Vital Signs: An Unwelcome Ringing — Magazine Article About How Doctors Cured a Guy's Ear Pain Spasms

What's your TTTS like? Is it permanent, vibratory, reacts to sound or independent of sound? Why do you think it's linked to neuralgia?

We're a bit fatherless here since Sismanis went full Mykonos on our butts. But from the experience of another forum member here, there seems to be someone with TTTS experience named Harold Kim, an ENT or neurotologist in Portland. Maybe you can try him?

 

It reacts to sound with a crunch sensation as well it flutters (pulsates really) without sound sensation.
I have atypical trigeminal neuralgia as my face jaw, ear and teeth burn, ache and tingle to some degree all day every day.

I have been seeing Natasha Pollak at Temple who has some papers on ttts/myoclonus procedures (see below)

https://www.researchgate.net/profile/Natasha_Pollak2/publications

 

What does she say?
I read two Pollak/Azadarmaki papers, one said to take care otherwise a tenotomy can cause fistula.
Do they have real world experience with this?

Harold Kim from Portland apparently told @AnxiousJon that there was no way to dx it apart from patient description, just like Sismanis. He also reportedly said it works 2 out of every 3 times because it can be the one or two tendons or it can be the palatini or something like that.

However, the link between neuropathic pain and TTTS where has that been explored?

 

Also, what is your tinnitus like?

 

Who? Did you meet them in person or what? Because online my impression is mixed. Are you including middle ear tenotomy in your definition? If you're greek, did you meet Aristides Sismanis?

Also, I think you're being way too optimistic about the reason why people drop off the forum. I think it was Nagler who said that often mvd isn't the same as tinnitus or something like that.

 

I am not even sure how to explore the neuropathic pain link with TTTS. I constant have the trigeminal neuralgia (TN) pain to some extent, and sometimes it feels like my tensor or stepedious is constant too, as if it is in constant clenched or locked.
I'm going to see Pollak again this week to discuss ttts. In my previous meetings she referred me to neurology (many times) stating that my ear is fine, and that the quality of pain that I present could never come from the ear. Very little discussion on ttts and was quick to push me off to neuro. However, I have seen about 10 other ENT'S (including Cornell, Columbia, NY Ear and Eye Infirmary) who have all done the same. It seems like they avoid even discussing or exploring a ttts procedure.
My T is a basket of noises. First the constant screeching with a subtle typewriter below the screech, the typewriter sound kind of sounds like an strange electrical noise. then I also have flutter, crunching and clicking associated with pain, likely the TTS component. I also have a palatal myoclonus, so e- tunes slap and click.
I noticed something interesting the other day upon waking; when my ear feels the most 'muffled' and painful, if I yawn, during that yawn the muffled hearing disappears, and I can hear much much better, so much so that I can barely hear my T during that yawning period.
When the yawn completes I get a 'thump' sound in my ear and it's back to muffled hearing and pain/fullness in that ear. it's like during the yawn every thing goes back to 'normal' for a that brief period. I'm trying to figure out what this means and it is most present after I wake.

 

Where is your pain located, in the ear right? Is yours acoustic trauma induced cuz I don't know of any of that to cause mvc.
Do you get thumps, crunch and flutter to external sound? How would you describe them? Lingering pain follows the sound sensitivity afterwards? To what sounds?

There are only two doctors I know of that dx TTTS and/or myoclonustonuswhatever without objective methods, and just by description. Aristides Sismanis, who is retired, and through a second hand account Harold Kim from Portland .

Either from knowledge or from a don'tgiveashit attitude. Dunno. But Sismanis is or was pretty much the go-to guide for an entire chapter of otology apparently. There he says inspection through tympanotomy is the best way, but in person told me that anesthesia could leak in during inspection. Others who dx by description only are lib and JoeM/earxplodejoe from chat-h and proboards. On chat-h astrid and trashboat were the ones that provided negative experiences.

If you do decide to fly to to Portland I'm very interested in what Kim has to say. He reportedly said it can be either the tendons vibrating or the levator palatini, that there's no way to see it conclusively despite what most docs believe.

JoeM sat in front of a doc for two minutes and 'it was moving the whole time but the doctor only saw the drum dimple once'. I'm not sure the logic for this at all, if it's because of permanent contraction or cuz the movements are too small.

