Ear, Nose & Throat Community
13.5k Members
Avatar universal

tensor tympani mycoclonus in both ears

I am a graduate of biochemistry in a good University in Canada so please don't hesitate to use your own jargon if necessary. Back in 2002, I had a strong hit with a full palm on my left ear. I did not encounter immediate hearing loss. However I became sensitive(in the sens of pain) to change of pressure, whether encountering a higher pressure, like going deep underwater, or a lower pressure (airplane or elevator going up). I have seen many regular physicians who at first sight said that I had nothing since their otoscope indicated a full tympanic membrane with no holes. In 2007, I started to develop tensor tympani myoclonus in the left ear, usually due to a lowering of pressure. It will be triggered by swallowing, by hip cups, yawning which all somehow creates lower pressure in the eustachian tube, as well as hot summer july day which have lower atmospheric pressure, and airplanes.  I should point out that  this is not palatal mycoclonus.

What is tympanic tensor myoclonus?

I am going  to explain tensor  tympani myoclonus as I understand it in my case; if you think there is any mistake in my reasoning please let me know. this reflex is activated when the tensor tympani muscle is overstreteched in my case; this overstreching is abnormal and due to  unwanted force exerted on it by the malleus via the  bone ossicular chain, which might have a dislocation in it . When the muscle become to stretch, the autonomous nervous system kicks in as it does for any overstreched muscles or any overcontracted muscle and send an antagonist nervous signal which result in contraction or stretching, respectively. However, in the case of the tensor tympani muscle, there are mobile bones attach to it (incus, stapedius, via the malleus). So if the muscle contract like a rubber band attached to two nails that is relased after being stretched, it's going to vibrate. The the mobile bones atttach to it will move along with it; which explain this "hearbeat" sound associated with tympani tensor myoclonus, which is in essence the sound of "bone vibration" in the absence of any passing air wave.  

In January 2008,  I started to develop tensor tympani myoclonus in the right ear. However I have never had any physical assault or mechanical accident whatsover with this ear. What seems to happen is that my autonomous nervous system  "recorrects itself"  by sending a nervous signal whenever there is a  very small change of pressure in the right ear even though the right ear tensor tympani muscle isn not overstreched cause the right ear has no mechanical damage . In other words, the autonomous nervous system seems to "model" itself on the left ear low pressure treschold, and I should say that this happens involuntarily; I don't have any self-control or conscious ability  to stop that, other than by not taking the elevators.

Why is the left tensor tympani muscle overstreched?

Quick answer; my accident in 2002;
tehcnical answer; since I had an audiology test recently which gave relatively good result, I suspect that I have a dislocation of the incus(there has been documented research on people who have  less than 10 decibel air gap with incus dislocation ). Maybe a 60 degree rotation or so , with the the incus still perfectly attach to the
malleus and the stapedius joint (that's why i can still hear),but with the long process pointing obliquely underneat the malleus handle( that's why I can't sustain pressure variation).
Since 2002, my left  ear never has never cleared like the right one; there is an "obstacle"  in the air path of the middle ear. This is why whenever I clear my left middle ear, I have to put more pressure so that the air can eventually "circumvent" that obstacle and make is way through  the tympanic membrane in the outer hear. That tells me , that something is stuck there, cause it is always stuck 24 hours 7 days a week 365 days a year. It is there, I can sens it and I don't think it is the fruit of my imagination. One of the bones is not rightly located, and air goes around and flow to the original position of the bone which has now vacant.  This is why I always need quite a lot more pressure to clear my left ear.

What are the solutions.

I do think in my case that there is a solution and this is why I need help from this forum. The problem with middle ear exploration is that most of the literature on the subject is about stapedioectomy or removal of the bones, or complete ossicular chain reconstruction, or prosthesis. I don't  think that my case is so grave (well not yet). but I found it quite astonishing that I have virtually found nothing in ear nose throat literature on tympanoplasty and incus repositioning in a non invasive or non replacement manner. Is there any ways to simply do a tympanoplasty , and gently but the incus back into its original position? Why is this never discussed? Is it because the incus-malleus joint is too fragile and could break apart? I understand the latter often happen when surgeon peform a stapedioectomy so I susepct that might be the main reason. However it happens after the stapedius has been vaporized. In my case the incus is still attached to the stapedius while the incus would be repositioned.

But neverheless, do you know of any ear nose throat or surgeon who have been known to repositioning the incus via tympanoplasty without replacement of the bones? I know for sure that this has already been done successfully in the past as I have read it in ear nose throat books, but it seems that this procedure has been complelty banned today.

