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.
