The Hyperacusis Network Message Board
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
jambo

Registered:
Posts: 31
Reply with quote  #1 

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.

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #2 
Hey, Jambo, I have shared your experiences. This (tts/sm) is quite a strange one.

Let me be forward. Cut the tendons. Surgery is the only thing to help. I can go into great detail and maybe one of these days, my entire story will be up so that everyone can read the whole thing and everything they want to know will be there, as it seems more and more people are getting this and retyping gets repetitive. So I would be happy to share everything by phone if you feel comfortable.

But some quick points. I am fine. Loud noises, movies, I am fine. You are right, the tendons do serve to protect, but it isn't really a horrific thing. Lib (who originally helped me find out), will tell you the same. We are back to our normal lives now. I have had both tendons in both ears cut, and I now am EXTREMELY GRATEFUL I did this. And to answer if they are the same....yes and no. They both are "muscle" spasms, just of the two tendons.

I can recommend doctors, and so can Lib. There is help and a light at the end of the tunnel. So ask anything else you need.

Joe

PS: and most ENTs have never seen this before and the ones who have, it is still hard to prove (diagnose) but also easy in a way by the description of symptoms.

__________________
That is my two cents.
0
jambo

Registered:
Posts: 31
Reply with quote  #3 

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!

0
lib

Registered:
Posts: 272
Reply with quote  #4 

well it is usually both muscles that are involved, my dr highly suggests to cut both, and that is what i would do. the surgery is easy and not a big deal so try not to worry.

lib

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #5 
Yes, the "blown speaker" is a part, at least it was for me. That is exactly how I describe part of the symptoms.

Remember, tts and sm are two separate but similar diseases. TTS is tensor tympani syndrome, or a muscle spasm of the tensor tympani tendon and stapedial myoclonus is a muscle spasm of the stapedial tendon. Since only the tendons can be severed from the ear bones, that is why I refer to the tendons, but the muscles are involved too. And tts and sm almost always occur together. The reason the surgery works is that the muscle is connected to the tendon which is connected to the bone....take away the tendon and the muscle cannot pull the tendon to pull the bone to vibrate the eardrum or vibrate the tendon.

If you do the surgery, cut both. Why do I say that. I have had 3 ops. Left ear...cut the tt tendon. Eliminated about 80-90%, but the stapedial still caused some issues. As the docs who know their stuff (and from my case history and people I know with this who have had it done), both tendons/muscles are involved. Safer to get both done. So I had the surgery later to cut the s. It eliminated 100%. Then did it in the other ear, which wasn't as bad. I did that because the aftereffects which you have been keenly informed of (sounds being too loud) is not so much so. Sure the tendons help muffle sound, but it comes in effect when there is really really loud sounds, like standing next to a speaker at a concert, which is unsafe anyways. Normal everyday life, even going to bars for me, seems nonetheless the same. I "hear" no difference. My ears are fine.

Ask Lib, she will say that doctors cut these tendons for other routine surgeries all the time, so it really and honestly isnt that big of a deal to do this. Except that most ENTs have never heard of this, so doing it for this reason is a little weird.

I have been in contact with several individuals who have decided to see if it goes away, wait it out, etc. I did the same. And ALL of us, have ended up after many months of waiting, have all realized, it doesn't get better, (it is like diabetes, once you have it, you have it). Many of us have tried diet and meds, with little results.

There are some other posts I have where I list links to articles about tts. Just do a search for them. They don't include stapedial myoclonus, but do a search for Dr. Hain, he may have something on it.

Joe

__________________
That is my two cents.
0
jambo

Registered:
Posts: 31
Reply with quote  #6 

Thanks a lot for all the information! I really appreciate it. This sounds like something there should definitely be a web site about, to inform more people!

 

I need some time to let the information sink in, I guess. But eventually, I am going to need the surgery it seems. I will definitely get in touch when that day comes, probably need to convince some doctors to do this... I only need it in the left ear, I have no problems whatsoever with my right ear (it has the occasional single twitch very rarely, but nothing seriously and nothing sound activated).

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #7 

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


__________________
That is my two cents.
0
jambo

Registered:
Posts: 31
Reply with quote  #8 

So the operation itself is really no big deal? Are you awake during the procedure and all? I suppose the surgeon can't exactly have parkinsons if you know what I mean; pretty tiny stuff to be operating on from what I can see on pictures.

