Tensor Tympani Regrowth: Hearing a Click While I Speak

[TheOriginalJoeM]

Hello all,

I believe some of you have read through posts here and on other boards. I used to have the handle "JoeM", and posted a lot with Lib. This was in the early 2000's and spent four long years suffering immensely from TTTS and stapedial myoclonus, in both ears. Mainly in the left. I had the surgeries to cut both tendons, in both ears and have never looked back. For almost 15 years the surgeries had appeared successful. No noise induced or any other type of spasm occurred. Then all of a sudden last August my left eardrum started spasming again, badly. Because the original doctor who had done the surgeries had retired I had to find a new doctor, which took a while and he did a special MRI to see if the tendon was still there. It had appeared to have regrown. We opted for the surgery and indeed it had regrown, and he cut it. Surgery seemed successful last December.

Fast forward to August of this year, and I'm now starting to hear a click while I speak. It doesn't always happen, but quite frequently. If I taper my voice and speak very softly and/or monotonously, it seems to reduce the frequency, but I'm going insane again.

I went back to my doctor who had done the surgery last year and this time he put me on Valium. It has calmed my nerves some, but done very little to stop the clicking I hear when I speak. I rarely will hear (and even may feel it), the click, without speaking. It regrew once, so it could regrow again. I'm honestly hoping it did regrow, because at least there is a cause and it can be fixed (again). However, I have my follow up appointment on Monday. He told me during my first appointment that if he did another surgery, he would this time drill a hole through my skull so he could get better access to the Tensor Tympani and cut it in two places, since going in through the eardrum allows only restricted access to the Tensor Tympani because it is behind the malleus. Obviously a much more invasive surgery.

I'm hoping he will perform the surgery and I'm hoping that it did regrow and he will be able to cut it in two places.

But I'm curious as to anyone else here who has had the surgery have discovered any of the tendons have regrown?

I'm also curious as if after the surgeries, if the problem has still persisted, what else have you done?

Thanks,

JoeM

 

[TheOriginalJoeM]

Has anyone had any good results from natural remedies? I've begun reading again and obviously anxiety and stress will impact the severity and frequency, so I've read that magnesium-citrate, vitamin-B, vinpocente, and/or ginkgo-biloba reduce anxiety and blood flow to the inner ear which may help.

 

[Tweedleman]

My TTTS is a lot milder than yours, but I find clonazepam with muscle relaxers is the only thing that somewhat suppresses the earpopping. When I went off of clonazepam for a while, it rebounded.

I also tried Curcumin, Astaxanthin, Mag, B12, NAD+, Zinc, and NAC. None of it did a thing for TTTS. NAC is the only one I still buy.

 

[TheOriginalJoeM]

I recently started doing some jaw exercises whereas I pull the lower jaw straight towards the back of my head such that there is a wider gap between the top and bottom teeth. It is supposed to stimulate and therefore relax the muscles up and around the jaw, include the tensor muscles (tensor tympani, tensor veli pallitini). I can say that symptoms have significantly improved over the last 4 days that I've been doing this. Alas, it is not gone completely, but at a tolerable level. I also started taking magnesium supplements as I've read those may have an impact.

However, I am going to go back in for surgery. Severing the tensor tendon is a simple procedure, which I've now had performed twice on my left ear, because it had reattached itself. This is the body's natural reaction. And because the tensor tendon is vertical, severing it would essentially only leave an extremely microscopic severing between the two "slices", so it would make sense it can reattach. Additionally, since much of the tendon is behind the malleus, it is difficult to slice it in two spots, so this time the surgeon is going to go behind the ear through the bone.

I honestly hope it has reattached. As I've discovered through my trials, and essentially confirmed, the reason I'm not reacting to external sounds is because this is more the focus of the stapes tendon which is confirmed "gone" (aka: still severed). The tensor tympani is still a misunderstood muscle and is likely more engaged in other functions, and seems to be reactive to movement, such as the jaw moving for talking, chewing. I also feel it at the beginning of a run for about a quarter mile then it shuts off. It's honestly odd to tell you the truth.

 

[lis]

@TheOriginalJoeM

Do you hear the distortion with external sounds (what types?) as well as your voice?

Can you get the surgery if the eardrum does not dimple as viewed by an otoscope?

Have you had any adverse effects from the surgery ?

I have been told that I may have TTTS middle ear myoclonus, but I am intrigued by your statement that tensor tympani reacts to internal sounds while stapedius reacts to external.

The explosion/crunching snow distortion that I hear is sound-activated by both internal (my voice/cough/sneeze/eating) AND innumerable external sharp/impulse sounds (lightswitch, plastic lids, dish, keys, doors, paper, bags, metal, etc). I immensely appreciate any input you have as I am in severe distress over this symptom that is akin to being constantly socked in the ear.

 

[TheOriginalJoeM]

@TheOriginalJoeM

Do you hear the distortion with external sounds (what types?) as well as your voice?

Can you get the surgery if the eardrum does not dimple as viewed by an otoscope?

Have you had any adverse effects from the surgery ?

I have been told that I may have TTTS middle ear myoclonus, but I am intrigued by your statement that tensor tympani reacts to internal sounds while stapedius reacts to external.

The explosion/crunching snow distortion that I hear is sound-activated by both internal (my voice/cough/sneeze/eating) AND innumerable external sharp/impulse sounds (lightswitch, plastic lids, dish, keys, doors, paper, bags, metal, etc). I immensely appreciate any input you have as I am in severe distress over this symptom that is akin to being constantly socked in the ear.

