Pulsatile Tinnitus Gone After Tenotomy of Middle Ear Muscles

[Padraigh Griffin]

Hi,

I am going to keep it brief. Last weekend I had my Stapedius and Tensor Tympani lasered by a very experienced and talented surgeon. Upon waking from anaesthesia I said straight away that my left side (operated ear) Pulsatile Tinnitus was gone. I had pulsing since July, 2020.

Just a little note for anyone who thinks they might have other symptoms of Middle Ear Myoclonus.

I won't be around to answer questions as early days in recovery and still have lots of tinnitus.

Interestingly enough my ability to somatically modulate my tinnitus is also not present anymore on my operated side.

There is hope. I had to fight hard to get this diagnosis, despite many inept doctors.

Will be back in a few weeks to update.

 

[NYCGuy]

Never heard of this but good luck and fast recovery's buddy!

 

[shasta0863]

Hi,

I am going to keep it brief. Last weekend I had my Stapedius and Tensor Tympani lasered by a very experienced and talented surgeon. Upon waking from anaesthesia I said straight away that my left side (operated ear) Pulsatile Tinnitus was gone. I had pulsing since July, 2020.

Just a little note for anyone who thinks they might have other symptoms of Middle Ear Myoclonus.

I won't be around to answer questions as early days in recovery and still have lots of tinnitus.

Interestingly enough my ability to somatically modulate my tinnitus is also not present anymore on my operated side.

There is hope. I had to fight hard to get this diagnosis, despite many inept doctors.

Will be back in a few weeks to update.

When you're back, please let us know who you went to. I am currently suffering beyond belief, my noise-induced tinnitus is nothing compared to this hell of a deep modulating vibrating hum that comes and goes if I'm lucky, or just sits there and oscillates (and I feel the muscle twitching) continuously without end.

I've read there are some surgeries, though I heard it requires drilling behind the war, but I'm terrified it will make my regular tinnitus worse, or the vibration worse, or not help at all. But I am getting desperate.

I've had this condition since 2019, brought on by heavy crying and stress of a loved one passing. I thought that getting a break 80-90% of the day, which I had for awhile, was something I could live with. But over the last month it's come back almost all the time. I'm desperate.

 

[Padraigh Griffin]

When you're back, please let us know who you went to. I am currently suffering beyond belief, my noise-induced tinnitus is nothing compared to this hell of a deep modulating vibrating hum that comes and goes if I'm lucky, or just sits there and oscillates (and I feel the muscle twitching) continuously without end.

I've read there are some surgeries, though I heard it requires drilling behind the war, but I'm terrified it will make my regular tinnitus worse, or the vibration worse, or not help at all. But I am getting desperate.

I've had this condition since 2019, brought on by heavy crying and stress of a loved one passing. I thought that getting a break 80-90% of the day, which I had for awhile, was something I could live with. But over the last month it's come back almost all the time. I'm desperate.

Hi, I'm so sorry to hear about your loss and your troubles. It sound like your Tensor Tympani is spasming. This can be provoked by periods of extreme stress. Surgery is simple and low risk. It resolved my rumbling tinnitus on the operated side 100% but my other ear is crazy. Getting second operation done soon. Can I ask where do you live? I have knowledge of doctors that could help you worldwide.

 

[Lane]

I feel the muscle twitching) continuously without end.

Hi @shasta0863 -- So sorry to hear how difficult your situation is. You may want to check out the following thread I started which touches on some of the things you're dealing with. Take care!

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

 

[shasta0863]

Hi, I'm so sorry to hear about your loss and your troubles. It sound like your Tensor Tympani is spasming. This can be provoked by periods of extreme stress. Surgery is simple and low risk. It resolved my rumbling tinnitus on the operated side 100% but my other ear is crazy. Getting second operation done soon. Can I ask where do you live? I have knowledge of doctors that could help you worldwide.

Lately it's just doing it for no apparent reason. I can always trigger it badly by using earplugs (the original catalyst that set it off after an intense night of crying) or lying on the ear. The car low hum vibration from engine will trigger it (only hearing it after the car is off). Going outside even quiet, seems to trigger it for a time. Those are if I'm lucky and come in spurts with a calm down. When it's all the time, it just sticks no matter what, but always worse with plugging the ear, laying on it or other low frequency noises that aggravate it. I can stop it by talking, or shaking my head.

