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andreguedes

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Reply with quote  #1 
Hi everyone!

A couple of months ago, my left ear started to make a "thump" sound in the end of sentences when I'm talking. Sounds like a spasm - it's very annoying. I have ear fullness too and mild intolerance to some kind of sounds.

I saw three ENTs and they said the problem is Eustachian Tube congestion due to alergies, but after two months, the treatment didn't work. The spasm is always here. When I told about the spasm AFTER saying sentences, the doctors looked at me like I was crazy.

Reaearching the internet, I discovered the TTTS syndrom (Timpanic Tensor Syndrom) and ALL the symptoms fits! I believe I'm suffering from this condition.

Anyone in this same annoying situation?

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AnthonyO

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Reply with quote  #2 
It may very well be "Tonic Tensor Tympanic Syndrome", but as in ANY illness, condition or malady, it's best to bring this to the attention of a better equip medical physician that has both the tools, knowledge and experience to diagnosis the patient, through a full battery of specialized testing. A Board Certified Doctor of Audiology, Neuro-Otologist or Oto-Neurologist, would be in proper order.

An E.N.T. (aka, an Otorhinolaryngologist) are excellent medical professionals who are rather good at diagnosing & fighting infections that are connected between the "Ear, "Nose" & "Throat" (duh!), but when it comes to more VERY intricate infirmities and dysfunctions in the middle ear space, inner ear and auditory nerve that connects such ossicles to the brain via the 7th & 8th cranial nerves (aka as, The Good 'ol Auditory Nerve), to put it bluntly, E.N.T.s have a big and clumsy tract record in "rolling-that-dice" in that area.

Recap: Find a Board Certified Doctor of Audiology, Neuro-Otologist or Oto-Neurologist.

(Yer ears...AND BRAIN!...will luv ya better...!)

AnthonyO
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andreguedes

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Reply with quote  #3 
Quote:
Originally Posted by AnthonyO
It may very well be "Tonic Tensor Tympanic Syndrome", but as in ANY illness, condition or malady, it's best to bring this to the attention of a better equip medical physician that has both the tools, knowledge and experience to diagnosis the patient, through a full battery of specialized testing. A Board Certified Doctor of Audiology, Neuro-Otologist or Oto-Neurologist, would be in proper order.

An E.N.T. (aka, an Otorhinolaryngologist) are excellent medical professionals who are rather good at diagnosing & fighting infections that are connected between the "Ear, "Nose" & "Throat" (duh!), but when it comes to more VERY intricate infirmities and dysfunctions in the middle ear space, inner ear and auditory nerve that connects such ossicles to the brain via the 7th & 8th cranial nerves (aka as, The Good 'ol Auditory Nerve), to put it bluntly, E.N.T.s have a big and clumsy tract record in "rolling-that-dice" in that area.

Recap: Find a Board Certified Doctor of Audiology, Neuro-Otologist or Oto-Neurologist.

(Yer ears...AND BRAIN!...will luv ya better...!)

AnthonyO



Thank you, AnthonyO. I'll look for a good Oto-neurologist here in Rio de Janeiro, Brazil.

The third ENT said my problem is a "muscle spasm" in the middle ear and I have to deal with it, but he didn't mention TTTS and didn't recognize "ear fulness" as a TTTS symptom (although, I know it is). Also, he didn't talk about seeing another specialists.

Thanks for your advice.



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HobbesTiger

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Reply with quote  #4 
Yes yes and yes. I had TTS and stspedial myoclonus. 99.9% of. ENTs have never heard of it and can't helpyou at best and think you're crazy st worst. Find one who will listen to you and the evidence there is. After years of searching and HELL I found one who did and he cut bith ear's tensir and stapedial muscles. No more spasms.
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Explorer

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Posts: 38
Reply with quote  #5 
I've had this for 6 years now in the exact same ear.  Every time I finish talking, my ear spasms out and it makes a sound like an air brake decompression.  After a fair amount of talking, it starts to hurt and make me dizzy.  