Hi Lis. I do not hear distortion with external sounds now. I don't believe I had any distortion per se back when I was having the original symptoms before my first surgeries. It was all a physical spasm in reaction to noise (sharp external impulse sounds), and reaction to light, sneezing, movement, etc. just as you describe.

The distortion sounds, I believe, is likely more a symptom of P.E.T. (patulous eustachian tubes). But then again, having spasms is certainly an opportunity to cause distortion.

During my first surgeries in or around 2005/6, the surgeon did see huge dimpling in my ear drum while we did some "testing", by dropping objects or hitting things that normally caused the effects. Regarding any adverse effects, this is now the fifth surgery I've had, and I do not have any adverse effects.

Honestly, if you feel your ear drum pulling, you likely have myoclonus, but that would be to discuss with your doctor. The stapes is bigger tendon (10x the size of the tensor) and such has greater "pulling" power. I did ask my current doctor and he did fully agree that the stapes, at least what medical science and doctors know today, is the stapes is generally more for sound but the tensor they know very little about. I personally believe that the noise-induced spasms were more related to the stapes and the tensor-induced spasms were more related to things like movement (e.g.: turning my head, chewing, talking, blinking my eyes -- this last one is well-known, it's called something like the double-effect of muscle spasms). Because my stapes did not grow, I've not had any issues for the last 15 years with sound-related spasming. But what is weird is that the tendon likely regrew immediately after my first surgery but didn't do anything. Odd. Weird. Then just started up again last year. After he cut it last year, it clearly did the same thing, since my surgery yesterday confirmed it had regrown.

In fact, while he was cutting it this time, he saw it was trying to reattach during the surgery. Except this time he went behind the ear to get better access to the tensor. Going through the ear drum doesn't give good access to the tensor because it is half-way hidden behind the malleus so it doesn't allow it to be cut in two spots to provide for a gap so it cannot regrow. Because the tensor is a vertical tendon, the physics behind its regrowth is likely due to the fact that the natural reaction of the body is to heal itself after an injury (being cut), and the natural reaction of a vertical column is that a horizontal cut would just allow the cut pieces to basically have gravity to help heal it because the top half of the tendon is hidden, so it just dangles back down to reattach to the bottom, because the part that is cut is close to the bottom. The stapes tendon on the other hand is a horizontal tendon so when it is cut the two "halves" fall and provide a natural gap.

I can tell you that I was put on valium and I do believe after 3+ weeks it finally reduced the spasming in the tensor, but I still had mild symptoms. Because I believed the TT regrew and had a doctor willing to cut it, I opted for that. I did have a couple of times during my sleep an "explosion" type of spasming that was so bad it woke me up. I believe the tensor muscle went berserk for whatever reason. Ultimately, the underlying cause is completely unknown and still there even if you cut the TT and/or stapes, but for me after being cut, it did eliminate the spasming. That I can tell you.

 

[GoingGrayy]

Hi Lis. I do not hear distortion with external sounds now. I don't believe I had any distortion per se back when I was having the original symptoms before my first surgeries. It was all a physical spasm in reaction to noise (sharp external impulse sounds), and reaction to light, sneezing, movement, etc. just as you describe.

The distortion sounds, I believe, is likely more a symptom of P.E.T. (patulous eustachian tubes). But then again, having spasms is certainly an opportunity to cause distortion.

During my first surgeries in or around 2005/6, the surgeon did see huge dimpling in my ear drum while we did some "testing", by dropping objects or hitting things that normally caused the effects. Regarding any adverse effects, this is now the fifth surgery I've had, and I do not have any adverse effects.

Honestly, if you feel your ear drum pulling, you likely have myoclonus, but that would be to discuss with your doctor. The stapes is bigger tendon (10x the size of the tensor) and such has greater "pulling" power. I did ask my current doctor and he did fully agree that the stapes, at least what medical science and doctors know today, is the stapes is generally more for sound but the tensor they know very little about. I personally believe that the noise-induced spasms were more related to the stapes and the tensor-induced spasms were more related to things like movement (e.g.: turning my head, chewing, talking, blinking my eyes -- this last one is well-known, it's called something like the double-effect of muscle spasms). Because my stapes did not grow, I've not had any issues for the last 15 years with sound-related spasming. But what is weird is that the tendon likely regrew immediately after my first surgery but didn't do anything. Odd. Weird. Then just started up again last year. After he cut it last year, it clearly did the same thing, since my surgery yesterday confirmed it had regrown.

In fact, while he was cutting it this time, he saw it was trying to reattach during the surgery. Except this time he went behind the ear to get better access to the tensor. Going through the ear drum doesn't give good access to the tensor because it is half-way hidden behind the malleus so it doesn't allow it to be cut in two spots to provide for a gap so it cannot regrow. Because the tensor is a vertical tendon, the physics behind its regrowth is likely due to the fact that the natural reaction of the body is to heal itself after an injury (being cut), and the natural reaction of a vertical column is that a horizontal cut would just allow the cut pieces to basically have gravity to help heal it because the top half of the tendon is hidden, so it just dangles back down to reattach to the bottom, because the part that is cut is close to the bottom. The stapes tendon on the other hand is a horizontal tendon so when it is cut the two "halves" fall and provide a natural gap.

I can tell you that I was put on valium and I do believe after 3+ weeks it finally reduced the spasming in the tensor, but I still had mild symptoms. Because I believed the TT regrew and had a doctor willing to cut it, I opted for that. I did have a couple of times during my sleep an "explosion" type of spasming that was so bad it woke me up. I believe the tensor muscle went berserk for whatever reason. Ultimately, the underlying cause is completely unknown and still there even if you cut the TT and/or stapes, but for me after being cut, it did eliminate the spasming. That I can tell you.

