Tensor Tympani Regrowth: Hearing a Click While I Speak

Damn that's so unfortunate. Would you say that your current state is preferable to the 2005 state of eardrum slingshot? Like in what disabling way is your current state different? Is your sound tolerance bad again?

The slingshot eardrum is EXACTLY what gets me the worst right now. And huge changes of pressure in the air that occur after spasms where I hear the air rushing in/out. Same as you, triggered by all outside & inside noises as well as certain muscle contractions. I have some little clicks that actually aren't there at the moment but started coming on a few weeks ago.

Also, your Pop's, are those triggered by swallowing or more than just that? I've had swallowing pop/cracks my whole life, but recently I've noticed they're louder.

I do hear lots of people describe this as having something inside their ear fucking with it. To me it feels like my ear is rotting. Like it's just decomposing away causing every possible malfunction.

Thanks so much for replying to all these its very helpful, as i'm beginning the surgery process. I live in Canada so it could take months, but I'm considering just flying to Dr Santos in Boston who has the best record of success. I was saving up for school but that's gotta get put off for this now.

 

That's the first time I've heard of inner ear fistulas. I'll look into it. I've had TTTS on and off for years now. But it seems to be worse after the PET surgery. I have a virtual meeting with my doctor from TX next week. The shims he inserted did fix my crackling by 85-95%, which probably confirmed the PET. Have you ever tried any meds for TTTS? My local ENT is recommending trying Tramadol, Cyclobenzaprine, and Zoloft, in that order.

 

Yea that's me too! Feels like the ears are rotting and decomposing. One last question sorry, I know you haven't even gotten a chance to get at the ones above, but during your 15 year break, were you able to do normal things like go to movies, concerts, house parties etc?

 

Yes, current state is preferable, but it's like being in the first level of hell vs Hitler's level. So there's that.

What I experience right now is a click when I speak, so if I don't speak, I don't get the click, unless... I move my head in a particular way, I also get the click in the ear. I get the pops which are more random, and some days are good, others are bad, some nights are good, others are bad.

Compare that to 2000's, every noise, every movement, even blinking the wrong way, light flashes, caused the spasms. The ear was reactionary to noise. It is impossible to escape noise, except like you say, being a monk, and doing everything in slow motion. And you can feel it. Really feel it. Like a tiny little troll inside your ear flicking your eardrum and you want to shove an ice-pick in there and kill the troll...

The surgery has helped many... for years after my surgeries, I stayed on the other boards (not sure they exist anymore...) to provide guidance. I figured all the hell and pain I went through shouldn't be for naught, so I was able to bring people to a diagnosis and find a doctor and get surgery. Not saying I'm some saint or something, but this surgery is now much more common than two decades ago.

If you have a doctor that has done this before you should be alright in the end. If all that you have is the spasms, then the surgery should give you relief. It did for me. Now I've got new crap to deal with. I'm sure all related, and like you said, my ear is rotting...

 

@TheOriginalJoeM

Crazy events that you have been through. I am also just outside of Chicago and have recently suffered what I think is an acoustic shock from my daughter's scream. My symptoms have progressed and I believe TTTS with a moderate level of hyperacusis is at play now. My ear gets full when being exposed to any perceived louder sound and it's terrible. I am at the point where I can barely have a conversation with my young kids because their voices are much louder now. I also get a numbing/tingling/burning sensation around my face and jaw and sometimes neck. Did you ever get these sensations with TTTS? My family and I caught COVID-19 and my symptoms only got worse during our quarantine. Before I had very mild tinnitus with some sound sensitivity. Since the virus everything started full force and I had full ears for a week. Even my "good ear" has some TTTS effects now, but no tinnitus.

Do you know of any really good doctors in the area that I can see that will actually understand my symptoms of acoustic shock. It seems every ENT I've visited has no idea what's happening.

Sean

 

Hey Sean. Sorry that are experiencing this. I know how you feel. I am isolated from my wife and kids because talking (to anyone) makes my ear click, so I sit in my own house like I don't exist.

I understand the "good ear" thing. My right ear was my good ear and really didn't have all too much of an issue. But when I cut the tendons in the left ear, "it" whatever the "it" is, moved fully and completely to my right. It was like when you hear of people losing their eyesight, their hearing takes over... well, that's what I felt like happened to me. Because it couldn't manifest in the bad ear, it did in the good one.

I do not have H, but do have T. The T doesn't bother me so much, but I know for many it does.

Regarding the sensations, it was so long ago, that I don't recall much about tingling or burning, but I did have the classic sensation of auditory fullness, swelling, etc.

