Myoclonus of the Middle Ear, Stapedius Muscle and Tensor Tympani Surgery

Discussion in 'Support' started by cullenbohannon, Mar 12, 2014.

tinnitus forum
    1. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      I've been looking into myoclonus of the middle ear and there is a lot of literature about it and how it can cause tinnitus. I know there is a surgery where they cut the muscle so it cant contract and spasm. I wonder if that would improve some people's tinnitus. A lot of times when this is the cause it is objective tinnitus but I think it could be subjective tinnitus as well. Does anyone have any ideas about this?

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3629860/

      http://www.ncbi.nlm.nih.gov/pubmed/12841170
      http://www.tinnitusjournal.com/detalhe_artigo.asp?id=143
      http://www.tinnitusjournal.com/detalhe_artigo.asp?id=146
       
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    2. DinaS

      DinaS Member

      Location:
      New England
      Tinnitus Since:
      2011
      Cause of Tinnitus:
      Unknown
      I've had TTS and the surgery for it. Very unpleasant to go through surgery of the ear but it's not very painful. It does work but there are risks. A Neurotologist would be the best doctor to see if you suffer from TTS.
       
    3. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I've seen it referenced as treating hyperacusis.
       
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    4. moshe mitrani

      moshe mitrani Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      myoclonus
      I have had the surgery 4 months ago and the two little muscles were cut. Unfortunately so far the problem is continuing . I was told that the success average of this kind of surgery is %90 but it seems that there are other reasons causing the problem then the two muscles. May be I should wait a bit more to see what happens.
       
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    5. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Did you ever get a confirmed diagnosis to justify the surgery or was it a bit of a gamble? What investigations did you get? I think this a potentially important but still poorly understood area of research.
       
    6. Poyraz

      Poyraz Member

      Tinnitus Since:
      February 2016
      Cause of Tinnitus:
      Benzos, Stress, Anxiety, Loud Music, Jaw Problems. Who knows
      My T sounds like air escaping from my left ear. It is not tonal. Is it available for my T? Sorry I'm not good at English so it is hard to understand the cases in the links.
       
    7. japongus

      japongus Member

      Tinnitus Since:
      1998
      who operated you? did your have any kind of sound sensitivity? what frequency is or was your tinnitus and was it continuous or discontinuous?
       
    8. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Moshe? If you're reading this still, can you tell us exactly what it was about your situation that convinced someone that this surgery could help? Was it something seen, identified, measured? Was it a clinical description? Was it simply guesswork? Anything you can tell us please about the indication for surgery?

      And yes, my all too limited (currently) understanding says that you still need to wait it out a while.
       
    9. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      I was about to tag you in this thread Japongus, I thought you would be interested in this. But you quoted the wrong person. You meant to ask @moshe mitrani
       
    10. japongus

      japongus Member

      Tinnitus Since:
      1998
      good point thanks

      who operated you? did your have any kind of sound sensitivity? what frequency is or was your tinnitus and was it continuous or discontinuous?
       
    11. Sueloe

      Sueloe Member

      Location:
      Norway
      Tinnitus Since:
      October 2015
      Cause of Tinnitus:
      Don't know...
      Hi.

      I'm new here, my first post :)

      I have been suffering from a vibrating sensation since October, followed by sounds lateley. Getting worse and worse, and the vibration is 24 hours a day.

      Been struggling with 3 different ENT's that couldn't find anything wrong, and diagnosed me with Tinnitus. Then I found an ear surgeon that took more tests, and he could see that my Stapedius muscle was vibrating. I also have problems with my ear drum it seems. I'm going to take CT scan and a MRI, and I will then be on a waiting list for surgery.

      I wanted to ask if there is anyone that has had this surgery, and if there are any negative side affects and if it has helped you cutting the muscle?
       
    12. Hdun97
      Stressed

      Hdun97 Member

      Location:
      UK
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      Suspected tensor tympani myoclonus
      I'm in a pretty much the same situation! Mine started in December, and the doctors I've seen have found nothing, although one mentioned I may have myoclonus but advised strongly against this surgery... I'm definitely apprehensive about any kind of surgical procedure in the ear but they tested my ears & found my startle reflex (stapedius/tensor tympani) wasn't working anyway, so I don't know. Maybe it would be worth looking into.