Well, if you know a person who is known that have done this on several occasion, please let me know.
If you know of researchers or academic who are doing CT and research on the topic , I would be ready to be volunteer.

In the meantime, I am now having a constant sens of dryness and stickiness in the ear, and feeling of hair like strucure
brushing on a surface, first in the left ear, now spreading to the right hear. I suspect that my hair cells start to be damaged too. And I don't know what is going to be the next steps, but every 2 to 3 months bring a new surprise.

Please I need your feedback don't hesitate to correct me on my analysis, I am not a ENT expert. And if you have any comment, suggestion or advice, write them on the forum, thanks.

7 Responses
152264 tn?1280354657
Hi Sam, I don't have any real advice for you, except to say that (as you've probably figured out) most doctors are not interested in solving mysteries, or if they ARE interested, they don't have the time to do it.

They are interested in relieving severe or life-altering symptoms and in fixing dangerous things, then sending you on your way. That's it.

We can come up with all kinds of theories for our own mysteries (of which I have quite a few), and a doctor might listen to them, but explanations, speculations, and certainly interventions for (what seem to them) relatively minor things that don't threaten life, limb, eyesight, hearing, or other important functions are highly unlikely to be undertaken.

Have you tried writing to doctors at some of the more well-known ear institutes, e.g., "Mass Eye & Ear" or the House Ear Clinic in LA?

One of my mysteries is paroxysmal episodes of clicking in my left ear simultaneous with jabs of pressure/pain on the prominent bone behind the ear, episodes that last usually 5-30 seconds. I developed this (along with a whole raft of strange neurological and ENT symptoms) after a sudden severe hearing loss in that ear when I sneezed hard.

I mentioned these clicking/pain episodes to an oto-neurologist, the biggest type of specialist at the intersection of neurology and ENT, and he just shrugged and said "I don't know what that is." Of course he had already been seeing me for countless other symptoms--dizziness, hearing loss, paresthesias, and some things suggestive of MS--and he had already begun to conclude I was a hypochondriac. I also mentioned these episodes to some other ear specialists, but no one was interested or had anything to say about them.

Nor about the episodes of benign positional vertigo in which the nystagmus was accompanied by apparent stapedial spasms in the OPPOSITE ear, which seems to be unheard-of in BPPV.

My theory is that this is all some bad wiring in my brainstem, which seems plausible since my auditory evoked potentials are highly abnormal bilaterally, even though my hearing is perfect in my right ear.

I am not an expert in this area or even a scientist, but my understanding is that some of the reflexes involving the ear cross over in the brainstem--for example the acoustic reflex; a loud sound in one ear causes the protective reflex to occur in both ears, if I have that right.

You may not ever find a resolution to this. I have had mysterious symptoms for 10 years and am no closer to finding answers (although I gave up trying years ago!). But good luck in your attempts. You never know.

Have you read about inner ear concussion (which some ENT docs subscribe to, e.g., the famous Dr. Epley)? As you probably know, the inner ear is very sensitive to damage, and can develop secondary endolymphatic hydrops after an injury, which may make one sensitive to pressure changes.

Did you ask your audiologist about your theories?

Best wishes,

Avatar universal
One thing I would suggest is not to explain your theories to any doctor you see for this problem...they will label you obsessive immediately.....if you have theories, find a doctor who will discover them for themselves, if you had to guide a surgeon, would you feel confident in this person operating on you?

One thing I know for sure is that you will only complicate your appointments and the more doctors you visit, the harder your diagnosis and treatment will be....many doctors have a hard time knowing they are seeing a colleagues patient...and are reluctant to give any valuable input....knowing you will just be put off and move on...this has happened to me so I am giving you first hand advice....

the other issue I would address is your hearing loss....if there is none, then don't invite disaster....if you have sustained injury and are left with some sensations you cannot explain try to let that suffice...the body in general is more fragile than we think and when we age, some age quicker, some age worse, but we all age and things such as hearing,and sight change....my suggestion is to search for the best hearing aid that will allow for no more damage to be done to any nerves....I understand that a hearing aid will not reverse damage but can possibly stop damage from escalating too fast.....

hope you find a good doctor to treat your symptoms, but remember they are all human and don't know it all.....I don't think our lifetime will ever know another Einstein......
Avatar universal
Sam, I had tensor tympani syndrome and stapedial myoclonus in both ears. The problem was enough for me to go nuts. The solution. I had both the tensor tympani tendon and the stapedial muscles cut in both ears.

No more fluttering. No more problems with results of noises, changes in pressure, movement.