There are several good doctors. Obviously you need an ENT surgeon if you wanted the surgery for TTS. I see Doctor Robert Battista in Hinsdale for that. He did my surgeries in 2019 and 2020. Dr. Timothy Hain is not a surgeon, but this man is about as bright as one could be and is world renowned and on Top Docs list. You can mention his name to almost any type of doctor, they have heard of him. He works out of NorthWestern, and it takes about 4 months to see him. But he does about a 2-3 hour total and complete workup of you. One of THE best doctors in the world. He confirmed my diagnosis of TTS in 2004 in literally minutes. He would be the one I would start with.

I would also suggest trying Rush Hospital. I'm going to see a doctor there on Monday as they have some of the best and brightest. My guy at Rush is more a specialist in e-tube dysfunction, so probably not the doc for you.

Also check out this list of surgeons who do the surgery https://fauquierent.net/earspecialist.htm

 

@TheOriginalJoeM

Thanks for the reply. I am seeing an ENT tonight, actually Dr. Garrity in Elk Grove. He did my tonsillectomy surgery many years ago and is a trusted doctor. However I have been to multiple ENTs so far and they diagnosed me with probable TMJ. Now I get this and I probably have it to some extent but I went as far as emailing the most prevalent researcher audiologist for acoustic shock, Myriam Westcott, and she said I have all the symptoms of acoustic shock. What is troubling is that all these symptoms were delayed and now I'm experiencing them at full force. A lot of it has to do with anxiety and stress I am sure which creates a lot of the TTTS reactions. However I also have hyperacusis which is worse and it makes my ear continually full due to noise and all the tingling burning stuff comes with it too. I think it is trigeminal nerve irritation that is constantly aggravating my symptoms.

I will try for Dr. Hain maybe. Thanks for the info.

Sean

 

I likely have TMJ too but I've heard there isnt much one can do about it. I clench my jaw and it is always painful and I believe stress is the major factor and I agree that it somehow related to the trigeminal nerve.

 

How was your life for the 15 years after surgery? Were you able to be in loud places like movies/bars etc?

 

At first it was a mental thing... I was conditioned to believe I couldn't be at any loud places because the tendons serve as natural sound protection (and they do) so I believed I could not tolerate aces like that...but over time I realized it wasn't true and a lot of it was in my head. No I can't be at a rock concert in the front row without plugs but being in a crowded bar is fine. I basically lived my life without even knowing I was any different.

 

I have my first appointment in the process on Tuesday, getting referral to a surgeon for this finally.

Can I just ask a you a couple more questions please?

1. Did you have tinnitus before your first surgery? I have a lot of tinnitus sounds, some of which I can make louder by yawning or clenching which tells me they could possibly be relieved by surgery

2. Do you think your condition started from noise damage/overexposure? I was a musician so the cause is pretty obvious for me. I'm expecting the surgery to eliminate the eardrum slingshot and body-noise induced spasms, but expecting a boost in non-muscle-activated tinnitus sounds.

Personally I don't believe our cochleas are any more damaged than the next person with similar noise exposure. I think it's far more a muscular dysfunction in response to that damage. And it seems like because the tensor originates from the Eustachian tube, it can cause a vicious cycle where Eustachian tube issues arise after overactivity of the tensor. Too much positive/negative pressure in the ear from a falsely opening e tube just causes more dysfunction & potentially damage. I also think because the muscles pull too frequently & clearly too hard, it could "loosen" the foundation of the bones in the ear, causing them to be hyper-mobile. From what I understand, the movement of those bones naturally amplifies sound waves to the cochlea, over 8x as loud as the original signal. It's possible that people who have Myoclonus/TTTS + Hyperacusis are receiving over-amplified sound to the ear. If the bones are amplifying 8x, even a small change in their mobility could totally cause some problems.

Thanks so much for replying, it means a lot.

 

I probably had tinnitus before the surgery, but in 2004/5 during my first surgeries, I had no additional tinnitus after I healed from the surgery. Post-op, you will hear lots of distressing sounds (e.g.: pops, etc., which are normal healing sounds). Of course with any surgery, there may be complications which they have to tell you about. Luckily if your surgeon isn't a day-drinker, the % chance of long-term side effects are very low.

I've speculated, researched and discussed with others for years why I could have this (TTTS), and ultimately, we may never know. What I found through all of that was no one had anything similar we could all point to and say, that was likely the cause. Even doctors have no clue. I would focus more on and look forward to getting rid of the spasms and living life TTTS-free. . My newer tinnitus was caused by a loud noise from an external source directly in my ear.