I'm in California, and I've wasted more money than I care to admit with idiots. It's been rough. Actual supposed RENOWN neuro-otologists in California who blew me off.

I'm willing to save up, sell, hard loan. whatever, to go to whoever has knowledge and a plan so I can live again. My 20s have been ruined with noise induced tinnitus, but this is breaking the proverbial camel's back for me.

 

[Padraigh Griffin]

https://providers.ucsd.edu/details/32904/ent-head-and-neck-(otolaryngology)-surgery

This is your man. Trust me. You are lucky he is accessible given your location.

 

[shasta0863]

https://providers.ucsd.edu/details/32904/ent-head-and-neck-(otolaryngology)-surgery

This is your man. Trust me. You are lucky he is accessible given your location.

Thank you very much. Can't believe he's in my own state. Now that I'm settled back and home I will be reaching out and hopefully this can spark some positivity for me. Tinnitus and hyperacusis was bad enough, this was an entirely different beast.

So glad I found your post and thank you from the bottom of my heart for responding with the information.

Are you doing well now after a good month+?

 

[Padraigh Griffin]

Thank you very much. Can't believe he's in my own state. Now that I'm settled back and home I will be reaching out and hopefully this can spark some positivity for me. Tinnitus and hyperacusis was bad enough, this was an entirely different beast.

So glad I found your post and thank you from the bottom of my heart for responding with the information.

Are you doing well now after a good month+?

Hey, it's taking time to recover, especially my second ear but long term will be worth it. My surgeon is excellent but still a level below Friedman, who is the best in the world at this procedure. Apparently it only takes 15-20 minutes of his time. He also completely suctions out the remaining pieces. I had my surgeries only 6 weeks apart which is a bit kamikaze but I was eager to get them done as it really is the only solution when things get bad.

I hope you get some satisfaction from him, and am so happy he is accessible to you. A consultation will give you a good idea.

Glad I could help.

 

[Rafaa]

Wow congrats on solving at least one of your ear issues. This is probably a hugely overlooked cause. I even asked the leading UK ENT for pulsatile tinnitus if this was the cause and he went silent. Worrying!

I have the same, if I have a bad night's sleep with lots of dreams and increased heart rate, I get awoken by thumping and if it's a really bad sleep I wake up with thumping, full ears, autophony, instability.

I always used to think it is fluid in the middle ear but I'm 95% sure it's my nerves firing off the MEM due to the internal sounds of my pulse.

My ear rumbles when scratching the back of the head. Sometimes sounds that I KNOW are not too loud, the ear just rumbles away. It's obviously an overractive middle ear muscles probably caused by trauma and has messed up the trigeminal nerve.

Thing is my ear vibrates sometimes from my voice. And if I put a vibrating electric shaver to the right side of my neck, the ear vibrates too. I have yet to find someone with that. I believe that is also sensitivity in the middle ear muscles. But I have asked leading ENTs in the UK and they have a blank stare in their face. May need to go abroad for answers.

 

[Padraigh Griffin]

Wow congrats on solving at least one of your ear issues. This is probably a hugely overlooked cause. I even asked the leading UK ENT for pulsatile tinnitus if this was the cause and he went silent. Worrying!

I have the same, if I have a bad night's sleep with lots of dreams and increased heart rate, I get awoken by thumping and if it's a really bad sleep I wake up with thumping, full ears, autophony, instability.

I always used to think it is fluid in the middle ear but I'm 95% sure it's my nerves firing off the MEM due to the internal sounds of my pulse.

My ear rumbles when scratching the back of the head. Sometimes sounds that I KNOW are not too loud, the ear just rumbles away. It's obviously an overractive middle ear muscles probably caused by trauma and has messed up the trigeminal nerve.

Thing is my ear vibrates sometimes from my voice. And if I put a vibrating electric shaver to the right side of my neck, the ear vibrates too. I have yet to find someone with that. I believe that is also sensitivity in the middle ear muscles. But I have asked leading ENTs in the UK and they have a blank stare in their face. May need to go abroad for answers.

Hwy, you don't need to go abroad. Just go to this guy.

https://www.topdoctors.co.uk/doctor/manohar-bance

ENTs are too general. You need a neurotologist.

Best of luck, he is a very nice man too.

 

[Brian Newman]

Hi,

I am going to keep it brief. Last weekend I had my Stapedius and Tensor Tympani lasered by a very experienced and talented surgeon. Upon waking from anaesthesia I said straight away that my left side (operated ear) Pulsatile Tinnitus was gone. I had pulsing since July, 2020.