So you've had multiple tendons cut multiple times, and no side effects? No tinnitus, hearing loss, or hyperacusis? That's very reassuring if so...

 

[TheOriginalJoeM]

So you've had multiple tendons cut multiple times, and no side effects? No tinnitus, hearing loss, or hyperacusis? That's very reassuring if so...

I have had the tensor tendon in the right cut once, the stapes in the right cut once, the stapes in the left cut once, and the tensor in the left cut now three times (hopefully the last). I have a feeling the tensor in the right regrew immediately after my first surgery in 2005, given what has happened in the left. For me, the left side has and was always the worse side.

After what is now one surgery on the right (cut both stapes and tensor during the same surgery) and the 5 on the right (first surgery cut stapes, second surgery cut tensor, then two other cuts on the tensor, plus a surgery a couple of years before by a doctor who thought I had a fistula that didn't exist), I've had no long-lasting effects. I do have tinnitus, but I've had that for a long time and it doesn't bother me. Very little hearing loss. In fact, the hearing loss is non-existent in actual hearing tests, and during normal daily activities I notice no hearing loss, however, if I do put my right ear down on my pillow while watching TV, the sound can be a little muffled, but not a lot. Again, it's so very minor, it's not even a passing thought for me. No hyperacusis.

I will say that the days following surgeries are a bit weird. The normal effects of the surgery of course cause hearing loss due to the inflamation and blood and healing that goes on inside the ear, not to mention the packing. There is of course increases popping due to any ear surgery, which is unnerving, but it is due to pressure and healing, and not to anything else. That goes away too within a few days. The other weird thing is that sounds seem muffled and loud at the same time, while the healing process is happening. That has always gone away too.

So if you want a straight answer, I've honestly not had any side effects that have been lasting and/or were not just part of the normal healing process.

I just wish we knew to cut the TT in two places from the start. Had I known back in 2005 and in 2019, I would have not gone through the ear canal and done this surgery, where he goes in behind the ear. More invasive, but allows full access to the TT to be able to cut it leaving a gap in between.

 

[TheOriginalJoeM]

I have had the tensor tendon in the right cut once ... able to cut it leaving a gap in between.

Just an update. I had the surgery about 10 days ago and he cut the tendon but I am hearing the same "clicks" I heard before the surgery. These are not the normal post-op pops I'm used to hearing that will go away.

I did fear this going into the surgery because this time around the noises (clicks) seemed different and I was not feeling the pull on the ear drum, but I elected for the surgery because 1) the tendon did regrow once, so it could regrow again and be causing the problem and 2) if it got cut and I still had the issue, I'd know now for certain it would be something else since he totally obliterated the TT. The noises too sounded different (clicking and knocking) before the surgery vs the snapping I had in the past. I believe I NOW have palatal myo and that the tensor tympani muscle and/or the tensor veli palatini are spasming and internally I'm hearing the click. This click lines up to all the other research I've done so it only makes sense that I'll never get relief.

Since the muscle cannot be cut or removed, I will be looking into a doctor who can inject botox into the upper palate or through my nose. I will also be looking into an NTI mouthguard which is supposed to stop the user from clenching his/her teeth and causing those muscles to tighten and finally relax. But this could take months or longer.

The strange thing is most of the clicks are heard only when I talk and is relatively quiet elsewise, except a few random ones here and there. Anyone else have similar issues?

 

[musicblue]

Just an update. I had the surgery about 10 days ago and he cut the tendon but I am hearing the same "clicks" I heard before the surgery. These are not the normal post-op pops I'm used to hearing that will go away.

I did fear this going into the surgery because this time around the noises (clicks) seemed different and I was not feeling the pull on the ear drum, but I elected for the surgery because 1) the tendon did regrow once, so it could regrow again and be causing the problem and 2) if it got cut and I still had the issue, I'd know now for certain it would be something else since he totally obliterated the TT. The noises too sounded different (clicking and knocking) before the surgery vs the snapping I had in the past. I believe I NOW have palatal myo and that the tensor tympani muscle and/or the tensor veli palatini are spasming and internally I'm hearing the click. This click lines up to all the other research I've done so it only makes sense that I'll never get relief.

Since the muscle cannot be cut or removed, I will be looking into a doctor who can inject botox into the upper palate or through my nose. I will also be looking into an NTI mouthguard which is supposed to stop the user from clenching his/her teeth and causing those muscles to tighten and finally relax. But this could take months or longer.

The strange thing is most of the clicks are heard only when I talk and is relatively quiet elsewise, except a few random ones here and there. Anyone else have similar issues?

I have been experiencing a click too when I speak in my left ear. It tends to not be there first thing in the morning but during the day it comes about is there 80% of the time. The click sound always happens after a spoken word and is infuriating. I also think it's the muscle you pointed out and am considering maybe Botox if it continues. I managed to make a recording of mine from my iPhone so I know it's something physical happening.

 

[TheOriginalJoeM]

I have been experiencing a click too when I speak in my left ear. It tends to not be there first thing in the morning but during the day it comes about is there 80% of the time. The click sound always happens after a spoken word and is infuriating. I also think it's the muscle you pointed out and am considering maybe Botox if it continues. I managed to make a recording of mine from my iPhone so I know it's something physical happening.

Really?! Wow, that's fascinating. You made a recording? So you (and others) and obviously your cell phone can pick it up and hear it? I've not asked if others can hear my clicks, because to me they do not seem loud enough that others could even hear them, especially if I'm talking at the same time.

Is there a way you could private message me and send me the recording? Obviously, no obligation and I'm just a stranger on the Internet, but I could maybe confirm if you are hearing the same click as me.