By the way, my clicking has gone away. It is nearly 95% gone. I was throwing everything at the wall to see if anything worked. I tried chiro (I think they are mostly quacks), drinking lots of Gatorade (low electrolytes), additional vitamins/minerals (maybe deficient in some), among other things. But I also stopped taking ibuprofen on a regular and way-too-much basis. Once I stopped that, things started to get better. I finally went running yesterday, but still got the clicks when I ran, with each footstep. But at least I can talk without click click click click...

I have an MRI of the brainstem today. Add in some more radiation to my overall levels LOL and loud MRI noises for an hour to find nothing I'm sure. HAHA

But if staying off Ibuprofen and any other OTC NSAID is what is going to keep it at bay, hell... I'll never touch one again!

Good luck with your referral and keep me posted.

 

@TheOriginalJoeM

I've never posted here before. I found your account of your struggles because I deal with the same problem or at least similar.

I had surgery at OHSU in Portland Oregon for middle ear myoclonus on my left side in November of 2018, just 4 months after having my second daughter. I had been dealing with the myoclonus on a limited basis for a couple of years before, but at 3 weeks postpartum it started and continued for 4 months. Not “nonstop” but much of the day each day. Some days were better than others.

Anyway, I had the surgery to cut both tendons on the left side, using a scope through the ear canal after lifting the eardrum. It gave relief from the myoclonus but unlike you, I had hearing differences post op. The best way I can describe it is that my eardrum feels “loose”. It feels much mobile than before and many sounds, especially thumps and thunks and deep sounds create the sensation of movement on my eardrum sometimes in a way that feels just like the myoclonus did. I don’t know if it is the result of my eardrum having been lifted and reset or if it’s a natural consequence of no longer being stabilized by the two muscles. Perhaps if I had had it done on both sides, the difference between the two ears wouldn’t be so noticeable. But I don’t know.

I had relief at least from the myoclonus for about 2 years until this November. It started as an episode or two again that felt just like it had originally. BUT I had been back to see the surgeon who did my surgery once already and he ASSURED me that the muscle wouldn’t grow back...

Seeing your account, it seems he was either ignorant or unwilling to admit that is absolutely possibly the case. As far as I know he didn’t insert any kind of block which I’ve read is one option, or like you said, cutting a length from the center to create a gap. Having returned to him a third time to report what was happening along with some hyperacusis problems, he basically said, it must be TMJ, and said he would refer me to a specialist, and a Cognitive Behavioral Therapist, neither of which he has ever referred me.

Needless to say I am looking for a new doctor who can confirm the regrowth of the tendon and cut it in a way that it will not regrow. How do they confirm the regrowth? Or is it just confirmed during surgery? I am in Southern Oregon but thanks to your list that you posted, am trying to get referred to a doctor in Newburg Oregon to see if he can help.

I just so so appreciate you and your willingness to document your experience and be helpful to those of us struggling along in the dark trying to deal with these problems. I was just wondering if you have any more advice for me and if my plan seems sound or if there’s something else I can be doing/somewhere else I should go.

 

So yes, because your eardrum was lifted, it is very possible that your eardrum may feel loose, precisely because they did lift it and reattach it. Do not let your doctor ever tell you what you feel. Those doctors are not worthy of holding a medical license. You are correct that because you do not have the stabilizer tendons attached, you could be feeling this looseness from that.

So, I am living proof of the tendon regrowing. Twice. Confirmed scientific and medical proof. So any doctor who says it is not possible (even if it had never happened before) is also not worth their salt, because, well, look around, there is so much we do not know medically and things are possible, although not probable. There are too many doctors who have large egos and KNOW everything. Those doctors are not worth your time either. You know when you find a good doctor, because they LISTEN.

The doctor I have been going to did a very specific CT scan in a very specific way that he required me to do with his hospital with one person who worked there, because he told me that whenever other patients went to another hospital to do this scan, the CT worker did it wrong. Basically, the scan indicated, but was not conclusive, that it had regrown (this was the first time it regrew). That time he went back thru the eardrum. The second time, we did not do a CT. He went behind my ear, cut a one inch incision behind my ear and drilled through the skull to get better access to see the tendon, since going through the eardrum it is partially blocked by the skull.

This is much more invasive and I lost about 40% of my hearing, increased T (but not too much) and my ear is less "flexible" and closer attached to me skull, and it is sensitive in the sense that it slightly painful to the touch while at the same time being numb.

 

Has anyone ever heard of stapedial tenotomy being done through a perforation in the eardrum, instead of cutting around/lifting the whole eardrum like a flap?

 

@TheOriginalJoeM

You lost 40% of your hearing? That’s very discouraging... I guess I assumed you had few side effects from the surgery. I’m at a loss because I’m now experiencing it in both ears and I was considering having it done in both sides. But now I don’t know.