Just a little note for anyone who thinks they might have other symptoms of Middle Ear Myoclonus.

I won't be around to answer questions as early days in recovery and still have lots of tinnitus.

Interestingly enough my ability to somatically modulate my tinnitus is also not present anymore on my operated side.

There is hope. I had to fight hard to get this diagnosis, despite many inept doctors.

Will be back in a few weeks to update.

So you had both your stapedius and tensor tympani lasered. I suspect part of my pain is from one of those two muscles. Did you have any other symptoms like pain from swallowing, your voice sounding extremely loud and causing aching, fluttering to noise, hearing a twang or rumbling when yawning?

 

[Padraigh Griffin]

So you had both your stapedius and tensor tympani lasered. I suspect part of my pain is from one of those two muscles. Did you have any other symptoms like pain from swallowing, your voice sounding extremely loud and causing aching, fluttering to noise, hearing a twang or rumbling when yawning?

Yes I had the two muscles severed. There is another nerve that is routinely 'cut' called the Jacobsen Nerve that is more responsible for pain. Your symptoms sound very much like MEM. It is different for everyone, but rumbling is very indicative of Tensor Tympani spasming. Mine was induced by blinking and closing eyes.

 

[JFred]

@Padraigh Griffin, I have fluttering, vibrating, bass-like noise in my right ear. It came a week ago out of nowhere right after a sinusitis. It was gone for about half a day Wednesday, then came back before disappearing for another day and half. Then came back and has been there ever since. Only thing making it temporary disappear is slowly blowing air into my Eustachian tubes, but not so that it pops or exits the ears. But it always comes back and gives diminishing returns after a while.

Feels like my ears spasm. I'd really love to hear back from you regarding this surgery as I can't sleep or eat or work due to extreme anxiety. I am truly losing my mind.

 

[GoatSheep]

Hi,

I am going to keep it brief. Last weekend I had my Stapedius and Tensor Tympani lasered by a very experienced and talented surgeon. Upon waking from anaesthesia I said straight away that my left side (operated ear) Pulsatile Tinnitus was gone. I had pulsing since July, 2020.

Just a little note for anyone who thinks they might have other symptoms of Middle Ear Myoclonus.

I won't be around to answer questions as early days in recovery and still have lots of tinnitus.

Interestingly enough my ability to somatically modulate my tinnitus is also not present anymore on my operated side.

There is hope. I had to fight hard to get this diagnosis, despite many inept doctors.

Will be back in a few weeks to update.

How are things now? I recall you posting another thread on the tinnitus support forum after this surgery about an issue with hearing things going on in one ear in the other ear or something.

Do you feel these issues are related to the surgery? Have you experienced any other issues?

 

[Padraigh Griffin]

How are things now? I recall you posting another thread on the tinnitus support forum after this surgery about an issue with hearing things going on in one ear in the other ear or something.

Do you feel these issues are related to the surgery? Have you experienced any other issues?

Hi, things are so much better than they were pre operations. Some issues but honestly no point commenting until 6-12 months post op. Time will tell!

 

[GoatSheep]

Hi, things are so much better than they were pre operations. Some issues but honestly no point commenting until 6-12 months post op. Time will tell!

Please keep us posted on things after that time period.

 

[Padraigh Griffin]

Please keep us posted on things after that time period.

Will do.

 

[GoatSheep]

Hi,

I am going to keep it brief. Last weekend I had my Stapedius and Tensor Tympani lasered by a very experienced and talented surgeon. Upon waking from anaesthesia I said straight away that my left side (operated ear) Pulsatile Tinnitus was gone. I had pulsing since July, 2020.

Just a little note for anyone who thinks they might have other symptoms of Middle Ear Myoclonus.

I won't be around to answer questions as early days in recovery and still have lots of tinnitus.

Interestingly enough my ability to somatically modulate my tinnitus is also not present anymore on my operated side.

There is hope. I had to fight hard to get this diagnosis, despite many inept doctors.

Will be back in a few weeks to update.

I was asking you about MEM in a Research News thread, but didn't want to tie up that thread so wanted to follow up with you here.

You say your MEM was a buzzing sound. You also mentioned a loud hiss. Are you saying that having both your ears operated on eliminated both of these tinnitus "tones" for you?

Many of the cases of these types of tinnitus are objective. Were either of yours objective?