How about convalescence times then? I assume the cut for entering the inner ear will need some time to heal but can you "go around hearing" (in lack of a better expression) in the mean time?

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #9 

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


__________________
That is my two cents.
0
Ricochet803

Registered:
Posts: 7
Reply with quote  #10 

I have had this problem for a long time so I have it saved and have cut and pasted my description below. It has been fine for almost eight months with no problems but has started to recur just slightly.

 

I wanted to let you know about a drug to perhaps try. I went to a neurologist who prescribed TRILEPTAL. It seems to have helped me so I wanted to share that before you have the surgery it may be worth trying.

 

Here's my cut and paste:

I have the following symptoms: *During quiet (e.g. sleep, etc.) periods I had no symptoms *When subjected to sound above a certain threshold I heard clicking sounds only in my right ear. *Certain types of sounds seemed to trigger the clicking. The worst sounds were running water, shower, rustling of paper, etc. *The clicking stops just after the noise stops. It has some other weird behavior. Lets say I start the shower running and the clicking starts I can put my finger in my ear (making it quiet and applying a slight pressure in my ear) and the symptoms will stop. Then I can sometimes pull my finger out of my ear and the symptoms will not start back even though I am hearing the exact same input that started the symptoms, etc. I can always get the symptoms to stop by briefly putting my finger in my ear. The symptoms may or may not come back. On good days only running water, shower, etc. and not talking people will set it off. On bad days any moderately loud sound will set it off clicking. It only happens in the right ear. So when it is quiet then there is no problem. When I run water in the sink then it starts rapid clicking. As I tried to express earlier. Certain sounds are much more susceptible to set it off. For example loud toilet flushing will readily set it off (unless it is in remission). The sound has something to do with triggering it, but what I find strange is the fact that I can stick my finger in my ear (blocking the sound or slightly changing the pressure) and I can get it to stop. Then I remove my finger and frequently it will not start back. Even though the ear is now experiencing the same sound (trigger) that it was. Some possibilities palatal myoclonus stapedial spasms (myoclonus) or tympani spasms

0
lib

Registered:
Posts: 272
Reply with quote  #11 

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

0
Ricochet803

Registered:
Posts: 7
Reply with quote  #12 

Hi Lib, I kinda lost touch with Lisa. I think last time I checked it had moved.

 

Try this link:

 

http://members.tripod.com/lisa_mapes-ivil/stapedial_myoclonus/

 

Thanks for the well wishes and the best to you too!

0
lib

Registered:
Posts: 272
Reply with quote  #13 

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

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #14 
Richochet,

I am going to PM you with Dr. Ryzenman's personal email. He gave it to me for just such people. Your description gave me chills. It is so much like mine. Don't wait any longer. They can definitely help you. Please, seek them out.

Joe

__________________
That is my two cents.
0
jambo

Registered:
Posts: 31
Reply with quote  #15 

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.

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #16 
Jambo, all of the stuff you are experiencing right now, I went through. So did Lib. So did Paul (who doesn't post here).

1) Yes, the symptoms are like a rollercoaster, they can be really bad, then really good. Sometimes they can be good for days or weeks, and sometimes just hours. And the same for the bad.

2) I was scared out of my wits that it wasn't going to work and I would be out of options. Spending all that time, money and effort for surgery that didn't work. It worked. Paul went through this too. Believe me, I know exactly how you feel. What if....???

3) Medicines, so far, there haven't been any total success stories with meds. There may be a few people who have been helped somewhat but the problem remains, just to a slightly less level. Cutting them will eliminate the problem.

4) From my own personal experience and the experience I have from talking to Dr. Sismanis, to Lib, to Paul (who has cut only his tt.....I know that after I cut the tt in my left ear...leaving the s, I still had some of the issues remaining. Granted a lot of it was gone. Dr. S. believes that most cases both are involved. I believe that is true because both of those tendons work closely with each other. Even my docs agree along these lines. Paul cut his tt and still has a little bit left. Remember, the tt is 10 times the size of the s, so it can cause more "pull" on the eardrum (my theory). Plus, the two work in conjunction.

5) I know someone on here has mentioned a "flaccid eardrum" and I think Lib responded to this saying it is probably myo. I agree. The eardrum is most likely vibrating from the tendons pulling on it. I did have the broken speaker effect.

6) You mentioned you were at a party and were good. This is a strange phenomenom I tried to explain to my docs about when there is a lot of white noise like being at a party or such, the ear doesn't act up. My thoughts on this is that because the ear can't focus on one sound, it doesn't act up, OR, it is less noticeable because the ear is working on "listening" to so many other sounds...my theories though.