Where do you "feel it" or just hear it?

 

[TheOriginalJoeM]

Edits

Sorry tried to edit and went over the 30 minute edit time.

Edit: sorry that's presumptuous and I don't want you to feel uncomfortable so disregard the ask of sending the file.

Where do you "feel it" or just hear it?

Edit: some other question: do you only hear it when you speak or does it have 10% or so random clicks? I will hear the clicks mostly 80-90% of the time when speaking, but it can happen randomly but also when I turn my head to the right, but only when I'm not thinking about it. If I try and recreate the same movement, it won't do it.

Are you also able to minimize the clicks if you speak in a certain way, like very softly or monotonously? Or perhaps by breathing out at the certain points (sorry, no other way to describe it...).

Just found this: https://n.neurology.org/content/41/10/1677
We report the successful treatment of a rhythmic, continuing ear click in a patient with palatal tremor with local injections of botulinum toxin into the tensor veli palatini muscle. We could demonstrate that the ear click occurred during contraction of the tensor veli palatini, which opens the eustachian tube. Therefore, we believe that the clicking noise is due to the sudden breakdown of the surface tension within the eustachian tube. Our observations suggest that the ear click is due to rhythmic discharges of the trigeminal nucleus rather than the ambiguus nucleus.

• © 1991 by the American Academy of Neurology

I just also found a site that lists out surgeons by state that perform the TT and stapes tendon cutting surgeries if interested. (not to be confused with the palatal clicks per this conversation).

https://fauquierent.net/earspecialist.htm

 

[TheOriginalJoeM]

I have been experiencing a click too when I speak in my left ear. It tends to not be there first thing in the morning but during the day it comes about is there 80% of the time. The click sound always happens after a spoken word and is infuriating. I also think it's the muscle you pointed out and am considering maybe Botox if it continues. I managed to make a recording of mine from my iPhone so I know it's something physical happening.

So an update. Mostly to rant, because I'm so tired of this. It's ruining my life. I don't speak for days at a time, but mostly weekends, because I have to talk during work.

Last week after I had been using Flonase and taking heavy doses of Mucinex-D, I was able to speak without clicks for nearly the whole week. I still had a lot of ear popping and the distinct clicks when I moved my head, but I figured, if I could talk without the clicks, it was something, and I could try and live with the motion clicks. But then today, like you, I started of great and within 1-2 hours it came back completely.

I sought out a neurologist who specialized in hemi-facial spasms and botox, but it was a waste of my time. She listened and was kind, and I did tell her I've been getting muscle spasms all over the rest of my body, about 10x more than I've had before. I expected maybe some tests or something, but nothing. She couldn't do the botox, said she wasn't trained for palatal myoclonus (which I really really doubt I have) or botox unless she could see the muscle spasm.

My ENT told me that my reasoning that it could be my e-tube clicking together made sense and he would put grommets in if I wanted. I told him I'd use the OTC meds for 2 weeks since it seemed like they were working. It's so irritating (and I see it everywhere I search on the Internet) is that we know more than the doctors! I thought even though doctors were specialists, they understand the very basics of the human body, such as muscular structure, skeleton system, nervous system. I mean, it's not like they don't have the background to at least come up with theories???!!!

So know I've been sent to another neurologist who specialized in movement disorders (because when I move my head I get the clicks...) and will likely just waste my time and money there. I'm thinking about going to an orthopedic surgeon, but none of them specialize in head and neck, it's all sports injuries, so I'm likely to hear "sorry I can't help you".

 

[musicblue]

So an update. Mostly to rant, because I'm so tired of this. It's ruining my life. I don't speak for days at a time, but mostly weekends, because I have to talk during work.

Last week after I had been using Flonase and taking heavy doses of Mucinex-D, I was able to speak without clicks for nearly the whole week. I still had a lot of ear popping and the distinct clicks when I moved my head, but I figured, if I could talk without the clicks, it was something, and I could try and live with the motion clicks. But then today, like you, I started of great and within 1-2 hours it came back completely.

I sought out a neurologist who specialized in hemi-facial spasms and botox, but it was a waste of my time. She listened and was kind, and I did tell her I've been getting muscle spasms all over the rest of my body, about 10x more than I've had before. I expected maybe some tests or something, but nothing. She couldn't do the botox, said she wasn't trained for palatal myoclonus (which I really really doubt I have) or botox unless she could see the muscle spasm.

My ENT told me that my reasoning that it could be my e-tube clicking together made sense and he would put grommets in if I wanted. I told him I'd use the OTC meds for 2 weeks since it seemed like they were working. It's so irritating (and I see it everywhere I search on the Internet) is that we know more than the doctors! I thought even though doctors were specialists, they understand the very basics of the human body, such as muscular structure, skeleton system, nervous system. I mean, it's not like they don't have the background to at least come up with theories???!!!

So know I've been sent to another neurologist who specialized in movement disorders (because when I move my head I get the clicks...) and will likely just waste my time and money there. I'm thinking about going to an orthopedic surgeon, but none of them specialize in head and neck, it's all sports injuries, so I'm likely to hear "sorry I can't help you".

I'm in a similar position. I'm on Flonase too but from what I read it doesn't affect Eustachian Tubes and is more for colds/sinus issues. It's a way the ENT can give something I guess that may work. Another ENT is going to check my Eustachian Tubes with some camera thing and the other didn't know but is going to get back to me with his thoughts as he has my recording. He also doesn't think is palatal myoclonus because it would be clicking all the time, not just after air movement. He had never seen my problem before and knew about Botox as a solution but was reluctant to inject at this point if he can't see the problem. Personally I think the problem is related to the E tube and/or the 5 muscles or so connected to it.

