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Supersmooth

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Reply with quote  #1 
Hello everyone. If you have ever suffered from TTM a.ka tensor tympani myoclonus or middle ear and want to know what it feels like having had both middle ear muscles cut then you might likfe to watch this video I uploaded on YouTube.



This video will tell you all about my operation that cured me from middle ear myoclonus. This will hopefully be of use to some mostly those on the hyperaccusis forum. If anyone has had surgery or can relate to me with anything to say please write to me.
 
However, it hasn't even been a week yet so I shall have to wait and see.
 
 

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Sean
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Suomi

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Reply with quote  #2 
I'm glad it went well for you and pray it will be long lasting relief.
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Romans 8:18 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
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LynnMcLaren

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Reply with quote  #3 
Hi Sean, (((( Smiles ))))

I know.. I'm a slow poke....
being more busy at this time, the holiday season and all...
and now that thats behind me..
I finally watched both of your videos...
You've been through alot haven't you...
I don't have a fluttering though I did expirenced something like that
at the tail end of my clamping twitching ear spasms to outer sounds thing...
More like a lite touch of twitch movement..
Even to soft like non hardly sounds...
And I didn't hear any sound like booming rumbling ect with that symptom..
More like static if any...
And I can't say I have a finger snaping clicking it's more like a bunch of clicks or crackling or rice krispies and it's not comeing from my jaw area...
I know this for sure now..
It's in my ears...
I can not move a muscle or lets say keep my jaw closed and just crackle
away by just doing...
It's just that and the rumbling booming thing...
Heard mostly in my left ear but also in my right with both at times...
I sometimes think of Marsha's old post on the bum bum bum...
That could be my boom boom boom as everyone may describe
a sound they hear slightly differently...
Except sometimes I have rumbling to...
And the roaring in my ears....
It all depends on what I do....
But I don't have fluttering anymore...
Just the rumbling, booming, roaring, crackling thing..
I think alot of it is caused by internal sounds now..
Though external sounds could trigger it but very rarely...
I'd have to sing with emphasis to make it rumble/ boom...
Or be in a certain acoustic situation and that usually doesn't happen much..
So even though it's a daily thing...
It doesn't allways have to happen...
In some ways....
I do have some control over it.....
I just don't know if it's bad enough where I would...
want to do anything about it at this time..
I'm not sure exactly what to do either anyway....
But the big thing for me is...
I did have real bad H and T at one time....
And thats much better now, so I just don't know if I should do anything..
To my ears....
Just in case... But I'm glad your feeling much better...
You deserve this.. You really do.. (((( Smiles )))

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Lynn
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LynnMcLaren

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Reply with quote  #4 
See... ((( Smiles)))

Thats another thing that goes into describing...
A feeling like I wrote above....
The tail end of it which I described as a slight touch of it long ago..
Was not like a fluttering of wiggling of ones fingers flutter..
But of a slight felt touch of squeezing ones fingers together and letting go..
A cramping cluching twitch.. 
And mine was triggered by outer noise or sounds..
Or soft sounds or even the movement of air at one time..
But my loudness sound sensitivity disorder problem...
I was suffering with that awhile before I noticed this spasmic thing...
This booming rumbling things is not that symptom.....
I see the difference and I expirence it differently....
Ones mostly internal.. Ones external...
One comes with inner audible sounds.... Rumbling, booming..
One came with no inner audible sounds except internal static at times...
And it reacted immediately to outer sounds.... 
The external I don't expirence at this time....
Only the booming, rumbling, crackling thing...   

Quote:

I don't have a fluttering though I did expirenced that at the tail end of my
clamping twitching ear spasms to outer sounds thing...
 