Cured. Seek out Dr. Wiet in Hinsdale, IL. He did my surgery. No regrets. No loss of hearing. No problems from the surgery. Only doctor who listened to me after 7 years of loser doctors telling me to not use Q-tips.
Earguy, I have a surgeon who is willing to perform the same surgery.  Have you remained clear of side effects?  Sincerely, tc
Avatar universal
i cured myself of tensor tympani muscle spasm syndrome. Plus meniere's. i was ready for surgery, i was going out of my mind. the volume of the noise i was hearing 24 hours a day 7 days a week, and the vibration was so severe it was like a bird flying against my eardrum day and night, i could barely sleep for 16 weeks. I thought my life was over. every 5-10 days it would slow down and stop for a few hours or a day before starting again. it came on during a suspected severe bout of Meniere's Disease, with loud tinnitus, blockage and dizziness. I had some hearing loss, and roaring tinnitus. then the tensor tympani muscle went into spasm. it made a noise so loud i was prescribed drugs to keep me from panicking and i couldnot sleep. i realised as you say, that the specialists just give you drugs and offer surgery and psychotherapy to deal with the noise. i tried cranial sacral therapy (this was the only thing that did help) and it seems that a misaligned jaw and teeth can contribute to the problem which i am rectifying with a plate i sleep with, massage of the tense muscles around face, neck and jaw helped, but didnt cure, magnesium oxide to help relax muscles, chinese herbs acupuncture etc. But nothing stopped the vibration and buzzing. i believed that even though i have a weakness in my left ear, some damage there (i have BPPV) there must be a reason the body was doing this. finally i saw an Ayurvedic doctor. She immediately knew what i had and told me i had a severe Vata imbalance, which often ends up in the head and ears, and if you have damage, an injury, or a historic weakness in the ENT area, it will end up there. I started on their famous treatments, medicated oil massages, (oiling the body daily and head, reduces the Vata, medicated oils sniffed up the nose and into sinuses and eustacian tubes, with steam and massage of sinuses, and internal herbal medicine, plus diet changes, and very fast, after 16 weeks of living hell, tinnitus, sleepless nights and despair, it stopped. all i can say is that i was a very severe case, and that by using a whole body approach, not just an ear approach, and getting healthy, rectifying the imbalances in your entire system, the body will heal itself. it is a horrific problem, and i dont blame anyone for having surgery, I would have eventually, but that still isnt addressing the root cause of the problem and why we got this in the first place. By the way, research shows that ear wax problems are caused by an Omega 3 and 6 deficiency so read up and address your nutrition, reduce sugar, salt, alcohol and sugar. and find an Ayurvedic practitioner (its the 5000 yr old Indian wisdom on health) good luck all.
Avatar universal
I have constant fluttering and movement in my ear and it is so bad that I have a hard time sleeping. I am now starting to get depressed. I am on Klonopin and that help but makes me very tired and depressed. I am considering the surgery. Was it painful. Did you have any symptoms or changes in your hearing?
Thanks for your help
Avatar universal
Who was the doctor that performed your ear surgery for TTS and SM?
Avatar universal
Hello. Hope you are still a member. My symptoms, of abt 20 years, are much the same as yours. Left ear. It feels like a syringe is placed in my ear and inflated and deflated. Boom, boom. Very distracting, so much that I have to leave the room if in the presence of others. Can't hear as well when it is going on. Starts with yawning, going to sleep, with a laugh, etc. Mostly in the evening.  I am a healthcare professional, have read all there is to read. Have seen many physicians, had many tests, etc. The dumbest thing a physician has said was, "The reason you can hear it better at night is because it is quiet then." And he is an ENT.

A few years ago, I discovered (being curious and willing to try pretty much anything), that a low pitched ongoing, somewhat loud sound actually STOPS the throbbing, and I feel like a new person. Examples are a sound soother, a motor, such as an exhaust fan, plain ole static on a radio, etc. Often it starts again, so I turn whatever on again and it stops. Occasionally, it takes a while, and I have to turn it up real loud.

And I have finally found a physician (neuro otologist, I think he is called) who has helped. It is a myoclonus of some sort. We started by taking oxcarbazephine 300 mg, BID. It really helped for a while, but it has come back somewhat. We will try other stuff as time goes by. Will post updates.

Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
Discover the common causes of and treatments for a sore throat.
Learn about what actually causes your temperature to spike.
Find out which foods you should watch out for.
Family medicine doctor Enoch Choi, MD helps differentiate between the common cold and more threatening (bacterial) infections
Dr. Steven Park reveals 5 reasons why breathing through your nose could change your life