]

You are absolutely right. These procedures are what Japongus referred to as a "crap-shoot" without a proper diagnostic process. In many cases though it may be worth taking the chance. I don't think I'm there but I've seen some here who are.

If the Botox thing could be refined it would make the perfect diagnostic tool for anyone being considered for tenotomy.

The healthboards forum oto area have comments from various people giving themselves botox for palatal myoclonus. Among them are quite a few saying it does or can give you autophony issues due to eustachian tube dysfunction, which is quite a miserable condition. For instance, Lib, a user from healthboards and chat-hyperacusis, went with tendon cuts instead of botox because of this. So I'd be careful with it.

 

[Mojo]

Thanks for the responce when i have the thumping i dont have any soundistortion.
I do feel a spasm in my ear like the one you can feel in your eyelid or other muscles.
I do have those musclespasms
Sometimes in my arms and leggs and other places too but the one in my ear bothers me the most though.
Greetings
Ron

 

[Mojo]

Thanks Japongis for the warning!!

 

[PaulBe]

Sometimes in my arms and leggs and other places

By the by, have you been investigated for any other neuro-muscular type conditions?

 

[PaulBe]

I would have thought that botox-ing Palatine muscles is an even bigger crapshoot than doing to the TT or stapedius.

 

[Mojo]

In 2001 i had also a lot of muscle spasms and heart palpitations so they send electrical charges through my nerves and muscles everything was ok.
They put me on magnesium and after a week the spasms were gone.
I take magnesium now for months with no result unfortunately.

 

[japongus]

I would have thought that botox-ing Palatine muscles is an even bigger crapshoot than doing to the TT or stapedius.

Healthboards is a good forum to check out follow-up reactions to treatments. You have often complained that in journal papers we don't get follow ups from the patients to see how they're doing, so you might find interesting things there, in the otolaryngology section, search keywords.

I'm not sure, but I don't think they've been applying botox to the veli palatini. I mean, I think that really does control the patulous eustachian tube, so I guess it would be risky. But I think over in healthboards they have both positive and negative reactions to the application of botox for palatal myoclonus, not the same as veli palatini, as palatal is a form of myo that gets more attention from docs for some reason.

 

[japongus]

In 2001 i had also a lot of muscle spasms and heart palpitations so they send electrical charges through my nerves and muscles everything was ok.
They put me on magnesium and after a week the spasms were gone.
I take magnesium now for months with no result unfortunately.

With your history of metabolic-induced problems, I have heard that ear issues have different etiologies, and that if your etiology is metabolic you're in luck. I had a test for different minerals done on my skin once, which is supposed to be more reliable than blood levels, and though I have very little knowledge on the subject, apparently you have to get ratios of minerals to other minerals right, so maybe you need to check more minerals and their ratios, so maybe a nutritionist that does this can help, or maybe you can buy the tester yourself somewhere or build it with your own 3D printing machine...

 

[Chelles]

@Mojo were you able to find a doctor to inject you with botox?

 

[japongus]

Well can't remember exactly but Sismanis said something along the lines of that it could miss key muscles or seep into other muscles or things that are the real culprits. The famous Lib from chat-H and healthboards remained with rumbling post-op despite saving her ass by eliminating sound sensitivity. @Nowhearthis had objective externally recordeable thumps and high pitched ''tinnitus'' not so loud that it could be listened to externally unlike the Brazilian case study from 20 years ago it seems but it went away with the cut too, so maybe the community should get used to this notion that some of us could just have smaller variations of this as it's highly suspicious that according to conventional wisdom a nerve fiber would be creating the same sound as a confirmed muscle. However, it's true that the muscle could have created a hearing loss and not be creating the sound itself ok I get that, but still, it would be an example of how muscles create fake hearing loss.

And absolutely it could work and serve as an indicator and maybe one day I'll stop acting like a petrified mongoose and do it I dunno. If anyone goes forward tell us your experience...

 

[PaulBe]

I think one fear is that, if done badly it could paralyze some pretty important facial muscles. I guess the seep theory is underlined by the fear of paralyzing muscles that protect the airway. I wouldn't fancy three months on a ventilator with a tracheostomy until the Botox wore off. Japongus I get the impression that Sismanis didn't really know much about the whys of what he was doing.