      How do you cope with it day to day?
       
    13. Sueloe

      Sueloe Member

      Location:
      Norway
      Tinnitus Since:
      October 2015
      Cause of Tinnitus:
      Don't know...
      I have heard about people taking this surgery with good result, and I see it as my last resort to get rid of the vibration.

      I work full time, but it's diffciult to cope with it, I am tired most of the time, but try to live normally. I might have tinnitus including the vibration, but I think the stapedius also make sounds, so hopefully some of them will go away.
       
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    14. Nowhearthis

      Nowhearthis Member

      Tinnitus Since:
      2007
      Cause of Tinnitus:
      MEM
      Had the surgery four weeks ago. I am happy with outcome so far. My ears were in bad bad shape. The mucles were not protecting my ears from loud sound so any noise (sometimes just on its own without noise), movement, change in pressure would trigger the deep painful spasms /thumps for hours and hours...madness. I am still healing and hope the high pitch T doesn't get worse but far far better than before. The thumping and frequency has indeed minimized greatly despite the other ear in need of same procedure. Will schedule the other ear in a few weeks. .cant wait. I am grateful for the relief thus far.
       
    15. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
    16. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
      Did you also have hyperacusis along with these spasms?
       
    17. Nowhearthis

      Nowhearthis Member

      Tinnitus Since:
      2007
      Cause of Tinnitus:
      MEM
      I did not have hyperacusis officially but the myoclonus was so severe in both ears from tensor tampani and stapedial tendons, my ears became sensitive to sound. I also suffer with a little bit of T. My neurotologist examined my ears and confirmed TTS once he saw the ear drums dimple. MRI came back clean. Prescribed anti seizure drugs to no avail. Then opted to cut the muscles. It took me several years to find a doctor familiar with this disorder and experience performing the procedure. I ve sufferef for nearly eight long painful years. Seriously, more and more people are reporting having TTS symptoms. Whats going on on with the central nervous system a
       
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    18. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      An interesting thing I thought about. Magnesium and Clonazepam figure a lot in discussions of treatments for tinnitus, and both have a certain amount of effectiveness attributed to them. Now both are also used in conventional medicine for a number of things among which is controlling muscle spasm and promoting muscle relaxation. I've been hitting the Mag hard lately and things have quietened down somewhat since (on and off). How much tinnitus is really muscle spasm, and how much is nervous system driven? I've felt for a while that I have two sources of tinnitus sounds, and one of them which is more intermittent always brings sound distortion while the other doesn't.
       
    19. Sueloe

      Sueloe Member

      Location:
      Norway
      Tinnitus Since:
      October 2015
      Cause of Tinnitus:
      Don't know...
      It's great to hear that you have some relief. I have a high pitched sound too, hopefully this will get better. As soon as I get up in the morning and start my daily routine, this sound reacts to water and etc. Why? Is this hyperacusis?
       
    20. Nowhearthis

      Nowhearthis Member

      Tinnitus Since:
      2007
      Cause of Tinnitus:
      MEM
      Don't know enough about hyperacusis to provide an answer. All I know is my myo started first thing in the morning once my eyes opened. It would thump constantly stopping only a few seconds at a time. I had to stop taking important health medications because symptoms got worse after taking them. Driving triggered symptoms, moving around, outside noise/sounds..you name it. Each day was a new adventure of sorts. I was a mess. The T I believe is a result of the myo/TTS. The muscles are so tight causing middle and inner ear dysfunction, nothing worked as it once did. After the surgery, T got louder but is/has simmered down a bit. Paulbe's post above makes an interesting point about T and the nervous system. For me the sound distortion T is the myo. Got relief from this in one ear. Working on correcting the other ear.
       
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    21. moshe mitrani

      moshe mitrani Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      myoclonus
      Now 2 months after above post the situation is much much better, I stopped taking all the medicines (were Epilepsy related medicines thos helped me before having the surgery but continued to take them after the surgery ), I am having acupuncture care for the last three weeks (aimed to calm the nervous system) the noices almost dissepeared. I feel much better. I have the feeling that the surgery (it is simple but to be done by a senior surgent in this field) and the acupuncture sessions were a win win situation for my case.
       