I could get rid of mine it would be a big positive in terms of the affecting issues as it's very intrusive and distracting. I think a lot of ENTs learn about things they can treat and the rest of the enigmas it's up to us.

 

[TheOriginalJoeM]

I'm in a similar position....I could get rid of mine it would be a big positive in terms of the affecting issues as it's very intrusive and distracting. I think a lot of ENTs learn about things they can treat and the rest of the enigmas it's up to us.

I agree with you. I also believe this is an e-tube problem but it is inter-related with the other muscles and nerves. At least when I explained my theory to the neurologist, she at least agreed and said it did sound like I needed a doctor somewhere in between an ENT and neurologist. I know there are neurotologists, but I've already seen one.

It's irritating to me that we know that there IS a problem. There IS something happening. There IS something wrong with our bodies. Something IS causing it. But then when we see doctors, it is like, well, that is outside the scope of my daily practice and I just treat the "normal" stuff. Heck, if I treated every problem like this where I worked, I'd be fired! If there is a problem, there is cause, it's about that simple. Now...figuring it out might be more difficult, but only looking within the current view might not always achieve any discoveries.

I did tell the neurologist that while I'm not as smart as her, and I'm not a doctor (like I even have to say such things), I said to her that in the early 2000's when my MEM started and progressively got worse, I had seen 2-3 dozen doctors, and had done all of my own research and come to my own conclusion, which I then sought out to confirm. Lo and behold when I saw one of the best ENTs in the world at Northwestern, within 5 minutes he confirmed it. However he told me that he didn't do surgery but could recommend an ENT that did. So I made the appointment with the ENT, but I had to convince HIM! Luckily though, I was able to prove my eardrum was spasming, as my MEM was so bad, it was easily seen by any sound.

I fear this journey will be the same. Years of a bunch of worthless doctors pushing "I don't know's", or "I'll refer you", or "Stop talking", or "Just live with it", or "Try this" or some other cockamamie reply like "Stop using Q-tips and it will go away" (yes that last one is true...). In fact, before I found the doctor at NW, I had an ENT who theorized I had a fistula (a hole) on my cochlea. He did surgery. On post-op, he asked how I was doing. I told him I was the same as before my surgery. His response, verbatim, "No you're not, I fixed you." After about what seemed like 2 minutes of me speechless, I got up and walked out.

 

[TheOriginalJoeM]

I'm in a similar position.

I have been looking into balloonplasty or eustachian tube dilation.

Eustachian tube balloon dilation is has been proven effective in several peer-reviewed studies.

• 99.7% Dilation access rate.
• An improvement from 13.9% (control) to 51.8% normalization of the tympanogram (a measure of middle ear pressure).
• A greater improvement in the quality of life – based on ETD questionnaires.

https://www.spirehealthcare.com/treatments/ear-nose-and-throat/eustachian-tube-balloon-dilatation/
Approximately 1% of the population suffers with pressure symptoms in their ears. For some people this is only troublesome when flying, due to an inability to equalise the pressures within their middle ears as the flight descends. However, for others it can cause problems at other times, particularly after a cold or sinusitis, when it can be associated with hearing problems, ear popping, crackling or tinnitus.

These symptoms are thought to occur due to inflammation and narrowing of the Eustachian tube, which links the middle part of the ear with the back of the nose. Collectively these symptoms are termed "Eustachian tube dysfunction."

These symptoms are usually treated with over-the-counter steroid drops or sprays; however these can prove to be unsuccessful.

 

[frpp]

Hello all,

I believe some of you have read through posts here and on other boards. I used to have the handle "JoeM", and posted a lot with Lib. This was in the early 2000's and spent four long years suffering immensely from TTTS and stapedial myoclonus, in both ears. Mainly in the left. I had the surgeries to cut both tendons, in both ears and have never looked back. For almost 15 years the surgeries had appeared successful. No noise induced or any other type of spasm occurred. Then all of a sudden last August my left eardrum started spasming again, badly. Because the original doctor who had done the surgeries had retired I had to find a new doctor, which took a while and he did a special MRI to see if the tendon was still there. It had appeared to have regrown. We opted for the surgery and indeed it had regrown, and he cut it. Surgery seemed successful last December.

Fast forward to August of this year, and I'm now starting to hear a click while I speak. It doesn't always happen, but quite frequently. If I taper my voice and speak very softly and/or monotonously, it seems to reduce the frequency, but I'm going insane again.

I went back to my doctor who had done the surgery last year and this time he put me on Valium. It has calmed my nerves some, but done very little to stop the clicking I hear when I speak. I rarely will hear (and even may feel it), the click, without speaking. It regrew once, so it could regrow again. I'm honestly hoping it did regrow, because at least there is a cause and it can be fixed (again). However, I have my follow up appointment on Monday. He told me during my first appointment that if he did another surgery, he would this time drill a hole through my skull so he could get better access to the Tensor Tympani and cut it in two places, since going in through the eardrum allows only restricted access to the Tensor Tympani because it is behind the malleus. Obviously a much more invasive surgery.

I'm hoping he will perform the surgery and I'm hoping that it did regrow and he will be able to cut it in two places.

But I'm curious as to anyone else here who has had the surgery have discovered any of the tendons have regrown?

I'm also curious as if after the surgeries, if the problem has still persisted, what else have you done?

Thanks,

JoeM

Did you ever get facepain/pressure or migraines from the spasms, if so how were they post surgery?

 

[TheOriginalJoeM]

Did you ever get facepain/pressure or migraines from the spasms, if so how were they post surgery?