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Lynn
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LynnMcLaren

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Reply with quote  #5 
Ya.. ((( Smiles )))

I'm glad to see that some people do get relief from haveing this surgey...
Thats a good thing when it helps them....
But for me..
If my ear rumbled everytime I normally talked or normally sang ..
Instead of maybe a very faint/low rumble at times but with mostly
singing that I can deal with..
Like my tinnitus.. Get use to it...
And one that doesn't really bother me that much...
When it happens it's like....
I mean imagine a rumbling ear everytime one normally speaks...
Everytime.. Rumbling away...
Now... That would be truely awfull to expirence...
I was playing a memory game with my daughter of name that tune..
And I picked tip toe through the tulips you know Tiny Tim..
and she guessed it of course...
But .. Trying to sound like that does make my left ear really rumble alot..
It's the vibrato.. Like I've mentioned before..
The  "emphasis" of it..
The vibration, the higher pitch and the long tone..
Something about vibration and the higher pitches that my left especially..
Doesn't tolerate well....
With my voice....
I mean in the rumbling department..
But since I'm not a singer like in... have too...
It's not a real big deal to me...
Like bad hyperacusis or tinnitus was...
Don't want to mess with my ears, been their done that...
Plus.. I'm not sure if that would totally fix it either....
Or all of it....
I'm just not sure.....
But so far...
This is good....
Maybe it won't get worse....
It'll just stay the same.....
It seems to stay about same over time...
Not worse...
So maybe it will just stay that way.... ((( Smiles )))

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Lynn
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Supersmooth

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Reply with quote  #6 
Hello everyone, Just updating you all!
 
My ears keep spasming and twitching and rumbling like thunder and rattling like crazy... to sound, and the surgery is only two weeks old. THE TWITCHING is more tolerable though, than before the surgery. My ears no longer go squish, (trapped blood). They have taken out the packing and antiseptic ribbon in my right ear. 

 

I am sensitive to loud sound and it is driving me insane. The pulsitile "heartbeat" tinnitus (side effect) has subsided, unless I suddenly look up. I still get the occasional loud thumps/flaps in my right ear! But what muscle is it then if both stapedius and tensor tympani muscles have had their tendons or muscles sectioned? I have got my taste back on the right side of my tongue, but it is still a metallic taste. I think this is because when they operate on your ear using a tympanotomy they cut the middle ear muscles which is very close to the nerve that runs down your Eustachian tube and into the back of your throat which controls your taste as it is close to where tongue is attached to.

 

Middle ear twitches isn't as bad as before and it has only been two weeks since. I mean I have a stinking cold and even when I am sneezing; it irritated my right ear as it is sensitive to loud sound.
 

Does anyone get eyelid twitches?

 

The ear twitching has affected my sleeping as well and wakes me up, plus I ALSO have it in my left ear. My ENT said to wait until one ear has fully healed until doing the next. I will have a hearing test in a few months. Meanwhile, I am trying not to think about it. The best thing for me to do is to sleep in an upright position, (scab bleeds when lying on right ear) and just be grateful that I am not deaf, I have had no infections and that the operation has been a success. Mine is an extreme case and they will only do it unless you cannot tolerate with it. I couldn’t. If anyone decides to get it done then let me know but there are risks such as deafness, infection, bleeding etc! I guess I just need to give it time unless someone can tell me otherwise. If I go into a bar i just stuff cotton wool in my ears.

 

It isn’t really an ear problem it is a muscular one. However tensor tympani myoclonus is a rare problem that can be treated. Some people try to cope with it, by taking magnesium, muscle relaxants or listening to music. However, there is no doubt that stress makes it worse.

 

Keep me updated on your problems everyone.  

 

Sean - Your muscle twitching sufferer of a friend.
 
PS Here is my video I uploaded after having had my tympanotomy surgery:
 

 
Any questions or queries do ask.

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http://www.magical-moon.com
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Reply with quote  #7 
hello sean,

we have been in touch for so long and i am not surprised at all you still have a lot of issues going on, if not the exact same issues as before your surgery and maybe even more. i am very sorry to hear it didnt work out well as you were hoping and i can relate to it so much.
for people who dont know: i too had these particular surgeries to section the muscles in one (right) ear. in my case there was an interval of two months between both muscle surgeries. this happened a couple of years ago. after my first surgery where my stapedius was cut i had no clue if it worked but i noticed a terrible worsening of the hyperacusis.
the next week i noticed when i had someone on the phone talking into my left ear my right ear would still rattle, vibrate and rumble to that sound. i knew the surgery was a failure.