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    22. japongus

      japongus Member

      Tinnitus Since:
      1998

      Interesting. Just this week I was reading trashboat's discussion about this with brighter7 on chat-hyperacusis and things are just getting less clear to me. What do you mean by sound distortion? Can you describe your sound sensitivity to me please before and after the operation? Did you have tinnitus, what kind, and did you have rumbling and did any of it disappear or appear with the operation?

      You say sound would trigger your myo, and the myo was triggered even by waking up and it would go on for hours and hours. Are these thumps by any chance more felt than heard for you or the other way around?
       
    23. japongus

      japongus Member

      Tinnitus Since:
      1998
      Thanks for the input.

      Can you tell me if you had high pitched tinnitus and/or rumbling before and after the surgery?

      What about those noises you heard, was there any muscular component to them, did you also feel them as muscular pulls?

      And even if you felt them, was their noisiness a lot noisier than the feel of the muscle? Unlike, possibly people with hyperacusis?

      Were they provoked by anything and did they carry on on their own, or were they provoked by external sound, maybe only external sound?
       
    24. Nowhearthis

      Nowhearthis Member

      Tinnitus Since:
      2007
      Cause of Tinnitus:
      MEM
      Well do my best to explain. The thumps/spasms were so bad it was felt and heard (subjective tinnitus). I felt my ear drumb moving all the time. Sometime with a feeling of fluid in the ear so it crackled, popped, snapped. The thumps would often morph into one long continuous note/thump with no break distoring my hearing terribly. My ears would hurt or become sensitive from certain sounds because the tendons were not protecting them anymore. Both ears would go crazy for hours. After surgery the thumping in that ear stopped and hearing/noise not an issue like before. The other ear still thumps/crackles and emits a high pitch ring. I feel and hear the thumps equally. Surgery scheduled on the second ear in two weeks.
       
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    25. japongus

      japongus Member

      Tinnitus Since:
      1998
      So felt and heard by yourself but by no others, correct? Because that's subjective tinnitus.

      The problem I see is you seem to have had merely tensor tympani syndrome if you felt your ear drum move. Did a doctor see it move? Because that is usually the way that kind myo is detected. And even if it can't be heard then it becomes objective tinnitus. Did you leave the stapedius intact? Do you have autophony as a result of the op? A patient who considered her life saved by this op told me autophony was an unfortunate side effect of TT cut was autophony. But others haven't mentioned it.

      I'm looking for something deeper for myself, a form of myo that can only be suspected, because that's what a doctor that's been involved in tenotomies told me and then this kind of op becomes a higher risk for my kind.

      When you say it was felt and heard, did it feel like a speaker or a blown speaker when it turns into vibratory mode? And your distortion was it the same as this vibration? Was it not so loud that in most situations it was drowned out by the external sound but still immensely bothersome, and it could only be heard when the external sound was fairly quiet but dry enough you could hear a thump due to a sort of latency that it takes to occur? Or were the thumps mega loud?

      Who did your operation? You're saying the high pitched tinnitus in your operated ear disappeared but remains in the unoperated ear? What about the rumbling, has it gone for good?
       
    26. japongus

      japongus Member

      Tinnitus Since:
      1998
      This is very interesting to me and us as you can see as we're starved for info, so I'm sorry about this barrage of questions. It's interesting you seem to have components of two types of myo, or that maybe you had true myo only because even though initially provoked by sound your myo would continue for hours without sound provocation. Was it especially distorted when your thump/note blended into a continuous phase, did you have bigger thumps going on to sound when there was a background note? Or was the distortion always there and you only had one layer of thumps?
       