 

[Padraigh Griffin]

I was asking you about MEM in a Research News thread, but didn't want to tie up that thread so wanted to follow up with you here.

You say your MEM was a buzzing sound. You also mentioned a loud hiss. Are you saying that having both your ears operated on eliminated both of these tinnitus "tones" for you?

Many of the cases of these types of tinnitus are objective. Were either of yours objective?

Yes, my tinnitus was objective. I had an in-ear microphone detect the change in noise when I closed my eyes. It is a subset of MEM called forced eyelid closure syndrome. It is too early to give you a proper update on my tinnitus sounds. All I can say at this point is that the pulsatile tinnitus resolved, the rumbling resolved on left side (op 27th Nov) and somatic tinnitus declined massively on left side mainly. The second ear, right side, is still too early post-op for any report, but has improved.

I will update in 6-12 months. This is what most people who have had the operation state as the full recovery window.

 

[GoatSheep]

Yes, my tinnitus was objective. I had an in-ear microphone detect the change in noise when I closed my eyes. It is a subset of MEM called forced eyelid closure syndrome. It is too early to give you a proper update on my tinnitus sounds. All I can say at this point is that the pulsatile tinnitus resolved, the rumbling resolved on left side (op 27th Nov) and somatic tinnitus declined massively on left side mainly. The second ear, right side, is still too early post-op for any report, but has improved.

I will update in 6-12 months. This is what most people who have had the operation state as the full recovery window.

Is there a name for the procedure for the in-ear microphone? You mentioned getting a long-term Tympanometry test, but several threads on the board report people having issues with that test. I have noxacusis so any tests that may cause some people issues I try to steer clear of them. Would this microphone test be an alternative to the Tympanometry?

 

[Padraigh Griffin]

Is there a name for the procedure for the in-ear microphone? You mentioned getting a long-term Tympanometry test, but several threads on the board report people having issues with that test. I have noxacusis so any tests that may cause some people issues I try to steer clear of them. Would this microphone test be an alternative to the Tympanometry?

Hi, the official name for the test is 'Bio-Logic Otoacoustic Emissions Report'. At least that is what it is called in Ireland. I had to pester the public system here to do the test.

Objective tinnitus can be detected by audiologists/ENTs far more often than it currently is if they took an interest and did the proper tests. I had to tell them that they could detect the noise if they used an in ear microphone. They scoffed, but I was proved right. Well done me

 

[Benjaminbb]

Hi, things are so much better than they were pre operations. Some issues but honestly no point commenting until 6-12 months post op. Time will tell!

Hey wow, it's sooo amazing it actually stopped after surgery. I've seen a few people get the snip to no avail regarding low hum, which is leading me to believe there are at least two types. Would love to know more about the low hum/rumble you had to see if we align.

You seem pretty certain yours was the Tensor Tympani/Stapedius, and given the correction from surgery I'd have to agree. So I'm assuming you had the exact same type of rumble you get from yawning and those muscles kind of fluttering/roaring? Some people can also create this sound from closing eyes hard like you mentioned.

A few of us on here have a very unique type of low hum and I'm trying to work out if there's any chance it was the same as yours or something different. I can make those muscles flutter whilst my hum being completely unfazed, as well of it being a different sound altogether which makes me think it may be different to you. Most MEM is also characterised by clicking of the Tensor Tympani, which we "hummers" generally definitely don't have. Let me know if you had any of these symptoms or you think this is something else:

• The hum is intermittent
• The hum can appear as a strait subwoofer type tone (80 Hz or so), a flicking distant hum/rumble
• It can sometimes amplify quiet/distant bassy sounds.
• It can cause sensitivity/hyperacusis
• It can be stopped with the shake of the head or sound before quickly fading back in
• When it's off, sounds can also trigger it to turn on
• Long inhibition, i.e. a long flight, car ride, going to a bar for hours can then inhibit the hum for days for many of us

 

[Padraigh Griffin]

Hey wow, it's sooo amazing it actually stopped after surgery. I've seen a few people get the snip to no avail regarding low hum, which is leading me to believe there are at least two types. Would love to know more about the low hum/rumble you had to see if we align.

You seem pretty certain yours was the Tensor Tympani/Stapedius, and given the correction from surgery I'd have to agree. So I'm assuming you had the exact same type of rumble you get from yawning and those muscles kind of fluttering/roaring? Some people can also create this sound from closing eyes hard like you mentioned.

