Hello!

I just found this forum, and it seems to have a lot of helpful members. Maybe you can shed some light on what I've been experiencing for about 1 year with my left ear?

I already believe to have narrowed it down to tensor tympani syndrome or myoclonus (are they the same?). It's like the ear is overly sensitive to loud noises, especially sharp ones like from glass or metal. Also, I have the "crunching/crackling"-sound and feeling that I've read comes with tensor tympani syndrome, like some spasms of this muscle. The sound/feeling comes when I speak myself or when hearing other sudden noises, so this probably sounds just normal for this kind of disease.

But here is what I didn't see anyone else having, at least they didn't describe it this way: When I go places with very loud sounds, like the movie theatre, the sound on my left ear will suddenly disappear after some minutes and it will be replaced by some kind of crackling sound. This crackling sound goes away if I put my finger in the ear, thus dampening the loud noises outside. It sounds like listening to a broken/blown speaker. It kind of scares me. Have any of you had similar experiences?

And I noticed some had even cut this tensor tympani muscle (or also both muscles in the ear?). If that really cured it, I would consider it myself, because this is really bothersome. For those of you who has had this done, can you still go to see a movie? Because I heard that this muscle is part of dampening the noise as a measure to reduce hearing loss, and sometimes the movie theatres can have really loud volume. Any comments are appreciated!

Oh by the way: I have already been to an ENT who didn't know what it was.

So, is this sort of "blown speaker" effect also a normal part of this? That was what I was specifically looking for an answer for, since it's hardly ever described (however I did manage to find a dutch man who has the exact same sympthoms, and he told me he got lots of mails each month from people with the same sympthoms who didn't know what it was, guess I can tell him then that it is indeed TTS). When watching movies at the movie theatre, the sound level is so loud the TTS (I think) is just making all these crackeling sounds and I can not hear anything else in that ear... perhaps this is a consequence of the hard pull this muscle exerts on the ear drum then.

As for an operation, is it necessary to cut both of the muscles? Is it not sufficient to cut just the tensor tympani? Perhaps it also depends on the individual?

I still haven't really decided whether I want to undertake such an operation, but if it doesn't go away by itself sometime in the near future, I really have to! I am studying to become a teacher at the moment, and we have practice-weeks on different schools for children. You can imagine how the combination primary school screaming children plus TTS feels like...

By the way I live in Norway, so a phone would be very expensive, since I understand you are american? But the internet will suffice as contact. If I decide to have the operation I will definitely need advice from you! Like I said, the ENT I went to didn't have a clue as to what it was - and from what I read on this forum, most doctors usually don't!

Jambo, it was the same for me. My left ear was the big problem. Very rarely did I have it in the right. But after I had the left done and healed after a month or so and started to get life back to normal, I realized even more how not bad the surgery was and did my right ear, because I suffered through 4 years of this hell, so I wanted ALL of it gone.

It does seem to afflict one ear much greater than the other for most, so my case was one that I just didn't want it at all. If I had had it for maybe a few months and then got rid of it, I may have never done my right ear (although it wasn't any big deal, other than being out for a day of outpatient and a day or so of recovery)

Joe

Jambo, the op is outpatient and quite quick, about an hour or so, and most good ENT surgeons should be able to cut them (but most have never done it for this reason)

Mine used a small knife for the tt (10 times smaller than the diameter of a hair)and a laser for the stapedial (100 times smaller than the diameter of a hair).

You will be home the same day, take some pain meds, and recover a day or two and probably be back to work in 2-3 days. Hearing returns about 2 weeks later, the ringing from the surgery goes away (in all 3 instances of my surgery) too.

Joe

hi ricochet!

glad the meds are still helping you.

what happened to the stapedial myoclonus board? i thought it was great....but seems to be abandoned!

lib

i hope lisa is ok, shes not posted in forever.

the link was to a page but not the board it self....

ill look at the old board and see if anything has changed

Just thought I'd continue posting in the same thread, to keep the information in one place. My sympthoms has gotten slightly better actually. Voices are a lesser problem than before, under normal circumstances. I recently was at a party, where a lot of people were. They were all talking at the same time, and my ear was doing fine for some minutes until the left ear started to crackle. How annoying! I just had to leave the place. I feel this aspect of the TTS (if that's really what's causing it) is the most annoying, as I could put up with the twitching and "snow crunching sound" (I think that's a close description of it) that comes after sudden noises, or the occasional feeling of pressure in the ears, if only I'd be able to be places with loud sound levels and still hear perfect on both ears. That crackling is, like I've already said, the worst part of it.