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    27. Nowhearthis

      Nowhearthis Member

      Tinnitus Since:
      2007
      Cause of Tinnitus:
      MEM
      My dr. saw the ear drums dimple to confirm myo. Both tendons were cut. When the thumps morphed in a continuous tone it sound like a broken speaker with static and pressure. The pressure feeling I suspect is/was the sensation of the muscles being pulled so hard and tight. It made it difficult to hear anything for the duration. Maybe the tinnitus can be heard by others I never asked anyone to listen.
      The noise induced thumps are heavier more frequent with so many sounds in the city hitting my ears constantly at once. Hearing was/is compromised as the ears - both ears - thumped. Although the thumps would be equally severe without any noise often too. No I do not suffer from autophony. The operated ear is much better. I feel movement but no heavy thumps/spasms. Triggers that set off my bad ear, dont effect the other. The yawning, burping triggers are gone for the most part. I pray the second surgery will remedy these left over symptoms.
      What have you been told by your dr to suggest your myo is a unique case?
       
    28. japongus

      japongus Member

      Tinnitus Since:
      1998
      The only doctor who said possible myoclonus to me was a greek one who's written a lot about pulsatile tinnitus but nothing about myoclonus, Aristides Sismanis. But that was after I found others online that had been treated by him and recommended him to me. He did it without seeing anything on the eardrum and didn't feel the need to look at a tympanogram. All other doctors say they need either or both to prove myo. I've also spoken to various patients that had success and they say my condition is very similar if not the same. But I didn't have the balls to go forward with it after reading Astrid's and Trashboat's experiences on chat-hyperacusis. Your case is more straightforward than mine in the sense that dimples on your eardrum were seen. And even though in the very little literature about this subject there's a reference to how hard it could be to actually see those dimples, I would say mine is more a scary condition, especially after reading Trashboat complain post-op of hollow sounds and augmented thumps and changes in atmospheric pressure and sea level worsenings of hyperacusis and dizziness that seem reminiscent of a perilymph fistula or something that led me to believe that the whole internal wall of the middle ear could be involved in some screwed up manner, not just the muscle. Mostly it's the lack of interest from experts and the lack of contact with people that may know and might care enough in the profession to theorise and talk about this condition.

      Who operated on you if I may ask? And did he only go for the tensor, not the stapedial, after only seeing your eardrum dimple?
       
    29. Chelles
      Balanced

      Chelles Member Benefactor

      Tinnitus Since:
      04/2011
      @japongus what are your symptoms? I have myoclonus however it was diagnosed based on symptoms because the doctor cant see the muscles unless they cut your eardrum. My spasms are a loud thump that usually comes w every yawn, burp, hiccup or sometimes it can happen by itself. I hear the spasms and def feel them. They can last from hours to days and after a bad episode my ear feels like its being pulled and very sore. Im thinking of getting the surgery what are the negative things youve heard about the surgery?
       
    30. japongus

      japongus Member

      Tinnitus Since:
      1998
      My symptoms are much more linked to external (or internal) sound, whatever sound gets into the middle ear that is. My myo doesn't go off by itself in thumps like so many others do, like yours does and so on, which is why I've been the last 10 months in such a terrible limbo of doubt.

      But and a big but though, I have high pitched tinnitus and low pitched rumbling. It's possible that the latter is cochlear hydrops, maybe that both are. But it's also possible either or both could be a thumping middle ear muscle that's just vibrating too fast to be perceived as irregular.

      Who has diagnosed you with symptoms alone? I had a lot of trouble finding one and had to travel to another country, as they all wanted proof either on tympanogram or external ear drum inspection.

      If my condition consists of strictly sound-linked myo, it could be similar to someone on chat-hyperacusis who did the operation, Astrid, who if i remember correctly said the difference between her failure and other people's success was that hers only responded to external sound. I fear that my condition could be spread to the entire ear, to the muscle not just to the tendon of the stapedius or that it could be a hyperactive stapes affecting an oval window. However, Trashboat's description in the same forum was more worrying as I can't make head or tail of it but it's pretty much all about failure. My worry is I may have more hyperacusis than myoclonus and that that could be fatal if I did it. However in positive there are others like JoeM and Lib or vasilia who I spoke extensively to about this and they said their symptoms were so similar to mine, just not exactly the same, and so I didn't have the balls to go forward with the op, and now the doctor involved in Lib's and vasilia's operation, Sismanis, is retiring which is devastating to me. There are also quite a few others on that forum, and maybe Lib knows even more, that report success. And a couple more than reported it did next to nothing maybe slight worsening, like supersmooth.
       

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