Also, I did have the same effect where after being in a place too long (like a party full of white noise) my ear did start to become more "active" and I would start to feel the myo. Maybe this is because it would become tired...who knows.

7) When you talk about having to get away from the noise or plug your ears to make it stop is very indicative of myo. And I would tend to fall on the side that cutting both is your best bet...WHY? Well, just my advice from being on the other side now is that I was there, cut the one, then found out I still had some issues remaining, save yourself the trouble and do both tendons.

Also, I (as well as others) seem to have one ear worse than the other. I decided that after I cut the tt, then a month later cut the s in my left ear, that even the very minor thumps I got in my right ear were going to be stop...because I was going to cut them suckers too since the left ear was a 100% success.

8) Last but not least, I just went back for my final post op to do a hearing test...I have no hearing loss due to this...my ears are still otherwise fine. I don't have trouble with loud or noisy places, like bars, etc. If you want your life back, without having to resort to Class A liver-killing anti-seizure epilepsy drugs, cut them. That's my advice...but it is still up to you.

Joe

I hope this can help.

__________________
That is my two cents.
0
jambo

Registered:
Posts: 31
Reply with quote  #17 

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!

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #18 
Jambo,

You are right on several key aspects.

The tendons are there to protect against very loud noises. And, the tt does seem to have really lost it's true function (almost like an appendix, we have one, but it doesn't do much expect when it goes bad..)

The stapedial is what is really there to help protect us against noise, the tt not so much (at least this is what I gathered from my docs).

You mention cutting these tendons are rare (for this cause--which is correct) but they are cut for other surgeries. The stapedial is cut all the time for stapendectomies are cholestetomas (sp?)

What this really comes down to is do you spend the rest of your life battling each day the thumping and crackling inside your ear or do you say let's cut them. Sure the first is safe, but the second is a risk. H***, I was scared out of my mind to actually do this. The first time I scheduled surgery, (which was about a month in advance), the closer I got, the more I didn't want to do it. I even cancelled it! I said no way, my life will be over. 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. I said I could live with it. I am a very strong person, (mentally/emotionally) and I don't let stuff get to me, I can beat whatever comes my way...but this brought me down. I wasn't going to let it win by giving in to surgery...a place of no return...I would beat it. But I finally figured out there isn't anything I could do and that surgery wasn't giving in. Surgery was beating this...and so I moved on...and am still doing so and to this day, it is difficult to notice that the tendons are missing.

I will say, however, it isn't all peaches and cream. You may end up with a slightly higher T, may. Also, if you do yell at the top of your lungs, your voice will sound distorted, but God knows this is nothing to worry about or even to compare to the original problem. The tt may have a use as a voice modulater at extremely high sound levels. Also, don't stink your ears next to any 12 foot high speakers at a rock concert without cotton (which one shouldn't do in the first place)!

I hope this last paragraph won't freak you out, because it really isn't as bad as it seems. I already had T, so that didn't bother me.

__________________
That is my two cents.
0
lib

Registered:
Posts: 272
Reply with quote  #19 

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!!!!

0
LynnMcLaren

Registered:
Posts: 7,991
Reply with quote  #20 

Hi Joe, ((( Smiles )))

 

I love to read all that you and Lib write.. Unfortunately for Astrid. Laser therapy did not cure her of her myoclonus symptoms..

 

I wonder how she is doing with it now..

 

I hope that she has improved over time..

 

Astrid believed if her myoclonus went away.. Her hyperacusis would go away or get better but it seemed she improved some regardless of that accessment...

 

The reason I would love to know if she has improved futher with her hyperacusis without the symptoms in her ear going away weither the tensor twitching spasming to sound one or whatever else kind of one is because she has hyperacusis..

 

A follow up would be great on knowing what she still feels in her ears at this time in relation to her changes in hyperacusis.. And if the twitching to sound one went away and the others ones have not and if her hyperacusis got better with it..

 

I found her accessment to be an honest one and I am glad she was happy with her progress at the time..

 

You wrote ........ 

 

Also, I (as well as others) seem to have one ear worse than the other. I decided that after I cut the tt, then a month later cut the s in my left ear, that even the very minor thumps I got in my right ear were going to be stop...because I was going to cut them suckers too since the left ear was a 100% success.