Even more annoying, the right ear has also started to get some sympthoms equal to those on the left ear now! Like that "snow crunching sound" after sudden noises, a typical tensor tympani syndrome symptom from I've read and other people have stated. The sympthoms didn't come from that party, they started some days before. I still don't (and I hope I will never) have the crackling in the right ear, because I probably wouldn't be able to hear what people said if the ears were both crackling at the same time. When the crackling happens, it almost feels as if though my left ear hearing is disconnected and hooked up to just the crackling, because that is all I can hear on the left ear at that time. As far as I can tell the crackling won't stop unless I move to a place where it's quieter or plug my ears. It could be that it stops by itself after a long time but I really haven't tried being places that could make my ear crackle for more than absolutely necessary, so I don't know if maybe it could stop when the muscles that may be making the sound are tired out. Once, when I first got it and was watching a movie, I know it crackled for a lot of minutes untill I put my finger in that ear and sat like that till the end of the movie. The movie, by the way, was "Kingdom of Heaven"... I'll hate that movie till I hopefully get well, although it wasn't the cause of my problems since I know I had this to a very small extent some time before that movie.

I still haven't seen a doctor about cutting the tendons of the tensor tympani, mostly because I'm scared that after I've done it the sympthoms will still be there and I've cut a muscle for nothing. Also, like I said it has gotten slightly better - but only slightly. It got better some months ago too, but not this good, also it suddenly got worse again then. It has not (yet) become worse again this time. I need to gather more courage to talk to surgeons I guess.

By the way, I asked a professional doctor service online about what they would suggest. They seemed to know about the TTS at least. According to them, the risks of having this done was damage to the middle ear bones, post-operative damage of the ear drum and infections.

JoeM, seems like you have rid yourself of all your troubles with your operations. What was the issues still remaining when the tensor tympani was cut and the stapedius was remaining? Do you think TTS always involves stapedial myoclonus (or do you know it for a fact)?

Ricochet, that medicine might have worked for you, but I'd be very sceptical to start using a medicine designed to stop seizures in people with epilepsy, as a quick search on google seems to indicate that your recommended medicine is just that.

Hello,

JoeM, Thank you for all the great feedback! It's really nice that you still stay on this forum to help people even after you've succeded in getting well yourself.

I've been thinking about the operation since you first mentioned that it had helped. And I did some logical thinking about my second thoughts: The tendons serve the purpose of protecting the ear against very loud sounds (which I don't plan on being around a lot). But the way I am now, I am not able to be around such loud sounds anyway. This means that even in the odd case that the surgery doesn't help, the cut tendons won't actually be missed since I cannot be around those drum ripping noises anyway. From one of the documents you've linked to in another thread, the TT at least seems to be just a prehistoric and useless muscle, analogous to the wisdom teeth. So the surgery is sort of like a win-win situation where I can only get better.

I will most definitely get an appointment with my doctor soon to talk about this and get sent on to somewhere I can discuss having the surgery. From what the online doctor service I asked told me, it's not very common to do this procedure (for this cause?) in Norway, but I guess it's not common in any country. I've discovered that I live right next to one of the two biggest centers for ear surgery in my country, that makes a lot of things a whole lot easier. Hopefully I will have moved one step further down the path of total recovery in not too long.

Again, thanks a lot!

i can say with out a doubt.......cutting those tendons was the best thing i could have done for myself......no regrets at all........my life is so much better!!!!!

thank you dr sismanis!!!!

JoeM, I'm still here and still considering the operation, I didn't get completely freaked out by your last paragraph

I also have a little bit of T, although nothing really noticeable. I think I read some place that T is always a risk with ear surgery.