the doctors were then convinced it must have been the tensor tympani, and so was i and i was hoping so bad the next surgery would do the job. when i came round in the recovery room after the tensor tympani surgery my ear was ten times worse and reacted to literally every sound in the room. very wild spasming and thumping!

so just like you sean, i am asking myself how its possible when the muscles are cut the symptoms just continue. i asked the doctors but they had no clue, as always. i had the feeling my whole eustachian tube was spasming like crazy but the professor just said that was impossible. he said there are no muscles at all in there. anyway, the hyperacusis i got on top of my already existing hyperacusis and 'myoclonus' was just as bad as during my first hyperacusis stage two years before the surgeries. i was back to square one.

so either this is not a muscular thing at all, or the muscles keep spasming to sound because cutting doesnt make a difference, the broken muscles simply go on. does that make sense? lol.
probably by cutting them they only get more irritated, i dont know. all i know is that having a tenotomy, so a sectioning of the earmuscles does not solve what seems myoclonus and just cause a bad hyperacusis to loud sound close to your ear, even your own voice. i still cannot raise my voice by this and with every loud sound i feel a bad vibration in that ear, combined with some kind of nerve attack. i cant describe it.

i think the state of the earmuscles determines in what way one has a problem with sound. mechanical hyperacusis is likely to be caused by too much tension in those muscles or on the other hand by weak or paralyzed muscles, which is the case after surgeries like you and i had.
i strongly recommend to not ever have this surgery done. sean, please hang in there, you will slowly get used to some of the symptoms and you are still in your recovery time. and at least.. you have tried.

talk later and good luck for now,

astrid


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LynnMcLaren

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Reply with quote  #8 
Hi Sean, (((( Smiles ))))

Are you O.K. ?????
I know your feeling not so good at this time..
I'm not sure what to say but maybe for you it will calm down...
Go away in time..
I don't know exactly how it got better for me but I did many things back then..
To try to help myself.. Castor oil in my ears and packs....
I was talking magnesium for not just months but more like year/years..
B vitamins, sound therapy for my hyperacusis which brought my hyperacusis
down over time.. Acupunture for the nerves.. Healing of my ears/nerves..
I went to the Chiropractor but the chiropractor I had at that time wasen't as
skilled as my acupuncturist was.. Or the Neurological chiropractor that I had
been seeing for way over year after him.. I recommend for thoses with neurological disorders that want to see a chiropractor to find one with this
uncommon speciality..

Like Astrid describes.. My hyperacusis problems was alot like hers in the
way of the wild spasming ears... It was a clamping feeling twitching disorder.
It felt like nerve pain, cutting slicing, ice pick, shocks, it hurt..
Sent my too my room thought I spent alot of time there before It got that
bad as I was expirenceing the symptoms of a loudness disorder before that..
But the spasming ears...  

And it happened immediately with outer sounds from soft non decible like
low sounds at one time... To louder sounds like voices with a pounding 
punching physical assault on my ear drums.. Sound hitting it very hard..
Super hard and sounds were unbelievable super duper loud.. I could hear
threw walls and way outside.. I had the rumbling vibrational hearing thing
at one time.. And that was very hard to have that and travel in a car anywhere..

Almost impossible without some incentive to try to get help ...
It was muff /bose and earplug moment and the rumbling was still there....
I read Daves post and I can identify with him as well.......
But for me.. Talking about me and my solution at that time..
And still...
In my circumstances, I tried to cope/get through it with my faith of
beliefs which helped me not to hurt myself and keep me alive..
And that was important for me to have...
I had to do it... I had to call out all the troops..
I was hanging by a thread.....
Scared my husband who never heard me talk like that before.....
I was right there.. Twice.. The first time with my 24/7 tinnitus...
My hyperacusis and then this....
I really feel for you Sean... I really do...
Your young, your very talented and likeable...
You have a very strong but sensitive nature which I like...
I'm not a U- Tuber but I watched your video....
I just believe.. You will get through this somehow....
You must find a way and whatever happens....
Weither you get better or not right away ect.....
I believe you will and you must find a way to get through this ..
You must find a way.. Something to carry you through this expirence....
Friends, family, reading, hobbies... something....
This seems to be a very hard time for you, at this time and point in life..
Things can change, things can improve, but you must cry it out and then
find whatever that thing is.. That will help carry you through this......
Thats how I got through it.....
Thats what worked for me.... This may pass in time..
Just remember that...
Today is today.. Tommorrow is tommorrow.. O.K.. 
You can get through this.....
It's hard right now but you must and you can.
You will... You have too and you will..  (((( Smiles ))))       