 

--------------------------------------------------------------------------

 

Also.. My left ear is the loudest one in the 24/7 rumbling I only hear inside my ear not outside of it and it's heard fainter in my right ear..

 

As my other roaring thundering booming thing mostly in reaction to a yawn, burp or air suppression pressure is louder and mostly hear audibly in the left ear and fainter and sometimes equal in voume if it's a deeper one on the right..

 

Sometimes it's one ear or both ears equally heard.

 

And I think about what Marsha wrote about the ears being interconnected that what may be heared or expirenced in one ear.. May be expirenced by the other as well...

 

So I'm not sure if it's totally left ear for me and just an echo or messed up on both side's but more in the left and less in the right.. As the thunder booming thing can be heard equally in both ears at time's.

 

But fortunately for me..  The beating twitching eardrum to sound thing went away for me.. The only other reactions I have ever had to sound in jumping in my ear or the booming thing was in reaction to a firecracker at a distance but close enough..

 

Or the singing to my daughter while going thru a CD stack in a big wooden furniture cabinet.. I think it was the acoustics and a booming voice with emphasis. But otherwise.. I've been in real loud sound sitituations and it doesn't react to the sounds..

 

And my eardrum reactions to sounds are totally gone..So I just tune it out and not yawn and burp when I don't need to do it..

 

But I was reading what you wrote above about white noise and the condition in some situations..

 

I think how I calmed my eardrums tensor spasms down was doing the pink noise thing for almost a year. Steady at it.. And then finally toward the end of that time.. Shocked my ears into submission..

 

I just made them go crazy like de-senstization with shock therapy..  I just let it happen...It was pure torture at the time for me as it was very hard to do ...

 

And didn't go away for awhile while I had to deal with it everyday.. I think it was in Oct or November 03 when I started doing this..

 

Oct 03 was when I did my expirement to the voices directly without the plugs.. I could handle " tolerate " low certain sounding voices without the plugs at the time..

 

As I was building myself up to sounds over time before that..

 

And then they were about all gone.. The Tensor spasms.. Feb 27th 04 as I wrote it was just like a lite touch back then..

 

But for me.. At my worst.. Earplugs didn't totally get me away from sound..

 

I still had the tensor spams to turning a lock, a doorknob, metal on metal sounds, dishes, paper turning ect.. Right thru the plugs on contact with theses sounds..

 

But better with the plugs then without them at the time..         

 

But  I don't know if my eardrum was flaccid.. Soft , Flabby , Limp... Maybe earlier I don't know as everytime they looked at my eardrum..

 

They said it looked fine to them..

 

But I do remember tight, hard, dull and painfull like someone strikeing a drum..

 

Beating on it with sound and it wasen't giveing.. It was dull , tight, and beating hard..  I felt it inside on my drums as such...

 

But the other tensor spasms to softer sounds where more clamping like and soft but clamped " Twitched " hard and the clamping hurt.

 

I'm just so glad that it all went away.. And thats how it seemed to go away for me..  

 

So I just have this other thing left thats not a big sound reactor or hardly ever if ever reacts to anything like sound at all.

 

Just yawning, burping and the pressure air thing..  With crackling in my ears.. Both ears crackle but not to sounds...

 

I had the static sound thing in reaction to sound but that went away too...

 

So here I am now.. Just glad my hyperacusis is 95 percent better. And I did have severe hyperacusis.. Don't ever want that back.......

 

But I still find your expirences interesting. I hope Astrid is feeling some relief as well with her symptoms.. 


 


__________________
Take Care

Lynn
0
jambo

Registered:
Posts: 31
Reply with quote  #21 

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.

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #22 
You are right, T is a normal risk of any ear surgery, but not a high risk.

Sound distortion: No. Nothing else, nada, zip. Just the top of the top yelling for a split second.

Well, the sound distortion you talk about could be the crackling of a blown speaker, which was def. something I experienced. Although, from your last description, it may and I emphasize may be a bone problem. Your ENT will probably do the routine MRI, but have them do a CT scan if you can afford it. It will rule out some other ear problems, like a hole in the bone and some other things I was tested for early on.

Your worrying is normal. Totally normal. I understand. Do talk about it with your doc. But I am living proof that the surgery was a success. I honestly can tell you I was scared out of my mind...that's why I cancelled my initial surgery. Sure, any surgery has risk. But you have to look at what the options are and the adv/disadv. are. How much does this bother you? Are you willing to live with it everyday? Or do you say let's do it. Sure, no one but God is going to honestly know what is going to happen. I mean, we could die crossing the street tomorrow. All I can say is that if it is truly tts/sm (which is sure seems to be) then the surgery will work and you will come out great. There are others besides Lib and I who have turned out fine, in fact, I don't know anyone who hasn't.