The sound distortion you're mentioning, does it appear in other situations than yelling from the top of your lungs? I mean like going to the movies etc. Right now, what I'm guessing is TTS-related, I'm having sound distortion if for example (anyone with TTS would get the creeps just by imagining this) I would be carrying a kid on my shoulders and that kid would scream loud into my ear (well not straight into, probably at half a foot's distance), right on the border for it to begin crackling. That distortion reminds me (kind of, not quite though) of what it sounds like if you're speaking too loud into a microphone, like it reaches its peak value and is "clipping" (if you've done sound processing or recorded on stereos with sound level monitoring you'll know the expression). I'm just telling this to have a comparison with the distortion you're talking about. I mean, I can't remember having sound distortion ever before getting TTS. But then when I think real hard I can't actually remember ever having yelled really loud either, so the problem you mention could perhaps be only in relation with vibrations or sounds from the voice through the scull, maybe even normal?

I know you said you could go to bars and loud places before, but it would just sound great to hear about it again  You don't have any problems at the moment? What you mention before having the op is exactly what I'm worrying about now, you said "I won't be able to go anywhere, bars, nightclubs, anyplace where it may be loud, or even hanging out with friends, if they got to noisy." Like I would have said it myself. So, both lib & JoeM, you are now fine with any loud situation? Of course rock concerts are too loud even for people with normal ears so you don't need to mention that... I didn't go to loud concerts even before I got TTS simply because they always turn the volume up too much. When one of the top selling items at rock festivals are ear plugs you just know something isn't right.

i can become sensitive to loud loud bars or live bands, so i jam some cotton in my ear, only the ear with both tendons cut, i still have one stapedial and may cut it, its better with the tt cut on that side, wish i had cut them both! anyway its no big deal and very rare i need the cotton.

another victim in florida is much better too with the tendons cut, goes to bars and is a musician....hes fine! i know its scarey....but its so worth it...no regrets at all here.

joe you are amazing at your ability to help and explain this to people....awesome~

you have come a long way joe, i remember when i was in complete panic, i remember when you were.....and thats why its so important to spread the word.

so glad we have come this far.

going to florida on thurs for a few days.....cant wait!

Jambo,

From your descriptions so far, your symtpoms fall under tts/sm. And yes, thankfully, that is very operable and treatable. And nothing to fear with that; it has a name, and an explanation.

Joe

Ricochet, read the end of my previous post. I said that I had this for a short period when I was younger and played in a brass band. And then it went away and I never heard of it for several years untill this time around, but now it's not disappearing again.

Joe, did you have tinnitus before the surgery, and if so what do you think brought it on.  Do you have T now?  Is it louder than before the sugery, if you had it before?  Thanks.

Thanks Joe, after the concert I had T, then that didn't bother me, then the fluttering did, then that subsided at bit, but shortly afterward dishes, voices, certain things seemed loud to my ear and still does, sometimes I feel it will set my spasms off, and they have just recently.  The ear fullness in my ears when my spasms are on edge, is high.  This morning the ear fullness is not as bad, nor do I feel the spasms are on edge. 

You mentioned the pressure subsided with the surgery, did you feel at all sensitive to some noises, like it would set your ear off?  You just woke up one morning and you ear was fluttering and had some pressure or ear fullness? 

 As I'm looking for a Ear Dr. who has experience with st and tt, I'm finding many do the surgery, yet picking one is difficult, I don't want to just base it on the office visit.  At California Ear Institue it is $500.00 to $1,000.00 for the visit, not incuding the CAT Scan or Ear Tests.  Some places are half that,  I'm in search mode right now.  I wish I knew someone who had it done in California.

Gosh Lynn, that's a great analogy! A a bad nerve.  Since the nerve may have gone bad to the muscle, you can't fix the nerve, so cut the tensor?  Hmm.  Possibly when the ear hears something too loud for it, it will flutter, but.... what about when there is no noise, the ear flutters at night?  (Too much SALT will make my ear flutter at night, irritating a nerve, and then causing the tensor to spasm??? STRESS is bad on nerves too.) If you were to of cut your tensor, do you think that would of helped? 

I noticed when my tensor is on edge, noise bothers me.  I had NO fluttering for months, even noise was getting better, then I'm not sleeping so well, maybe a bit stressed, and WHAM!!!

Joe, I'm, so happy for you, I'm, so glad you stay on this board even though your better.

Once the muscles or nerves are diseased,. they don't serve their purpose,...so do the next best thing right,.,.,.was just hoping they wouild get better,. seems they do,. then BAM, you're right were you were,. so they are really just hanging in there. barely,.,.,.

Hi Mulan, ((( Smiles)))

In my case I think it was an injured nerve.. Otherwise I would have never got rid of the tensor spasms at all. Something reset.. Healed... Maybe not 100 percent healed in their I have no idea... but my tensor spasms are all gone now...