A few of us on here have a very unique type of low hum and I'm trying to work out if there's any chance it was the same as yours or something different. I can make those muscles flutter whilst my hum being completely unfazed, as well of it being a different sound altogether which makes me think it may be different to you. Most MEM is also characterised by clicking of the Tensor Tympani, which we "hummers" generally definitely don't have. Let me know if you had any of these symptoms or you think this is something else:

• The hum is intermittent
• The hum can appear as a strait subwoofer type tone (80 Hz or so), a flicking distant hum/rumble
• It can sometimes amplify quiet/distant bassy sounds.
• It can cause sensitivity/hyperacusis
• It can be stopped with the shake of the head or sound before quickly fading back in
• When it's off, sounds can also trigger it to turn on
• Long inhibition, i.e. a long flight, car ride, going to a bar for hours can then inhibit the hum for days for many of us

Hi, I too have had the hum since the Pfizer shot which exacerbated my MEM. It appeared in the weeks after and progressed to a rumble. I still have it noticeably on waking in the morning, but feel it is declining. It will disappear throughout the day. I do believe myself it is the Tensor Tympani in spasm. The hum would always disappear and be replaced by a loud thunder noise when I tensed my spasming Tensor Tympani.

Even though I have had tenotomies, the muscles will continue to spasm, but will not cause the havoc like before as the tendon to the ossicles is cut and I don't get the problems that I had before. What is interesting is that a few others have developed the hum post operation. Notably two that I am in contact with. One is finding it distressing and quizzed the surgeon. The Professor who performed the surgery is a top dog and he did not have an answer. He says the ear makes a wide variety of sounds in the months post operation... sometimes years even.

Unfortunately when it comes to the ear, there are still many mysteries.

Yes, most MEM is thumping but there are quite a few hummers, rumblers and buzzers in there too from my experience.

Personally if you ask my opinion (no medical training), I feel the hum is a chronic spasm of the Tensor Tympani, which from my research can spasm at the speed of light. I firmly believe the spasm is caused by innervation and in particular the Trigeminal Nerve to which it is connected by a mandibular division. All goes back to motor neurons, and hyperexcitability. I believe hyperexcitability plays a huge role in tinnitus in general.

Hope this helps + does not confuse you more

 

[Benjaminbb]

Hi, I too have had the hum since the Pfizer shot which exacerbated my MEM. It appeared in the weeks after and progressed to a rumble. I still have it noticeably on waking in the morning, but feel it is declining. It will disappear throughout the day. I do believe myself it is the Tensor Tympani in spasm. The hum would always disappear and be replaced by a loud thunder noise when I tensed my spasming Tensor Tympani.

Even though I have had tenotomies, the muscles will continue to spasm, but will not cause the havoc like before as the tendon to the ossicles is cut and I don't get the problems that I had before. What is interesting is that a few others have developed the hum post operation. Notably two that I am in contact with. One is finding it distressing and quizzed the surgeon. The Professor who performed the surgery is a top dog and he did not have an answer. He says the ear makes a wide variety of sounds in the months post operation... sometimes years even.

Unfortunately when it comes to the ear, there are still many mysteries.

Yes, most MEM is thumping but there are quite a few hummers, rumblers and buzzers in there too from my experience .

Personally if you ask my opinion (no medical training), I feel the hum is a chronic spasm of the Tensor Tympani, which from my research can spasm at the speed of light. I firmly believe the spasm is caused by innervation and in particular the Trigeminal Nerve to which it is connected by a mandibular division. All goes back to motor neurons, and hyperexcitability. I believe hyperexcitability plays a huge role in tinnitus in general.

Hope this helps + does not confuse you more

Good to know you've heard about some hummers with MEM. The chronic spasm is definitely one theory. In many ways i hope this is what it is because it means I wouldn't have to worry about sound as much (worried it was caused by damage and damaging it further).

I've managed to protect my ears fairly well over the years, but earplugs don't protect you from sub bass near as much, which is why I believe it could be related. Along with many people who have it having a higher frequency tinnitus as well (correlation with damage).

What confuses me though is how many people get the snip and still have it like you. Many think it's resolved for a second and then realise it's not, I think more likely it was temporarily inhibited which can happen quite easy with the hum. This is what has led me to believe that it isn't the cause. As much as it sounds and feels like a physical vibration, so would any perception of a low frequency sound whether heard in the brain or physically. If it was physical, then a sensitive mic placed near our ear be able to hear the hum/vibration, right?