From Pollak you can ask why Sismanis didn't believe in acoustic reflex testing, eardrum inspection or tympanography, tests she's probably done to see your TTTS. All Pollak and Azadarmaki have is a couple of papers on the procedure of tenotomy, like how to make it better to avoid accident fistulas. Maybe Azadarmaki is better, at least it seemed it like it from google reviews? I don't know what to say about the pain not being an ear thing, there seems to be a lot of agreement that it can cause ear pain, the disagreement is what to do about it and whether it's the tendons or not and whether they're diagnosable objectively or not.

What about considering TMJ disorders and their influence on ear issues? They can be more subtle, I'm learning from them on facebook and seeing parallels. I know how this it's like to get bogged down by one line of thinking and then find out others close by have similar issues.

 

An important talking point may be that on tonic contraction the middle ear wouldn't show anything on tympanogram, according to a paper on the subject, for example. There are clues here and there if one has the energy and concentration to search for keywords on libgen or pubmed about this. That way when I sit in front of a doctor these days I can resort to nuances they wouldn't bother with if I hadn't. So most docs will say the middle ear muscles are there for attenuation, but if you read further you find this isn't clear at all, that they could instead be involved in pressuring the stapes and cochlear pressure. By and large though no one gives us a shit about us, or mvc folk, or tmj folk, especially since we all get shipped off to the pretentious and bloated Jastreboff ''it's all in the mind'' slow train these days.

Key issues to get out of people like Pollak or Kim are how many ops they've done , exactly what symptoms their patients have complained about pre and postop, if they're not confusing sxs with patulous tube, perilymph fistula, just lack of protection from loud sounds, if they know anyone else whose interested in it etc, if tenotomy deals with tonic or clonic contractions... and other talking points

 

To add to my posts above, some even do tenotomies without thumps and crunching that I know of. There's this austrian guy called Franz who wrote a couple of academic articles titled ''Do middle ear muscle trigger menieres'' or something like that, who does it for meniere's, albeit not as a first resort but still. I managed to get him on the phone two weeks ago and he said he'd done 400 tenotomies. He also said hearing loss wasn't a risk, contrary to what most people think. Also that he had no reports of postop hyperacusis. But of course maybe they don't have the same thing as me or astrid, I could have a spasming palatini.

But his rationale for it was the way the muscles would press on the cochlea, not sure how that applies to trigeminal neuralgia. Maybe TTTS triggers neuralgia there or elsewhere?

 

This is the paper that got me thinking about tonic contraction instead of clonic contraction. It's an interesting talking point to take to most conventional ENTs. Of course since I don't have a general education in otology it's either I miss out on something or most otology teaches basics that just happen to be biased against these papers.

 

Pain is located inside my ear, jaw, and feont of face including gums and teeth, maxillary sinuses all on the right side. It is of a burning and tingling quality. It feels like someone sawed off my teeth is sticking pins in my gums, like electric fire in my face. Its every minute of every day and can easily be a 20 on a scale of 1 to 10.
Id really like to hear someone elses description of their ttts or H pain to see how it relates to mine. Does my pain even relate to H or Ttts pain? Every ent, otologist and neurotologist has said that this pain isnt from my ear. Although, pain from ttts and mvc seem to have overlap.
I do not believe that it is acoustic truama, it just started one day out of the blue.

 

@svintegrity seems o have disappeared but might have had mvc surgery with a crowd of doctors looking in and learning from the op as this link shows

@skoupidis as you know tried to do something similar but local doctors didn't want to look into his case.

@lymebite might be covering the neuropathic angle.

And if it's spreading down the jaw you might find similar patients in the TMJ facebook groups.

Also, recently I found a thread on another forum that claimed to solve hyperacusis with botox. Since then it was a big let down because the person claimed a clinic did it and I phoned the clinic and they said they didn't. The person was a total bitch about releasing information, after claiming her H was seen on an MRI, and citing bullshit concerns about privacy for not wanting to release the name of the doctor involved. In the worst case she was lying and in the best maybe she was talking about mvc instead. Also I read up on botox often causing tinnitus. But I might have read elsewhere of botox used for myofascial neuropathic pain, not sure.

 

Also seems like botox may be used for TMJ. Off label. This is all a mess.