Have you been satisfied with the results? Was the trade off worth it? Is there potential for your hearing to return? I guess I’m asking would you recommend it...

Of course only I can decide if I’m willing to take the risk but it helps to know your opinion.

 

Hi Rainfall. Yes, I did lose some hearing. The doctor tells me it is not 40%, but more like 20%. Either way, it was a real possibility that I was well aware of and 100% willing to take the risk for, even expressing that I would gladly lose my hearing over having TTP. For me, it was quite an easy decision. I went through H-E Double Hockey Sticks with this disease so there was not really any question for me. But each person must weigh the pain they suffer vs. the potential for side effects. Again, I was told there was a small percentage I could lose my hearing, but if you look at the flip side, there was a large percentage I would not. But surgery always presents risk. Each time I've had surgery, the doctors have always told me there is a risk of death. Well of course there is. But thousands undergo "elective" surgery everyday.

Knowing what I know from my own experiences and others over the 15-20 years I've suffered from this and talked about it to others, the risks for most I believe are worth it, especially if you do the eardrum type surgery. It is very possible that if you choose to do that type again, and the tensor tympani did regrow, cutting it the second time might be the last. That is also an option. Again, the tensor tympani is not supposed to regrow. I'm just some weird freak of nature LOL!

Just to be clear, the hearing loss was only when they went behind the ear. I had literally no side effects when they went through the ear canal.

And yes, my doctor did say over 1-2 years my hearing might improve some.

 

Sorry, I have not. Based on what I know, I do not think this is an option based on what needs to be done, because they do need to get tools in there to cut it, and a simple small incision would not allow it. I do also believe (and this is of course not a medical opinion) is that the incision is in fact more risky than lifting the eardrum, as the incision can become a permanent hole and initial hyperacusis.

 

@TheOriginalJoeM- i know this post was from awhile back but just curious to see if your clicking has resolved completely? I have had noise trauma from an mri machine and developed t. Shortly after I got muffled hearing off and on and constant click long and popping in my ears when I talk or chew. Sometimes it just clicks randomly. I’m trying to figure out if this is Etd or ttts. Tia for your help

 

I am new to this board, but in reading your posts on this thread, your story sounds incredibly similar to mine. The only difference is how our crackling when swallowing started, as mine started after an ear surgery. I even went the same path with calling Dr. Poe, and being given some doctors in his network. I drove a 500 mile round trip to be told I couldn’t be helped. Like you, I know about the dangers of balloon dilation, so I have avoided it. The stent surgery you received could be a life changer for me. Can I please ask the name of the doctor in Texas who performed your surgery? Thank you very much in advance.

 

Hi. Sorry that you are going through this PET hell like me. It makes tinnitus seem like a walk in the park. My doctor in TX is Marc Dean. He is in Fort Worth. My surgeries have produced limited improvement, so I may not be the best one for advice.

 

Thank you very much for taking the time to reply. I am very sorry that you are going through this too.

 

Thank you.

 

Hi everyone,

Thank you for all this precious information. It's such a relief to find people with similar symptoms, that have gone through different surgeries and tried different things. Same here, ENTs usually don't know much when it comes to the more unusual cases and don't have the time or will to help you research.

I've had a crackling/fluttering/itching sound in response to noise for about two years now. And since this year, I also experience a crackling sound whenever I swallow or yawn. It's sometimes better, sometimes worse. I've had a middle ear inspection but they didn't see anything out of the ordinary. I'm pretty sure that I have TTTS, but no ENT has diagnosed me with it yet. And I've seen about ten ENTs now.

After reading your stories, and after having spoken to yet another ENT last Friday, my next surgical step is going to be the sectioning of the Tensor Tympani. I'm not sure if I want to do the Stapedius muscle yet (the ENT is advising against that) so this one will go first, and we'll see if that solves my problems. Next step would either be sectioning the Stapedius muscle too, or getting an operation done at the Silverstein Institute in Florida. They supposedly strengthen the muscle. Still waiting to hear from them.

And I'm also getting therapeutic help starting tomorrow, and getting dental work done. That might indirectly stop putting pressure on my trigeminal nerves. I haven't really tried muscle relaxers yet, since I haven't read many stories that it helps at all.

@vttbx, did the surgery with the stems on your Eustachian tube help with the crackle when swallowing or no? It seemed to have worked in an earlier post, so I was wondering what the end results were. I still think my crackle also has to do with my Tensor Tympani being out of wack.

@TheOriginalJoeM, are you still active on Tinnitus Talk? I would love to learn more from you if that's possible. You seem to have over 20 years of experience on this matter, with different surgeries done.

If I can help anyone with my research, let me know!