No pain in my face, nor migraines, neither before or after surgery. All surgeries up until this last one, I really had almost no side-effects. Literally. After the 4-6 weeks of healing, I would have never known I had surgery. But this last one left me with what I believe to be some hearing loss, but that remains to be seen. If I have what I now believe is ETD, the positive pressurization in the ear can be the cause of the hearing loss.

 

[vttbx]

I have been looking into balloonplasty or eustachian tube dilation.

Eustachian tube balloon dilation is has been proven effective in several peer-reviewed studies.

• 99.7% Dilation access rate.
• An improvement from 13.9% (control) to 51.8% normalization of the tympanogram (a measure of middle ear pressure).
• A greater improvement in the quality of life – based on ETD questionnaires.

https://www.spirehealthcare.com/treatments/ear-nose-and-throat/eustachian-tube-balloon-dilatation/
Approximately 1% of the population suffers with pressure symptoms in their ears. For some people this is only troublesome when flying, due to an inability to equalise the pressures within their middle ears as the flight descends. However, for others it can cause problems at other times, particularly after a cold or sinusitis, when it can be associated with hearing problems, ear popping, crackling or tinnitus.

These symptoms are thought to occur due to inflammation and narrowing of the Eustachian tube, which links the middle part of the ear with the back of the nose. Collectively these symptoms are termed "Eustachian tube dysfunction."

These symptoms are usually treated with over-the-counter steroid drops or sprays; however these can prove to be unsuccessful.

One of the risks of eustachian tube dilation is it causing a patulous eustachian tube. My PET was not caused by dilation but by hyperbaric oxygen therapy. The two main symptoms are autophony (hearing yourself talking in your ears/head) and aerophony (hearing yourself breathing in your ears/head). These two symptoms are debilitating. I'm lucky to not experience them as much as others. My main symptom was a crackling sound with every swallow. It was so bad that I had surgery to fix it about a month ago. Be careful with eustachian tube dilation.

 

[Nobody19]

I can't comment on surgery, but I have read about Tympanic patching: https://www.brai3n.com/en/treatment/vliesjes/

I don't know anyone who tried it, but the procedure is much less invasive than surgery.

 

[TheOriginalJoeM]

One of the risks of eustachian tube dilation is it causing a patulous eustachian tube. My PET was not caused by dilation but by hyperbaric oxygen therapy. The two main symptoms are autophony (hearing yourself talking in your ears/head) and aerophony (hearing yourself breathing in your ears/head). These two symptoms are debilitating. I'm lucky to not experience them as much as others. My main symptom was a crackling sound with every swallow. It was so bad that I had surgery to fix it about a month ago. Be careful with eustachian tube dilation.

Thanks for the cautions on this. When I do the valsalva maneuver I do get temporary patulous eustachian tube. It is unpleasant. But then within 3-15 seconds (typically, although a few times it has lasted for several minutes), it goes back to feeling clogged and pressurized.

To be clear, was the surgery you had the eustachian tube dilation? Or something else?

I can't comment on surgery, but I have read about Tympanic patching: https://www.brai3n.com/en/treatment/vliesjes/

I don't know anyone who tried it, but the procedure is much less invasive than surgery.

Thanks, this looks promising too. It is good to know that there are doctors out there who are looking at this more holistically and not just saying, well, too bad, we can't do anything...

 

[vttbx]

To be clear, was the surgery you had the eustachian tube dilation? Or something else?

I never had eustachian tube dilation, as it will make most patulous eustachian tube worse. I had stents inserted into my eustachian tubes which eliminated my crackling. It's only bee 4 weeks now so I still have some side effects but I'm much better. Are you in the United States?

 

[TheOriginalJoeM]

I never had eustachian tube dilation, as it will make most patulous eustachian tube worse. I had stents inserted into my eustachian tubes which eliminated my crackling. It's only bee 4 weeks now so I still have some side effects but I'm much better. Are you in the United States?

I am outside Chicago, so I'm near a lot of good hospitals, just need to travel into the city. I see the specialist Monday and I just made another appointment with my current ENT (who has done the last two surgeries for me) to do a myringotomy on Wednesday, should Monday's appt. turn up nothing worthwhile. I sincerely hope that I catch a break on Monday, get some leads, and have a few options on the table to try. But if not, I'm down to my last hope right now which is the tubes. If those don't work, I'll probably break.

I too get the crackling sounds when I swallow sometimes, but for me they are not so bad. But I'm sorry that you are having to suffer through what you are going through.

 

[ChristianEsco]

Just an update. I had the surgery about 10 days ago and he cut the tendon but I am hearing the same "clicks" I heard before the surgery. These are not the normal post-op pops I'm used to hearing that will go away.

I did fear this going into the surgery because this time around the noises (clicks) seemed different and I was not feeling the pull on the ear drum, but I elected for the surgery because 1) the tendon did regrow once, so it could regrow again and be causing the problem and 2) if it got cut and I still had the issue, I'd know now for certain it would be something else since he totally obliterated the TT. The noises too sounded different (clicking and knocking) before the surgery vs the snapping I had in the past. I believe I NOW have palatal myo and that the tensor tympani muscle and/or the tensor veli palatini are spasming and internally I'm hearing the click. This click lines up to all the other research I've done so it only makes sense that I'll never get relief.

Since the muscle cannot be cut or removed, I will be looking into a doctor who can inject botox into the upper palate or through my nose. I will also be looking into an NTI mouthguard which is supposed to stop the user from clenching his/her teeth and causing those muscles to tighten and finally relax. But this could take months or longer.

The strange thing is most of the clicks are heard only when I talk and is relatively quiet elsewise, except a few random ones here and there. Anyone else have similar issues?