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Lynn
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texx8

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Reply with quote  #9 
Quote:
Originally Posted by Astrid

probably by cutting them they only get more irritated, i dont know.


maybe TTM is a neurologic problem, and the real problem is in the brain...
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LynnMcLaren

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Reply with quote  #10 
Hi Tex, ((( Smiles )))

Good point....
I think my brain had alot to do with it as well...
I think a part of it for me had to do with the efferent nerve...
Sound sent afferent to the brain and played back too the muscles as too
loud.. I think for me.. It was a muti facet thing....
My clinical audiologist looking back at my records  said I was
comeing down with H the whole time..
Which may or may not be true as my T could have been pushed into it
by certain events that happened to me after....
But my Doctor looking at my medical records...
told me it was a brain thing.. A neurological problem..
So.. For me.. I think it might have been both...
But.. Good point.....

Quote:

maybe TTM is a neurologic problem, and the real problem is in the brain...



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Lynn
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Mestermann

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Reply with quote  #11 

Hello Sean,

 

We’ve never talked, because I joined here while you were about to have surgery performed, so i lingered in the wings. But I followed your predicament, and I am very sad to hear that the surgery didn’t help you after all, having seen your initial positive report on YouTube.. I feel so sorry for you; I can imagine how devastated you must feel.. I have been living in this hell for 20 years, so I thoroughly sympathise, and I have been contemplating the same surgery myself, as nothing else has worked.

            It is disconcerting to see that even surgery didn’t work for you. You ask a very relevant, logical and existential question: ”But what muscle is it then, if both stapedius and tensor tympani muscles have had their tendons or muscles sectioned?”

                Well, Sean, it would seem to me that since your initial experience was positive, as long as the ear drum was out of business after the surgery, then the problem might be connected to the eardrum itself. I do not believe the mumbojumbo of blaming this on the psyche. It is definitively a physiological problem; hearing voices would actually be nice for a change. But what we hear is the organism actually doing something. So I guess it is back to diagnosticians for you. Insist: They have to find out what is happening!Don|t give up!


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LynnMcLaren

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Reply with quote  #12 
Hi Mestermann, ((( Smiles )))

Interesting concept.....
The experts on this.....
If anybody is truely an expert as this problem is so perplexing in some...
But they have seen doctors over this, been through the mill so they know
alot...

Astrid, Lib, ect......
Any thoughts of possibilites on this...
Could this be a possibilty???
For Sean.. or at all... 
What are your thoughts on this.....

Quote:

Well, Sean, it would seem to me that since your initial experience was positive, as long as the ear drum was out of business after the surgery, then the problem might be connected to the eardrum itself  


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Lynn
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lib

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Reply with quote  #13 
sean,
you have some relief already. i suspect the middle ear is still full of blood as it takes 6 weeks to drain. the cut tendons can still squirm and cause minor noises, but if its full of fluid this will create a lot of noise.....give it time.
lib
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Reply with quote  #14 
Hi Astrid!

I am so glad to see you back!

Marsha
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Reply with quote  #15 
hello everybody,

thank you marsha! .

on topic: about the eardrum that may have to do with it... i doubt that is true. after the surgery the ear is packed but my spasming just went through it. i must add that i didnt have this right after my stapedius surgery because the ear seemed quiet during the first days afterwards. however after the tensor tympani surgery ( the tt is connected to the eardrum ) the spasming was far and far worse and it seemed very deep inside my ear, somewhere between throat and ear, hence the thought of the eustachian tube being the culprit but this was dismissed by the doctors.

texx wrote about the problem probably resulting from the brain and like many disorders this may be right, after all, this goes for any sensation in your body. i myself think that with hyperacusis and myoclonus the problem can lie at any level in the chain between brain and earmuscles, because of the neural connection between the two. that would also explain that many hyperacusis cases emerge from a tmj disorder where some nerves can be partly trapped and make the muscles go numb or spasming. conclusion: hyperacusis and/or myoclonus in all varieties.