Considering this has continued for you, what were the key problems were resolved from the surgery? Out of interest, can you still make the Tensor Tympani rumble by flexing?

As less appealing as it is, I also have a theory that it is caused by outer hair cell damage. The outer hair cells mechanically amplify low-level sound that enters the cochlea, and needed with louder sounds. You can damage up to 80% of outer hair cells before it shows up on a hearing test.

Which could explain why it:
1. Fades in during silence & low level noise.
2. Amplifies low level bass sounds/reactive (e.g., some people hear a distant car driving past at an exaggerated volume in the effected ear).
3. Is easily inhibited by any low frequency sound once the hairs are being moved by physical sound.

It is possible muscle spasm could react the same way, but seems less likely to me for the reasons i explained. I'd also assume it would spasm due to overactivity regardless of input nor would it amplify low level bass.

 

[Rafaa]

Hwy, you don't need to go abroad. Just go to this guy.

https://www.topdoctors.co.uk/doctor/manohar-bance

ENTs are too general. You need a neurotologist.

Best of luck, he is a very nice man too.

Hi,

Just wanted to say how revolutionary your work is. People never mention the middle ear as a cause of pulsatile tinnitus despite researching this for years in the past.

Interesting that you recommended him as I was referred to Addenbrookes Cambridge. I looked at him in the eye while in the waiting room but unfortunately the two specialists I saw met with a blank stare when I mentioned the middle ear. One of them supposedly the best pulsatile tinnitus doctor in the UK...

Which other symptoms of yours were resolved. Ear fullness?

Whenever I get a bit of head pressure or anxiety, it triggers the pulsatile tinnitus and ear fullness. I also have somatic activation of the middle ear muscles. So a drone sound when I move my head, sometimes my voice resonates when I speak. That's worse than tinnitus for me.

I'm not sure whether to wait it out for some breakthrough in medicine to reverse this or just go along with the surgery.

 

[Padraigh Griffin]

Hi,

Just wanted to say how revolutionary your work is. People never mention the middle ear as a cause of pulsatile tinnitus despite researching this for years in the past.

Interesting that you recommended him as I was referred to Addenbrookes Cambridge. I looked at him in the eye while in the waiting room but unfortunately the two specialists I saw met with a blank stare when I mentioned the middle ear. One of them supposedly the best pulsatile tinnitus doctor in the UK...

Which other symptoms of yours were resolved. Ear fullness?

Whenever I get a bit of head pressure or anxiety, it triggers the pulsatile tinnitus and ear fullness. I also have somatic activation of the middle ear muscles. So a drone sound when I move my head, sometimes my voice resonates when I speak. That's worse than tinnitus for me.

I'm not sure whether to wait it out for some breakthrough in medicine to reverse this or just go along with the surgery.

It is not particularly revolutionary. There are doctors performing this routinely in the US. Notably Rick Freidman on West Coast who is seen as the world's best and Dr. Santos in Boston. Friedman has performed over 200 of these procedures and apparently it is 20 minutes of work for him. Dr. Santos has performed over 50 surgeries to my and others knowledge.

I would suggest two things:

1.) Firstly go to as good an audiologist as you can find and get your middle ear tympanogram done when not activating your middle ear muscles and ask for the same test to be repeated when you are activating the muscles. If there is a noticeable drop in middle ear pressure (your peak) then you could be considered to have myoclonus of the middle ear. Also ask for a long time based tympanometry. The audiologist will be confused as it is an unknown test but important for the Professor. Here are his instructions on how to do it:

I have also included his private secretary email on there. He does the operation privately at Spire Cambridge Lea. I am not sure what your insurance situation is but the cost was approximately €6,400 of which €700 is the Professor's fee.

2.) If the results from your audiologist (try and seek out the best in Britain if you can!) suggest middle ear myoclonus, then I would highly recommend Prof. Manohar Bance and a private consultation can be arranged here:

Private Consultation: Prof. Manohar Bance

Note: I was 100% sure my pulsatile or should we call 'rhythmic tinnitus' was caused by my MEM but the Professor had never seen it resolve. He probably never had a 'rhythmic' patient before as most MEM are thumpers.

When I first got pulsatile tinnitus I used this document as my reference and made sure I had every test done as per the possible causes on this.