 

[japongus]

The Sismanis experience was short on expectations on many levels, despite the copious amounts of literature to his name. It's a pity he wouldn't even tell me the reason for tympanography inconclusiveness by email as I'd forgotten to get it outta him in person, it'd take him 1 minute. Maybe he doesn't care or as a rule doesn't talk to patients, he claims success but how could that be reliable if he doesn't specify to me he's retiring while telling me to go on amitriptyline and stay in contact, but to be fair I wasn't sure and wouldn't have done the operation not now, plus I was dithering all the time about going forward with it and asking superfluous questions.

I spent a ton of time only to inexplicably not take notes into his office, which I always do to get information out of doctors otherwise I lose track as they speak they make my ears vibrate, and I also spoke too much, too nervous and tired that day to focus that I was actually there to examine him. Still he and a few other doctors have clearly put a dagger in the main Jastreboff kinda narrative, whether its by accident or not.

On the positive side, we now have another doctor claiming tympanography isn't conclusive, Harold Kim from Portland, let's hope he's not a lunatic living in the Cascadia fault line for fun and giggles then.

Btw, Vasilia from chat-h reports autophony from surgery with him, but did consider him saving her life. Another thing that botox risks is autophony, which is a pretty brutal condition, but I think and don't quote me on it it would in theory only last the 3 months or so that botox works for. And maybe the tensor tympani is the one involved in autophony not sure.

 

[PaulBe]

How long has Vasilia been out of surgery?

 

[japongus]

Years. I can ask her if she wouldn't mind I paste her testimony here. I think I'm closer to astrid's than to vasilia's symptoms though.

1 ear, she was very happy with it but doubting about doing the second ear due to autophony in the first. Maybe the second ear wasn't a serious a case.

 

[PaulBe]

If she doesn't mind, that would be interesting.

 

[japongus]

vasia nikolopoulou ie vasilia from chat-h

the issue began a night while i was sleeping. A sound like a bee flying in my left ear began! it was like " tr tr tr". it stopped after a while but since then, occasionally, while i was speaking i heard o tick tick sound in my ear synchronised with my voice or others' voices.In addition, this flying sound was "coming and living after a day or two o three". Once i put my finger in my ear it stopped but if i put it out i could still hear th "bee flying". That sound as i told you was not permanent.
After 2 or 3 years these sounds became more permanent and that stressed me! The stress made my symptoms more severe and permanent..In addition another type of sound began both in my left and right ear.. it was sound sensitivity combined with a sound like "chrrrrrrr". This sound was permanent. I could hear it while i was talking or while other people were talking, espesially if i were in a silent place...
Time after time the problem was becoming more and more severe.. i had sound sensitivity in many sounds but especially in sharp noises (high pithced) like plates or coins.. even the sound of the keyboard was annoying for me or the zipper of my jacket.

After surgery( in my left ear) sound sensitivity and this "chrrrrrr" sound left. the "flying bee" left after a year.. but is was much lower till then.
Now this ear is free symptom just like Libby is free symptoms.. i don't know any other of Dr. Sismanis patients..
It was under total anesthesia.. it is really difficult to cooperate with the doctor under local anesthesia.. and a tinny movement can be dangerous.
After surgery i had hyperacousis for almost a monthe but that is normal.. in evere ear procedure.
I need to wear earplug when i go in a place with very loud noise but that is not a problem for me..
If you decide to do the surgery i will tell you what you have to expect.. dont worry this part is just for a few monthes..
Dr Sismanis didn't see my eardrum moving or heard any noise.. he diagnosed the problem through my description..
Now i Have the "chrrrrr "sound only in my right ear that i still haven't decided to perform tha procedure! I am much better and i have almost forgotten it..

If i didn't reply to anyof your questions write me back to answer you whatever you want!

Don't worry you are not alone and there is hope as there is solution!

Dr Sismanis did multiple tests but as i told you he neither see or heard any sound or reflex or moving! he used otoscope and other tests but my ear seemed to be as any other ear with no tinnitus or sound sensitivity..
But i have to tell you that two years after surgery i started having auto-phony problems.. it may be because of the surgey.. (maybe yes maybe no.. nobobdy knows for sure..). Ask your doctor if that could be related to surgery or not.. so before you take an decision to be sure about the possibility of having side effects..
For me this is the only problem that i have now in this ear..
.Concernig my other ear i have yet not decided what to do because i am afraid of the autophony syndrome. But probably i am the only patient that had this side effect that it may not be because ot the surgery..

Not completely sure chrrr means continuous. If you vocalise it it's too much of a beat to the letter r, so that's nearly but not quite rumbling/roaring/distant ocean/vibration others have. I'll ask her. I've also had very strong tympanic membrane vibrations but I've had them so rarely it's led me to believe my other rumbles, vibration and rattle may have nothing to do with it, at least with the tensor tympani.