It is incredibly distracting, and I find it difficult to engage in basic communication.

I have no answers, unfortunately.  There is no guarantee severing the tendons in your middle ear will solve the issue, and could potentially cause more problems.  Be cautious if you decide go that route.
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AnthonyO

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Reply with quote  #6 
Yes "andreguedes", everyone who has replied here, is pretty much on target with Tonic Tensor Tympanic Syndrome...AND...probably have it!  However, not everyone who has Hyperacusis, has TTTS...and vice versa, not everyone who experiences symptoms TTTS, has Hyperacusis.  But, it is my understanding (at least it is for me) that those who DO have both Hyperacusis & TTTS...the TTTS can "sound", a millions times louder.

I have had this for more than 5 years, much like our friend Explorer, and have learned certain coping skills to deal with it.  In most somber and peaceful settings, it can go by mostly unnoticed, but indeed, when trying to talk to someone while riding in a car with the window down just a half a millimeter, the sound of the wind acts as sort of a de-facto electronic "audio compressor/peak limiter/downward expander" of sorts! (I am a sound engineer by trade, so please pardon my tech-terms) But aforementioned stimuli and others that are seemingly benign, acts as a "chief audio barometer" or "engaged sound throttle" against everyday-type sounds.

It is this very 'uncommon, bizarre and macabre' experience that baffles the average E.N.T. physician, whereas the very first such doctor I went to see for analysis back in Summer of 2013...literally...suggested that I better consult with (you guessed it!) a "Psychiatrist".

A sad day indeed...

But, I had to pick up my own (auditory) pieces, educate myself, listen & converse with folks like you (with a kindred spirit) on this here Network and move forward.

I have gained much knowledge over the past 5 years...but still...don't consider myself an expert...but perhaps, just perhaps...a better "listener".

AnthonyO

Anthony Ochoa - Salem Radio Network Control Room, Irvine, CA - 2010-06.jpg     

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andreguedes

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Reply with quote  #7 

Thanks for your replies!

It seems that TTTS symptoms are less aggressive. The spasms are weaker and rare. [tongue]

But...

A couple of weeks ago, I started to notice some kind of tinnitus in both ears. A high frequency noise I can hear when I put my headphones or when I'm in very silent places.

I don't know if tinnitus was always there, and I became aware of it when paying too much attention to my ears ... or if I'm developing some kind of hearing loss.[yikes]

I read tons and tons of articles and forums talking about TTTS and tinnitus, and always thought: "Thank god I don't have my ears ringing, only annoying spasms". And now I got tinnitus! Coincidence? Is my brain producing things? This exact moment I can hear the tinnitus louder than never just because I'm writing about it. He likes attention!

You guys heard about some relation between TTTS and tinnitus?

I'm going to check my ears this week. [fingerscrossed]

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HobbesTiger

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Reply with quote  #8 
Quote:
Originally Posted by Explorer
I've had this for 6 years now in the exact same ear.  Every time I finish talking, my ear spasms out and it makes a sound like an air brake decompression.  After a fair amount of talking, it starts to hurt and make me dizzy.  

It is incredibly distracting, and I find it difficult to engage in basic communication.

I have no answers, unfortunately.  There is no guarantee severing the tendons in your middle ear will solve the issue, and could potentially cause more problems.  Be cautious if you decide go that route.


As with any surgery there is always risk. But the really can only be two causes to your spasms. You either have TTS or e-tube spasms. This is also known as palatal myoclonus I'm based on your symptoms that you've described it's not the latter. Yes those muscles help dampen noises and by cutting them you won't be able to go to loud concerts but I've had no ill effects for my surgeries and the spasms are completely gone. Again you're right there is no guarantee but I would never look back at this and if I had the opportunity all over again I would take it in a heartbeat. My spasms were so horrible so frequent that anything was better. I am now living my life and enjoying it.
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