Information: Pulsatile Tinnitus

It finally turned out to be MEM and when I woke up from my surgery it was resolved 100% and it had been constant and loud for 18 months. Not a hint of it since 5 months later thankfully but I do still have spasms related to MEM as my condition was quite bad. Not intermittent but constant and is a subset of MEM called 'Forced Eyelid Closure Syndrome' which has only 200 documented cases in history.

I've read a lot on MEM and I believe it could be a strong possibility in your case.

Interestingly I had abnormal negative pressure on my middle ear tympanograms indicating ETD prior to surgery. Post surgery my middle ear pressure readings are normal.

Sincerely hope this helps. Any more questions? I can help.

 

[Padraigh Griffin]

Good to know you've heard about some hummers with MEM. The chronic spasm is definitely one theory. In many ways i hope this is what it is because it means I wouldn't have to worry about sound as much (worried it was caused by damage and damaging it further).

I've managed to protect my ears fairly well over the years, but earplugs don't protect you from sub bass near as much, which is why I believe it could be related. Along with many people who have it having a higher frequency tinnitus as well (correlation with damage).

What confuses me though is how many people get the snip and still have it like you. Many think it's resolved for a second and then realise it's not, I think more likely it was temporarily inhibited which can happen quite easy with the hum. This is what has led me to believe that it isn't the cause. As much as it sounds and feels like a physical vibration, so would any perception of a low frequency sound whether heard in the brain or physically. If it was physical, then a sensitive mic placed near our ear be able to hear the hum/vibration, right?

Considering this has continued for you, what were the key problems were resolved from the surgery? Out of interest, can you still make the Tensor Tympani rumble by flexing?

As less appealing as it is, I also have a theory that it is caused by outer hair cell damage. The outer hair cells mechanically amplify low-level sound that enters the cochlea, and needed with louder sounds. You can damage up to 80% of outer hair cells before it shows up on a hearing test.

Which could explain why it:
1. Fades in during silence & low level noise.
2. Amplifies low level bass sounds/reactive (e.g., some people hear a distant car driving past at an exaggerated volume in the effected ear).
3. Is easily inhibited by any low frequency sound once the hairs are being moved by physical sound.

It is possible muscle spasm could react the same way, but seems less likely to me for the reasons i explained. I'd also assume it would spasm due to overactivity regardless of input nor would it amplify low level bass.

To answer your question, I can still tense my Tensor Tympani on the right side to induce a very low rumble, but I have a chronic spasm still in there. It is the muscle still in spasm and it is being picked up on Tympanometry. It can still cause very distressing tinnitus. Here are the tympanograms:

Long time based tympanogram with eyes open.

Test repeated with eyes closed:

There is an increase in the spasm with eyes closed.

We are adopting a 'wait and see approach'. Here are the Professor's comments:

However, I do see that odd ripple in the baseline of the right reflex decay tracing. Is that about the frequency of your rumble (you can see the timebase on trace to work out frequency)? This maybe some kind of muscle spasm being picked up by microphone in ear canal, if it's not an artefact.

Hope this all helps.

 

[Benjaminbb]

To answer your question, I can still tense my Tensor Tympani on the right side to induce a very low rumble, but I have a chronic spasm still in there. It is the muscle still in spasm and it is being picked up on Tympanometry. It can still cause very distressing tinnitus. Here are the tympanograms:

Long time based tympanogram with eyes open.

View attachment 49715

Test repeated with eyes closed:

View attachment 49716

There is an increase in the spasm with eyes closed.

We are adopting a 'wait and see approach'. Here are the Professor's comments:

However, I do see that odd ripple in the baseline of the right reflex decay tracing. Is that about the frequency of your rumble (you can see the timebase on trace to work out frequency)? This maybe some kind of muscle spasm being picked up by microphone in ear canal, if it's not an artefact.

Hope this all helps.

Interesting. Appreciate this!

So if I understand correctly, the loud thumping and fullness stopped for you but the hum is still continuing? Which you believe is part of the muscle that is still attached? I was under the impression there was no muscle left at all due to the suction removal.

Appreciate you answering these questions! It sounds like you had many symptoms, some resolved and some not, so I'm just trying to wrap my head around it.

When you say rumble, are you referring to this:



A similar-ish sound can be caused by tensing your fist and covering your ear with it.

But regarding the tympanogram, I am most interested in the HUM aspect. We know that tensing Tensor Tympani creates a rumble that could be heard outside (many people can recreate that by yawing, closing eyes tight etc). So when the rumble is induced, the ability to pick it up on Tympanogram should be the same in any regular non MEM patient, right?

