Stapedial Myoclonus Triggered by Voice
- Thread starter Jokko
- Start date
MemberMyoclonus: Myo = muscle, clonus = spasm. TTTS is a myoclonus. Its a spasming muscle, the Tensor Tympani (hence Tonic Tensor Tympani Syndrome). The Stapedius muscle also spasms in similar circumstances but due to its different function and attachment it creates somewhat different symptoms. Collectively the condition is called middle-ear myoclonus. There exists surgical options for intractable cases. Google from there.
@Jokko how long have you had these symptoms?
Check out this thread. I am not cured but I'm doing better then I was.
https://www.tinnitustalk.com/thread...e-and-tensor-tympani-surgery.3924/#post-98624
Check out this thread. I am not cured but I'm doing better then I was.
https://www.tinnitustalk.com/thread...e-and-tensor-tympani-surgery.3924/#post-98624
I would give it some time. It's very early yet for you to try anything drastic. It could just go away on its own but maybe try some of the things in the link I gave. Hope things get better man.
Yes of course there are moments that go away for yourself for 2-3 hours that's amazing but after return
Its not easy to find much information about the surgical cutting options, and even harder to find decent follow-up papers, which I think is what we most need to see. There are some threads here worth finding that cover some of this information, but overall it doesn't get the attention you'd expect if it was really the cure-all some tout it as. it comes with risks obviously. There is another treatment called Oval Window re-enforcement that someone has been trying in the US. He appeared to have some success with a small group of patients (that was more to do with hyperacusis specifically) but again, waiting on follow-up over time. I believe he was trying to find a larger patient cohort to work with but I've heard no more lately. It covered in a thread here somewhere.
Do you think there is a possibility this could be SCDS? That reacts to your own voice among other things.
@cullenbohannon tts isn't a serious sindrome it's a bit annoyng sindrome that's why many ENTs don't want perform a irreversible surgery to treat it, but maybe there are alternative to treat it. With a farmacological approach or maybe will heal over the time for yourself
What about oval reinforcement it's usefull too for tts?
It involves taking a pad of fat and placing it around the oval window where it interfaces with the stapes. I think it works like an insulator so it doesn't address the cause but it may provide symptomatic relief, but finding someone able to properly assess you for it is but the first challenge. I only know of a small series of patients from one Clinic and I know of no long-term follow-up.
Sorry Jokko, I should have said: this is about treating hyperacusis primarily. Now, whether TTTS is being driven by the presence of hyperacusis, then I don't know how helpful it would be. If you could control/reduce H then would TTTS ultimately settle itself? I don't know. I saw Myriam Westcott, who CullenB references above and her practice is very directed toward TTTS/Middle Ear Myoclonus management and they were quite focused on autonomic retraining (using TRT priniciples). I guess a lot depends on whether you believe MEM causes (or exacerbates) hyperacusis or H causes MEM. So far I am convinced by neither view. I know of at least one individual here (in Australia) who claimed a cure from Stapedial tenotomy for his hyperacusis, and a large swathe of his tinnitus. Mind you he had to go to America because Seeing an ENT for ear symptoms in Australia is about as useful as seeing an Obstetrician for a sore foot.
@PaulBe I don't have hyperacusis and only mild hearing loss. The main symptom is that main eardrum vibrating a littelbit when a sound impact with it for this reason I think no one will perform a surgery (tenetomy) on my ears even in USA. I think my condition is permanent!
Only a trembling no pressure
IT'S very annoyng this simptom!! Helppppppppppp
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
I had random ear muscle spasms for a year, they are gone, however I still have my left ear fluttering around with any sudden noise, even the click of a light switch makes it jump, it really hurts. I thought it was just part of H, maybe not. I talk with a very low smooth voice as this can cause the situation to get out of control, or I just refrain from speaking all together.
What an affliction this is...not only does it rob you of your quiet, but it also turns you into a bloody hermit.
Mine is similar to yours Jokko. Its in my left. I'm not sure its actually the eardrum, but I too can move my Eustachian tube which gives off a sickly, almost bony-sounding crunch. Sound becomes impossible many days when this is prevalent, particularly short sharp, high sounds like a light switch or even the press of computer keys. Some papers I've seen associate it with stapedial myoclonus, others just call it part of hyperacusis (which itself is a symptom, not a diagnosis as many seem to think).
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
I found stretching stopped mine from randomly going off. Just happens when I hear sound now, part of my H I guess.
Funny how some say I can live with anything but T or anything but H or anything but myoclonus...I feel genuinely sorry for people who have all 3 in severe form, as I find it hard to live with just 1 thing, my T.
I meant 3 in severe form, but yes I also have crackling sound, I had it since I was born, its not so bad because it only crackles when I swallow.
- Jan 25, 2013
- 3,576
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
canyonero
Member
My ear rings like a subwoofer when I talk sometimes. Stapedial Myoclonus is not as bad as T bud it does get annoying sometimes.
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
Drink more water, its just mucus build up sticking to the tubes,no biggie. If it doesn't go away it's probably normal, I've had it all my life like most people.
- Jun 26, 2014
- 2,264
- Tinnitus Since
- 11/2013
- Cause of Tinnitus
- Drugs barotrauma
yes they can cure that with tuboplasty or laser surgery but only specialized ENTs not every ENTs is able to do something like this...
In europe there is only one ENT that is able to repair that and is very expensive is not for all, I'm lucky why I have the assurance and i pay only the 20% ot the treatment...
anyway all is risky too drive a car is risky you can die easily or with a motorbike is very riski
Yes is warm where I live