I'm confused as to what symptoms your left with now after your surgeries. So do you now still have sound reactive spasms at all? Or it's just your own voice & internal muscle movements/sounds that trigger you? Also, is it ever more than clicks now? Do you get those big spasms where you can feel air pressure leaving/entering the ear on a delay after you speak?

Eustachian tube dysfunction sounds right, but like vttbx mentioned make sure you determine whether its patulous or not. Logically patulous tubes make the most sense. Seems like this condition is really just a complete structural dysfunction of the ears, with multivariate causes.

I have severe TTTS spasms especially to inside noises/movements , and severe tinnitus. Been living silently like a monk for 4 months and its only worsened somehow. Feels like my ears are rotting. Beginning the surgery referencing/consultation process December 4th. If I can get 15 years of relief like you did I'll take that in a heart beat. I also get that loud crack when swallowing like vttbx. And I've had some minor occasional autophony in my worse ear, so I'm sure I have a mild case of PET.

 

[TheOriginalJoeM]

I'm confused as to what symptoms your left with now after your surgeries. So do you now still have sound reactive spasms at all? Or it's just your own voice & internal muscle movements/sounds that trigger you? Also, is it ever more than clicks now? Do you get those big spasms where you can feel air pressure leaving/entering the ear on a delay after you speak?

Eustachian tube dysfunction sounds right, but like vttbx mentioned make sure you determine whether its patulous or not. Logically patulous tubes make the most sense. Seems like this condition is really just a complete structural dysfunction of the ears, with multivariate causes.

I have severe TTTS spasms especially to inside noises/movements , and severe tinnitus. Been living silently like a monk for 4 months and its only worsened somehow. Feels like my ears are rotting. Beginning the surgery referencing/consultation process December 4th. If I can get 15 years of relief like you did I'll take that in a heart beat. I also get that loud crack when swallowing like vttbx. And I've had some minor occasional autophony in my worse ear, so I'm sure I have a mild case of PET.

Yeah, sorry, with so many surgeries, it is confusing.

I had three surgeries in 2005. The first surgery was in my left ear. ENT went through the ear canal by lifting up the eardrum (not invasive), and cut the stapes tendon. Later in the year, after I recovered, he went back to cut the tensor tympani tendon, using the same procedure. We did one tendon at a time, because he wanted to be certain of positive results (there was 50% improvement in symptoms) and negative side-effects (there were none). Then in 2006 he did the same procedure to the right ear but this time we did both tendons at once. Same results. Full improvement and no side effects.

Now in 2019, I had symptoms in the left ear. It is likely that after the surgery in 2005 to cut the TT, it regrew immediately. There is really no way it would wait 15 years to regrow. So I likely had a TT that never caused problems for 15 years. Then stress reared it's ugly head and it likely acted up. So in 2019, he went back in through the left eardrum, and cut the TT (again).

Now in 2020, I had symptoms, although these seemed different, but given my history of spasms, and the incredible fact the TT regrew, it was likely the same problem. But this time, in order to be certain the TT would never regrow, he went in very invasively behind my ear, because going through the eardrum means that most of the TT is blocked by the malleus bone, and so cutting it in two places to ensure a gap between both ends would be difficult. Cutting behind the ear gives full access. He also used a laser to cut it, instead of a knife. It is after this surgery that I have a reduction in hearing of 30-50%.

I only had reactive spasms of the eardrum when I had my tendons intact. Those are gone, however not to totally confuse you, is that this time it is likely the etube's malfunction is causing positive pressurization in my middle ear and so the correction of the pressure is making the eardrum "pop" and I hear a click from the etube unsticking. This is triggered by the activation or exercising of my jaw while talking. I hear a click at the end of sentences. I also hear it when swallowing and moving my head in a particular way or while running / going down stairs.

 

[ChristianEsco]

Yeah, sorry, with so many surgeries, it is confusing.

I had three surgeries in 2005. The first surgery was in my left ear. ENT went through the ear canal by lifting up the eardrum (not invasive), and cut the stapes tendon. Later in the year, after I recovered, he went back to cut the tensor tympani tendon, using the same procedure. We did one tendon at a time, because he wanted to be certain of positive results (there was 50% improvement in symptoms) and negative side-effects (there were none). Then in 2006 he did the same procedure to the right ear but this time we did both tendons at once. Same results. Full improvement and no side effects.

Now in 2019, I had symptoms in the left ear. It is likely that after the surgery in 2005 to cut the TT, it regrew immediately. There is really no way it would wait 15 years to regrow. So I likely had a TT that never caused problems for 15 years. Then stress reared it's ugly head and it likely acted up. So in 2019, he went back in through the left eardrum, and cut the TT (again).

Now in 2020, I had symptoms, although these seemed different, but given my history of spasms, and the incredible fact the TT regrew, it was likely the same problem. But this time, in order to be certain the TT would never regrow, he went in very invasively behind my ear, because going through the eardrum means that most of the TT is blocked by the malleus bone, and so cutting it in two places to ensure a gap between both ends would be difficult. Cutting behind the ear gives full access. He also used a laser to cut it, instead of a knife. It is after this surgery that I have a reduction in hearing of 30-50%.

I only had reactive spasms of the eardrum when I had my tendons intact. Those are gone, however not to totally confuse you, is that this time it is likely the etube's malfunction is causing positive pressurization in my middle ear and so the correction of the pressure is making the eardrum "pop" and I hear a click from the etube unsticking. This is triggered by the activation or exercising of my jaw while talking. I hear a click at the end of sentences. I also hear it when swallowing and moving my head in a particular way or while running / going down stairs.