 

[PaulBe]

Thanks Japongus. That is interesting. I don't quite get what the CHRRRRR is about either, but the bee I certainly get. Interesting too that Sismanis relied on clinical history taking. That's a fading skill in this day of reliance on diagnostic technology, and criteria driven disease identification. It would also help explain any fails he had, because accurate history taking is bloody hard work and requires a lot of careful questioning and critical thinking, and even the best of patients can fall into the trap of being led by the questions.

 

[japongus]

Do you think by bee she means one bee, ie irregular and oscillating but continuous? Or bee like beehive continuous...

And by Sismanis and ''the fails he had'', what do you mean? He definitely said possible myoclonus to me and he told me the only way to get rid of my condition was tenotomy, but then he just went weird, making neutral statements on what H and M are, as if he couldn't be sure what I had, just like I'm not sure. But maybe he just didn't give a crap and seeing how indecisive I was, just brushed me off. Or maybe he's just retiring and I didn't ask the right questions.

 

[PaulBe]

Oh, I'm sort of assuming that he would have to have some that didn't go well, simply because a lot of what you've said suggests to me that he operates to a large extent on educated guesswork based on a good clinical history, which, given the current state of play means he would have little choice but to do so. I said "any" fails he had (should have said "may have had"), and he must have had some if that's indeed how he approaches things. Its not a criticism of him, more an observation of how I think things must be. Maybe because of your own admitted indecision he did indeed brush you off because he would probably look for clear, certain cues before making a commitment. I don't know of course, but were I him that's what I would do.

As to the bee. Sometimes we seem to have such a chorus of sounds that it becomes easy to interpret some those sounds in terms of the last thing you read on a forum. That said, such things could ultimately lead us to a common language of description, which we desperately need. If we had that we could actually give form and shape to this otherwise scatter-gun condition.

 

[japongus]

In person when I tried to see how much he knew, he deferred to Lib as ''the expert in myoclonus''. Another thing was that last year he asked Lib how she was doing and what her symptoms had been because he wanted to keep learning and Lib told me she and him were writing a paper on it, ''I kid you not'' she added. Not sure about that now. Maybe they got frightened by the WW1 like bogged in the trenches breadth of this topic, or maybe Sismanis is just scared of getting sued by patients like so many american doctors I assume. Who knows.

Lib also seemed sure I didn't have real hyperacusis. And here I am a year later uncertain if I do, as from reading Trashboat or Astrid, I could have real H that actually gets protected by those muscles or a mixture of other walls and muscles and they go on to sooth the sound after the startle is through, which would be radically different. Maybe I should ask Lib about publishing our conversations...

Another thing that might have happened is that the only negative reports are the ones I brought to the table, in the sense that though he said few words he did say that ''in my experience it was very effective procedure''. Of course we don't know how far that goes right now. Lib went so far as to say that Astrid's had just been done improperly and trashboat was having pressure sensitivity after his op, almost as if they'd broken the oval window while doing the tenotomy, which btw is something another MD Roya Azadarmaki wrote in a recent paper that could go wrong if it's torn off. But again no one is sure right now, brighter7 told me Lib may be overdiagnosing.

 

[PaulBe]

You know I've always harbored the suspicion that Astrid was more a victim of poor technique than misdiagnosis.

 

[Sthii]

@Chelles Hi Chelles. Did you find any relief ? Please let me know what worked for you ear fluttering ? I recently got the diagnosis and feeling lost already

 

[Mishal Almutairi]

Hi guys any updates on this condition? Any doctors who can fix this? Are you all ok?

@Chelles can you reply and let me know if you went forward with anything? Best

 

[ShellyW]

Hello. Does anyone have any updates please where boxtox or steroid injections are offered for middle ear myclonus in Europe? (Germany, Uk - anywhere....?) On the hunt! thankyou

 

[ShellyW]

@Mishal how did you go asking your doctor / neurologist about Carbamazepine / Tegretol? It takes a while to gradually increase the dosage.

 

[Contrast]

I have read about botox injections into stapedius or tensor tympani on the internet, but so far I can't find any ENT or other doctor that performs this.

I have sent numerous emails to ENT's in Belgium, Holland, and Germany without any luck.

If anyone knows of an ENT or other medical specialist that performs this pls let me know.

Do you have any experience with this yourself then also pls let me know!

interesting

 

[Greg Sacramento]

@ShellyW I hope that you find someone with experience. You may need treatment every few months. This is much safer than surgery as the facial nerve can get damaged.