I'd be interested to know if the same reading on the tympanogram occurs when the oscillating hum is going by itself. Because that would then suggest the hum is audible and also possibly related to the muscle, not just the 'tensing rumble.'

As I mentioned in my other post: from my experience the intermittent hum I hear and tensing 'Tensor Tympani rumble' are two different things. I can control the muscular rumble but the hum/buzzing does its own thing. Again, it's hard to know exactly what you're hearing so just trying to figure this out if we're even having the same symptoms.

 

[Padraigh Griffin]

Interesting. Appreciate this!

So if I understand correctly, the loud thumping and fullness stopped for you but the hum is still continuing? Which you believe is part of the muscle that is still attached? I was under the impression there was no muscle left at all due to the suction removal.

Appreciate you answering these questions! It sounds like you had many symptoms, some resolved and some not, so I'm just trying to wrap my head around it.

When you say rumble, are you referring to this:

A similar-ish sound can be caused by tensing your fist and covering your ear with it.

But regarding the tympanogram, I am most interested in the HUM aspect. We know that tensing Tensor Tympani creates a rumble that could be heard outside (many people can recreate that by yawing, closing eyes tight etc). So when the rumble is induced, the ability to pick it up on Tympanogram should be the same in any regular non MEM patient, right?

I'd be interested to know if the same reading on the tympanogram occurs when the oscillating hum is going by itself. Because that would then suggest the hum is audible and also possibly related to the muscle, not just the 'tensing rumble.'

As I mentioned in my other post: from my experience the intermittent hum I hear and tensing 'Tensor Tympani rumble' are two different things. I can control the muscular rumble but the hum/buzzing does its own thing. Again, it's hard to know exactly what you're hearing so just trying to figure this out if we're even having the same symptoms.

I was never a thumper. My symptoms were more buzzing and rumbling. Both could make my entire head buzz or rumble. I had a constantly contracting Tensor Tympani that was presumably creating these sounds though some could be attributed to my Stapedius. Certainly I believe that my 'pulsatile' or more correctly rhythmic tinnitus was from my Stapedius. The sounds I hear are exactly like the rumble from yawning or more like wind blowing in your ears when you are outside. Prior to surgery this could happen anytime especially with eye closure (trying to sleep, etc). It was a nightmare. After surgery the involuntary nature of this has disappears and I can only induce it now on the right hand side by tensing my remaining Tensor Tympani.

Note regarding the Tensor Tympani resection, the entire Tensor Tympani is not suctioned out as it is a large muscle in a bony canal that remains attached on the other end. Not the malleus end. If you look at the Tensor Tympani, it is only the thin end (the actual tendon) that is resected and surgeons use either a laser or sickle knife to cut right through it. It is very hard to access it and in my case drilling was needed to get at it. The surgeon in my case used a sickle knife and then cauterised the ends with a laser (he used laser to cut the stapedius). The approach in the US with Friedman's method uses a laser to cut both tendons and they also suction out the area, I presume to get rid of any bits left overs (or artefacts). The large Korean study on MEM uses the sickle knife approach but I feel Friedman's method is more evolved. Either way you are left with the Tensor Tympani still in place but not connected to the malleus. In my case we feel that the Tensor Tympani is still carrying a spasm on my right side.

As regards your question regarding the tympanogram reading, the tympanograms were done for both right and left and the ripple was only seen on the right side so it is not normal as when I induce the rumbling it isn't picked up on the left side so that would discount it being normal. Also the Professor's comments indicates it isn't normal. It is certainly an indication of a remaining spasm or an artefact.

It is very difficult for me to know how much of the tinnitus I still experience is as a result of this spasm, and how much is probably related to hearing loss as I am down 60 dB at 8,000 Hz. A complicated situation alright

Time will tell really. My left ear's maintained the ability to rumble for approx 10 weeks post operation, but now I can't even make it no matter how hard I try. It is about 12 weeks post op on the right ear so early days. Some people have not had a clearer picture for 12 months+ after surgery.

I am a very rare case as no one I know had surgeries six weeks apart. Most wait a lot longer, with surgeons recommending a minimum of three months. Recovery isn't easy as the packing makes the tinnitus crazy for 3-4 weeks.

Taking that into account I presume my picture won't be clearer for many months yet. We are repeating the tympanograms in two months time.