Joe

__________________
That is my two cents.
0
lib

Registered:
Posts: 272
Reply with quote  #23 

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~

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #24 
Thanks Lib. I owe a lot of my success to you. Your initial help got me on the road to where I am now. I really appreciate your kind words. So I thank you again.

I just don't want people to have to spend 4 hellishly long years trying to find a doctor or a diagnosis like me. If I can help people get rid of this quickly, I know my pain wasn't in vain.

__________________
That is my two cents.
0
lib

Registered:
Posts: 272
Reply with quote  #25 

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!

0
jambo

Registered:
Posts: 31
Reply with quote  #26 

I've been doing some searching on Google this evening, and I found another one who has extremely similar sympthoms to what I have. I just copied and pasted some of his description here:

 

"I have a condition in my left ear that causes me to hear a loud crackle noise whenever a moderate external or internal noise is present. [...] It almost feels as if the ear is shutting off in response to a noise, and generating a sharp loud crackle instead."

 

That is exactly how I would describe what I have. I had only that for some time, but it was only triggered by extremely loud noise, like playing too loud on an mp3-player (yes, I know I was stupid but I never thought about protecting my ears before), so loud that I didn't think it was in my ear, but thought that it was the ear phones that were crackling because they couldn't play music clearly at that sound level. But then one time at a movie my ear started to crackle, and short time after I had the typical TTS-spasms after sudden noises and discomfort from sounds exceeding a certain sound level. I have now started to get the TTS-stuff in the right ear as well, but as of now, there's no crackling under loud sound exposure in the right ear, only the left. And it doesn't have to be loud either, a lot of people talking together in a small room could make the crackling start. For what it's worth, the crackling seems to be uniform no matter if music or voices trigger it.

 

So my point, is that I am uncertain of wether the crackling I'm experiencing could really be related to TTS or SM. I would like it to be because then there would be an explanation and a name for this. I would be totally freaked out if it was something wrong in the inner ear (cochlea or other fine organs), because then ther might not be a cure. Or it could be the bones like JoeM suggested, in which case it should be operable. Actually, when I think hard, I remember having the crackling for a short period while I was younger and played in a brass band, the crackling would then appear when I was playing. But it went away on its own that time, although I cannot remember if it disappeared because I quit the band or if it disappeared before that. Would that rule in favor of TTS and SM? I'm puzzled by this condition!

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #27 

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


__________________
That is my two cents.
0
Ricochet803

Registered:
Posts: 7
Reply with quote  #28 

I just want to know if anyone else has theirs go away for months and months at a time and then return. This is not a constant problem for me.

0
jambo

Registered:
Posts: 31
Reply with quote  #29 

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.

0
Mulan

Registered:
Posts: 60
Reply with quote  #30 

Yesterday, I was touching the keys on the phone to dial out and every number I hit made a tone and so did my ear, like a thump, I thought it was air pressure, then I turned the tone off and tryed punching numbers again, and nothing, only thumps to noise.  I've been sick lately and not sleeping well and haven't been taking vitamins, ect... and was thinking my ears are being very sensitive cuz I'm sick, or maybe not, so I took a bath, I normally take a shower, but wanted to relax, and when I turned on the water and the water hit the tub water, my ear so help me god....went thud thud thud, exactly like a blown speaker!  When I turned the water off, my ear stopped.  It also stopped when I put my hand over my ear. 

I noticed the past few days any repetitive noise, I can notice my tensor spasm.  THIS SUCKS!!!!!!!!!  It used to only do it to yawning or trying to close my eyes to sleep, but only fluttered, nothing like a blown speaker.  My eyelid has been twitching too.  I have increased pressure in my ear, seems like when I want to pop my ears, my tensor is on the edge of fluttering. Joe your right, this noise induced spasms may creep on to haunt me.  I'm having a very bad day, even typing this is bothersome to my ears.  So, the pressure subsides with the surgery?  What happens when you hear a loud noise after you cut the tensor?  Does any sensitivity to noise diminish after the severed tensor, since that tendon cannot react anymore?  I jacked up my calcuim intake, hopefully being sick is all that brought this on....the "blown speaker" effect is a good one, that is exactly what it sounded like!