well these are my thoughts... nice to see you here as well lynn . i feel like im back in time... and i even like it!

regards for now and take care all,

astrid


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Supersmooth

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Reply with quote  #16 
Quote:
Originally Posted by Mestermann

Hello Sean,

 

We’ve never talked, because I joined here while you were about to have surgery performed, so i lingered in the wings. But I followed your predicament, and I am very sad to hear that the surgery didn’t help you after all, having seen your initial positive report on YouTube.. I feel so sorry for you; I can imagine how devastated you must feel.. I have been living in this hell for 20 years, so I thoroughly sympathise, and I have been contemplating the same surgery myself, as nothing else has worked.

            It is disconcerting to see that even surgery didn’t work for you. You ask a very relevant, logical and existential question: ”But what muscle is it then, if both stapedius and tensor tympani muscles have had their tendons or muscles sectioned?”

                Well, Sean, it would seem to me that since your initial experience was positive, as long as the ear drum was out of business after the surgery, then the problem might be connected to the eardrum itself. I do not believe the mumbojumbo of blaming this on the psyche. It is definitively a physiological problem; hearing voices would actually be nice for a change. But what we hear is the organism actually doing something. So I guess it is back to diagnosticians for you. Insist: They have to find out what is happening!Don|t give up!

Hei Erik, hvordan har du det?

I am not saying my surgery was a failure, I am so glad I have had it done as I no longer have the fluttering of stapedius and tensor tympani muscles or the sensation of a trapped moth or butterfly wanting to get out of my ear, due to middle ear myoclonus. However, what I am saying is that the side effects are one to watch out for, I currently have increased subjective tinnitus, and sensitivity to loud sound, even sneezing can start the rumbling and ringing noises. I have also have pulsitile tinnitus. The two muscles “Stapedius and Tensor tympani muscles” are there to protect you from loud noises, so for instance when an aeroplane fly’s by making a loud sound, those two muscles contract and without them you will be sensitive to loud sound as I am now. The main risk is deafness, infection and bleeding etc. I will be going back in three months to have a hearing test. They have to be absolutely certain that my right ear is fine before operating on my left. I currently have a stinking cold and flu which doesn't help. As lib said, I just need to give it some time to recover.

 

What do you do to mask your symptoms?

 

 

håper du har det bedre nå, ha en fin helg Erik!

Tusen takk

vennlig hilsen

had et bra
Sean

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LynnMcLaren

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Reply with quote  #17 
Hi Astrid, (((( Smiles ))))

Nice to see you around too and I read what you wrote......
And I hope you do as your like an old friend from long ago....
Back in time though we still have some issues with our ears....
Though mine has improved alot from my worst of and yours.. Hummmm......
But the myoclonus thing.....
Seems to effect people differently as some have classic hyperacusis
which to me means full blown regular type H or maybe slight H or maybe
no H just this symptom..
Or maybe just some have hyperacusis plus myoclonus like one can
have tinnitus with hyperacusis maybe related yet.... 
The differences there also as well....
Yet also.... 
In a way a shared event by thoses who have went through it in some
kind of form as well.....
I don't know who spends alot of time studying theses forms of myoclonus
and there differences and outcomes like one does in group discussion like
this on a gathering together on a message board..
And also guest medical providers ect.......
Who happen to read this board...
Learn also from our expirences and different outcomes as well ?????             

Quote:

well these are my thoughts... nice to see you here as well lynn . i feel like im back in time... and i even like it!
 


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LynnMcLaren

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Reply with quote  #18 
Hi Sean, (((( Smiles ))))

I'm glad your feeling better about the surgery....
I was concerned at first as on 1/11/08 you wrote there has been 
no fluttering or thumping so I wondered why it came back...
After the surgery... 
As you wrote...   

Quote:

My ears keep spasming and twitching and rumbling like thunder and rattling like crazy... to sound, and the surgery is only two weeks old. THE TWITCHING is more tolerable though, than before the surgery.