It took me about a year for this to happen...............

Whatever went wrong finnally fixed itself or healed from.. maybe an injury from a nerve trauma or virus injury or sounds just being heard too loud.......

But if it was nerve damage that could not heal or get better thou I'm not totally sure that something that has damage can't heal at all...

But I don't know it couldn't for sure...... even thru the duration of sound therapy over time..

Bringing ones hyperacusis down as I had have hyperacusis.

Then maybe I would thought of another alternative to the problem.

I think tensor spasms have gone away before for hyperacusis people and I have tinnitus as well so maybe for tinnitus people thought mine mostly had to do with sounds being heard and felt..

Though I had pops and thudding and  DA Da Da Da movements in a row in my ears before just happening for no known reason that I know of.

Thats different then this other thing I'm left over with now... 

This other thing hasen't gone way for me............. 

But nerves do feed the muscles and a wacky injured nerve could cause a fluttering to just happen out of the blue............

Weither it's injured by an acoustic truama or a virus or medication.............

But if I was to cut my tensor back then.. I don't know if it would have helped me..

It might of but for me I'm glad I didn't do it..

I had hyperacusis.... And who knows if that would have helped me or not.....

And how much...................

But I just noticed that when my tensor was spasimg badly to sound weither soft or loud..

My hyperacusis was the worst in the loudness disorder part of it........... Just real severe............

I'm not sure how much the tensor has to do with the sensitivity to sounds but I believe alot because I was sensitive to the sounds that your tensor is sensitive to as well......................   

I'm just glad they went away.. And I think I shocked them or spasmed them out with sound.. I'm not sure how that works.. But my spasms did not like what I did to them............... 

I had to do what Dr Vernon asked me to do... Just let it rip every day on purpose and it was loud and terrible what I went thru in exposure over time for that to happen for me...

Till they were felt as a light touch like clamping spasm or light flutter late Feb 04..

So for me.. What felt damaged.... Maybe wasen't..

Maybe just more injuried then anything..

I have no idea................ My ear muscles were spasming real hard like a physical assualt at times...

But I am interested in the concept when it come to the tensor spasming to sounds or just fluttering all.

And makeing sounds sound louder and hurting with sounds from the spasming..............................

I'm just glad it went away...........................................................

But why did I have it in the first place..............................

And how can something so bad go away ????????????????????????????

I'm not totally sure..................................................... 

That's great! Keep us posted!

i dont know of any in texas......only virginia and chicago......joe where is pauls dr? arkansas i think.

what are your symptoms? and for how long?

lib

Hello People,

I am also glad that I found this forum and new TERMS (TTS/SM). I am an engineer and fanatic guitar learner.

Here is my story:

Almost an yr back, I felt that my left ear was not responding to very very high frequency sounds. I visited ENT specialist and he asked me to take the audio exam. He later confirmed based on the results that I do have some high frequency hearing loss. He asked me take blood test and possible MRI. I took both and everything was normal. Meanwhile, I started noticing that my left ear started becoming sensitive to loud/unexpected sounds. IT reached peak for almost 2 weeks or so. I visited the doc again and he prescribed me some steriods tablets. I am not sure whether it was tablet or it just happened for no reason but the hyperacusis thing reduced considerably. I still do have it though but I can live with it I guess.

WHAT I CAN'T LIVE WITH IT is this new thing which irks me a lot. This usually happens after my guitar practice or listening to iPod (headphones). In general, prolonged exposure to medium-high decibel sounds causes it. Funny thing is I dont get it much when I watch TV with volume tunred on quite high. Anyway, this thing is - Fullness in Ear, Popping in out, Persistent strained kinda pain. It stays for 7-8 hrs on avg OR it depends on how long I have played or listened. IT goes away then and then I am left with my normal hyperacusis.

This TTS/SM? is really affecting my practice. I am so fond of music and I was still learning when this happened. Could you please help me here? My ENT doctor has aked me to come back for another round of blood test. He wanted to check for some mineral deficiencies and he did indicate there could be some muscle spasms happening. I didn't believe it until I read today on this forum.

Do you believe I have TTS/SM? Can it be cured through medicine.surgery?

PLS help me. I want to go back to my music passion.!!!

Thanks

syd~