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #31 
Mulan,

Let me start off by saying it is probably not just your tensor tympani, it is also your stapedial. I absolutely and completely understand your worries, your fears, your anxiety.

Trust me.

I started the same way. It onset slowly and then became gradually worse, but exponentially. I am going to be frank about this because sugar-coating it doesn't do anyone any good. I haven't met anyone for whom this has gone away. Yes, there are times when it seems better and times when it seems worse, and those periods of time vary from person to person.

To answer your questions. Yes, the fullness, the pressure, they go away. It will take time, say a good 2-3 months before everything goes back to "normal". I do not have sensitivity to noise. I cancelled my first surgery because I was so ****ing scared. There is nothing to be scared about. Since my last surgery, I no longer have the stapedial tendon and the tensor tympani tendon attached to the bone/muscle in both ears. I have since then, been to crowded noisy bars, sporting events and the like, and have not been hypersensitive to noise. The blown speaker effect is gone --- eliminated --- toast. So are the thumps, the hellish noise-induced thumps, the same goes for yawning, burping, you name it.

There are others who have gone through this surgery (not all of them post on the boards) who I have had many months of conversations with who have concluded the same thing and eventually went through with the surgery and have come out with shining colors. They also realized that no amount of nutrition, medication, stress-reducing activities will eliminate this. It may subside somewhat, but no matter what, it is always there, ready to come back from "hybernation" or just a lesser degree.

I highly recommend you consider it. It does work. If you continue to be stressed over this, there isn't really anything serious to worry about.

If you honestly want to know more, PM me and I will help you, give you more advice, talk to you. I know what you are going through, and it sucks, I was there.

Joe

__________________
That is my two cents.
0
Mulan

Registered:
Posts: 60
Reply with quote  #32 

Last night when I tried to sleep, both ears fluttered with the vengence, they would not stop, I could not control them, I had to take a Xanax, which I have not had to taken since November.  This morning my ears seem better, yet, I am still very tired.  I'm in the process of getting an appointment at the California Ear Institute for a CAT Scan and seeing a Specialist, who according to them does this "cutting" surgery.  The visit alone is very exspensive, yet where else can I turn to?  I wasn't very stressed when I went to sleep, it was weird, it just came on like a storm.  I was up all night hanging out with friends too. Maybe it was stress to my body, I cannot even eat now, just feel sick.  I do not want to go through this ear fluttering everytime I feel sick.

0
Mulan

Registered:
Posts: 60
Reply with quote  #33 

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.

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #34 
You are finding out just as I did, and my friends who have (or had) this....that the spasms don't seem to have a rhyme or reason. Initially, I (and others) tried to figure out what brought on episodes, and then subsequently avoided those things, but soon after, found that avoiding those things could also bring episodes. In the beginning, alcohol would help reduce the spasming, then that stopped helping. I tried other things, but eventually, nothing stopped them.

Very very frustrating.

To answer your question about T...(here's the whole story). First surgery in May 2004....ENT thought I had a perilymph fistula (hole on the cochlea) and that was causing the spasms. Did have a hole, but it wasn't causing the spasms. After THAT surgery, I had tinnitus, assuming so because he operated on the actual electrical hearing portion (cochlea). After that, had a correct diagnosis of stapedial myo and tts. Went back in that same ear and cut the tt, then two months later, cut the stapedial. The t. didn't increase too much. It had been there from the fistula surgery. Two months later, I had the s and tt cut at the same time in the right ear, which had no T. After that ONE surgery, I was left with a very small amount of T, which is small (or quiet enough) I only notice it say once a week at max.

Joe

__________________
That is my two cents.
0
Mulan

Registered:
Posts: 60
Reply with quote  #35 

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.

0
Mulan

Registered:
Posts: 60
Reply with quote  #36 

I wonder if the fullness people have in their ears is all related to the Tensor Tympani as the link, you, Joe have posted often on this board by Klochoff.  Is is true that not every tinnitus suffer has fullness, yet, the ones with the fluffering in the ear do????  Maybe the fullness a T person experiences is caused by the Tensor Tympani even though they don't experience fluttering or blown speaker effect.???

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #37 
Mulan,

I had a very long conversation with an very knowledgeable audiologist whom I was referred to for information early on in my search for answers and he talked with me on the phone for almost an hour and went into great detail about how the ear really worked and how the dysfunction in any part of the ear can cause a host of other dysfunctions and cause many of the symptoms you and I experience. Suffice it to say, I don't have enough room here to elaborate, but yes, in short, the spasming can cause fullness.