Okay that's very interesting. Do you find your current pop/click debilitating? Because I have the same effect, but to me, the click is just a minor version of a full on spasm/flutter. So when my symptoms are tame I may have just a small click/thump (to room level speech), but when aggravated I get full on flutter air rush sounds. I can also make those happen just by stretching in the morning, no noise necessary. If you believe either positive or negative pressure is a culprit, you could try having a tube placed in your eardrum. Minimal surgery to being with. Also one last question, did you have tinnitus pre/post surgery and did it change? Mine has been worsening for 4 months despite living like a monk, and I'm sure its due to a pressure issue or acid reflux entering the ear through PET. Either way, 15 years of relief sounds incredible. Glad you got to experience that.

 

[TheOriginalJoeM]

Okay that's very interesting. Do you find your current pop/click debilitating? Because I have the same effect, but to me, the click is just a minor version of a full on spasm/flutter. So when my symptoms are tame I may have just a small click/thump (to room level speech), but when aggravated I get full on flutter air rush sounds. I can also make those happen just by stretching in the morning, no noise necessary. If you believe either positive or negative pressure is a culprit, you could try having a tube placed in your eardrum. Minimal surgery to being with. Also one last question, did you have tinnitus pre/post surgery and did it change? Mine has been worsening for 4 months despite living like a monk, and I'm sure its due to a pressure issue or acid reflux entering the ear through PET. Either way, 15 years of relief sounds incredible. Glad you got to experience that.

Yes, debilitating. Absolutely no question.

This click is different from the spasms. When I went in this year, pre-surgery, I had a gut feeling something wasn't the same, and there was a possibility that the tendon wasn't the culprit. Yes, the TT did regrow, but it was not causing the clicks. The obvious reason is that it is now totally obliterated and I have the same clicks. But when I had the spasms (2005, then again in 2019), it was very much a distinct pulling back of the eardrum like a slingshot. Very physical sensation. And yes, it was caused by sound, movement, light, even what is called, the "double muscle effect" (this is where you tense one muscle, and another can be triggered).

This issue now has almost TWO separate manifestations. The first is a distinct CLICK. I get this when talking or moving my head. Comes directly in the middle ear. The other is the more familiar POP, like you would get going up in an airplane. I believe the click is the e-tube unsticking with motion of the jaw or stretching the muscles surrounding the e-tube, and then as a result the pops, which are more random, just seem to happen from continued buildup of pressure.

My theory. But hey, what do I know that an ENT doesn't. Oh wait...

But joking aside, I know exactly what you are living through. I lived it for four years, from 2001 to 2005. It was pure (fill in the blank). There is a list of ENTs that do this surgery, through a web link. I understand what you say when you are living like a monk. I truly do.

https://fauquierent.net/earspecialist.htm

 

[TheOriginalJoeM]

Mine has been worsening for 4 months despite living like a monk...

Let me guess. You are angry that there is "something" that feels like it is "inside" your head, and you cannot get it out. Nothing seems to make it better and it keeps getting worse. You are probably angry that such a seemingly small thing could cause such great distress. You wish people could understand that it is like a little Leprechaun inside your middle ear flicking you in the eardrum constantly... and you try and explain it and they go "I have tinnitus too".

That was me. (Although the one caveat at the beginning, when it started, was I did get some brief relief if I drank enough..., since alcohol does act like a muscle relaxer... but ultimately that stopped working...)

 

[vttbx]

I am outside Chicago, so I'm near a lot of good hospitals, just need to travel into the city. I see the specialist Monday and I just made another appointment with my current ENT (who has done the last two surgeries for me) to do a myringotomy on Wednesday, should Monday's appt. turn up nothing worthwhile. I sincerely hope that I catch a break on Monday, get some leads, and have a few options on the table to try. But if not, I'm down to my last hope right now which is the tubes. If those don't work, I'll probably break.

I too get the crackling sounds when I swallow sometimes, but for me they are not so bad. But I'm sorry that you are having to suffer through what you are going through.

Thanks. You seem to be in good hands. If you are looking for another specialist in ETD and especially PET, Dr. Dennis Poe in Boston is considered one of the top doctors in his field. I could not see him in person as his waiting list is long, and I've been dealing with the crackling for over a year. But he does have a network of ENTs that he refers people to located all over the US. I'm in CA, so they referred me to an ENT in TX for the surgery. I didn't want to risk flying post-surgery so TX was doable. I was worried about needing a myringotomy afterward, but I was able to pop my ears about a week after surgery. Good luck!

 

[TheOriginalJoeM]

Thanks. You seem to be in good hands. If you are looking for another specialist in ETD and especially PET, Dr. Dennis Poe in Boston is considered one of the top doctors in his field. I could not see him in person as his waiting list is long, and I've been dealing with the crackling for over a year. But he does have a network of ENTs that he refers people to located all over the US. I'm in CA, so they referred me to an ENT in TX for the surgery. I didn't want to risk flying post-surgery so TX was doable. I was worried about needing a myringotomy afterward, but I was able to pop my ears about a week after surgery. Good luck!

Thank you. I looked up Dr. Poe and started going through related links and came across this one on ETD: https://onlinelibrary.wiley.com/doi/full/10.1111/coa.12475
Great article on ETD, and not so over-the-top medical that lay people cannot understand.

Have you looked into or heard of inner-ear fistulas? When I was first searching for answers in early 2004, I found an ENT at Loyola who misdiagnosed my TTTS (myoclonus) as an inner ear fistula. He did surgery. It obviously wasn't the problem (although he told me he fixed it... even after I told him post-op nothing changed). But according to this article, PET could be caused by a cochlear fistula.