I no longer have the fullness and pressure in either of my ears. It just isn't there anymore.

__________________
That is my two cents.
0
LynnMcLaren

Registered:
Posts: 7,991
Reply with quote  #38 

Hi Mulan, ((( Smiles ))))

 

I was just thinking about what you wrote........

 

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. 

 

-------------------------------------------------------------------------

 

My ears use to spasm to the sounds you posted above and sounded very loud to my ears back then................ As long a I had the tensor spasms.. Things seemed real loud.. But as my spasms got better.....................

 

The loudness disorder seemed to get better too though wasen't completely gone but lots better........................

 

My tensor spasms where a lite touch when my loudness part of the disorder " went way done in volume " got lots better for me.......................

 

I wonder what tensor spasms have to do with makeing sounds sound loud..

 

Or maybe they don't.. Maybe they are just in reaction to the sound or noise of things sounding too loud..............

 

A nerve thats gone batty to the muscle.......................

 

Caused.. By an acoustic Trauma.. A loud concert. The disturbed nerve function to the muscle to the ear.......................................

 

A reaction or a cause ??????  Or one of them..........................

 


__________________
Take Care

Lynn
0
Mulan

Registered:
Posts: 60
Reply with quote  #39 

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.

0
lib

Registered:
Posts: 272
Reply with quote  #40 

my docs think a virus damaged a few cranial nerves and triggered my myoclonus....i do believe this is what happened in my case as i was very sick for a few months....but a lot of things can trigger this, as dr sismanis says, once the muscles/nerves are diseased.......they dont serve thier purpose....and if they are causing grief.....

i back joe.....i was scared out of my mind....but did it.....and am thankful every day for that surgery!!

0
Mulan

Registered:
Posts: 60
Reply with quote  #41 

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,.,.,.

0
Mulan

Registered:
Posts: 60
Reply with quote  #42 

About two months ago,. I had something in my eye and had to go to the eye Dr,. to get it out, but before that,. since it was nighttime, I was trying to sleep and my eyelid couildn't close becasue it was bothered and duing this my tensor fluttered badly,.,.,..,possibly a nervous reaction caused my ear to flutter?

 

I want to go to a higher altitude this weekend abouit 7,000 feet,. I'm sure my ears will get even full of pressure,. Is that probably a bad idea?  Maybe make my ears flutter,. huh?

0
LynnMcLaren

Registered:
Posts: 7,991
Reply with quote  #43 

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..................................................... 

 

 


__________________
Take Care

Lynn
0
jambo

Registered:
Posts: 31
Reply with quote  #44 

Hello,

 

I went to my doctor today with the new information I've gathered on the internet. He appeared to believe me, and I got referred to a polyclinic of ear surgery. Hopefully I will be able to discuss this some more there, go through some checks and get this fixed once and for all. It's great to have some progress anyway! I'll continue to post here so you'll know how things are going.

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #45 

That's great! Keep us posted!


__________________
That is my two cents.
0
DanP

Registered:
Posts: 2
Reply with quote  #46 

Re: the procedure of cutting the tensor tympani and stapedius. . . Does anyone know an ENT surgeon in Texas, esp. in Dallas/Forth Worth area, who would be familiar with it and has actually done the procedure?

0
lib

Registered:
Posts: 272
Reply with quote  #47 

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

0
JoeM

Avatar / Picture

Registered:
Posts: 151
Reply with quote  #48 
Dr. John Dickens. Arkansas Otalaryngology (Paul's doc)
__________________
That is my two cents.
0
sydny

Registered:
Posts: 4
Reply with quote  #49 

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~

 

 

0
DanP

Registered:
Posts: 2
Reply with quote  #50 

Thanks to Lib and JoeM for answering my post.  Have located Dr. Dickins as an ENT with the Arkansas Otolarygology Clinic.  That Clinic's web site has link to an extensive resource http://www.hearonline.com/library.asp . Lots of information about hearing problems in general, though specific reference to the muscle spasm possibility not found. 

Am staying away from computer whine for a few days, to see if it helps.  (Wife is answering for me!)

I do have an appointment in a couple of weeks for a discussion with the director of the Speech and Hearing Clinic connected with the University of North Texas in Denton. Will post if anything meaningful comes out of it.

0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:



This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.