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LynnMcLaren

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Reply with quote  #19 
Hi Sean, ((( Smiles ))))

And also in reading your posts...
I don't remember you mentioning you had a loudness disorder problem..
Like H or being sensitive to loudness before...
Like H people usually are, but even much more then that...
Is this a new symptom ???
You didn't have this before??
Maybe it will just reset itself or something...
And the sensitivity will go away...
Hopefull, thats what will happen for you....
Hang in there...
let it heal and maybe it will get better.....
It must be hard for you at this time but...
Maybe this shall pass.. 
Just give it time.....
And see...   

Quote:

I am sensitive to loud sound and it is driving me insane


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Lynn
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Mestermann

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Reply with quote  #20 
Hei, Sean, og takk for hyggelig hilsen!

I must somehow have misinterpreted your message - maybe I am not yet well enough into the finer distinctions of different symptoms. I am glad to hear that the surgery did give you relief from one set of symptoms. I am seriously contemplating having this done myself. I have no subjective tinnitus, but a Tensor tympani/stapedius twitching in my left ear, occuring at almost every moment of falling asleep (and almost solely then, not in a wake state), often reoccuring again and again in one night. depriving me almost totally of any good night's sleep for many years now.

What I do to mask the sound, or neutralise it, is to get up and listen to running water. Making shh-sounds with my voice or rubbing my scalp vigorously to create a similar white noise can also help (if I can't be bothered to get up). Headphones with white noise don't seem to help, somehow.

My left ear is also sensitive to loud or unexpected sounds, but it is the fluttering and twitching that is torture.

I am looking into different treatment options through my physician right now, one is surgery (being irreversible and with the possible side effects you mention), another is trying Botox injections first, to see if knocking out those little buggars is actually something that would help, before contemplating surgery to achieve a permanent relief. Did you try this before deciding on surgery?

Med mange vennlige hilsener fra Oslo og
Erik

(Oh, btw, I looked at your home page: Close-up magic was my favourite hobby for many, many years, and its practice and theory interested me greatly, and far beyond the occasional novelty trick; I did cards, coins, cups and balls etc. After becoming a father, there wasn't much time for some years; now, however, my 12 year old son is really getting serious about it, roaming around in the (expensive) contents of my big magic cupboard, and right now mastering a much better cups-and-balls routine than I ever did, based on the Vernon routine, with his own little inventions and amendments, and with me as an ever-interested coach. )

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Christopher

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Reply with quote  #21 
Hi Sean. How is the recovery, hope all is well.

Chris.
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RMi11er

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Reply with quote  #22 
wear some db15s  throughout the day or 25s that should take care of your super sensative hearing since those muscles are now gone
I don't that it's overprotection if your wearing like musican 15db earplugs you still hear everything just fine so its not like your blocking sound only really loud sounds between 85-105db
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Supersmooth

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Reply with quote  #23 

Hello everyone on the HF.

 

It has been one month on since my tympanotomy surgery that sectioned both stapedius and tensor tympani tendons.

 

I did have a stinking flu last week, but better now. I do hear my ear drum squeak and go "Squish" occasionally when I blow my nose. Also when I sneeze I can hear some pulsitile tinnitus but this is starting to subside. However I am getting high pitched "sissing and whistling" ak.a Subjective tinnitus and occasionally, and disappointingly I can STILL hear some low pitch ear thumps but they are more of a rumbling or vibration than fluttering as if there was an insect trapped inside my ear beating its wings, tapping on my ear drum "Middle ear myoclonus"

 

Everything is far more tolerable now than before and I am still waiting for my right ear to heal until they consider the same bilateral sectioning of the two offending muscles in my left ear. I shall have a hearing test in two months time. Having said that the two muscles contact to protect your ear from loud sounds, but seeing as they are no longer attached to my Incus or stapes, thus consequently, very sensitive to loud sound. Sometimes hearing someone shout or sneezing.

 

Like I said I no longer feel the urge to get an Excalibur or sharp letter opener to thrust into my ears.  

 

I shall keep you updated on my conditions and anyone considering surgery for middle ear myoclonus must be aware of the risks and side effects, such as bleeding, deafness etc. Please watch my video I uploaded on YouTube which can be found here:

 

  

You might find this abstract and article interesting to read, which can be found here.
 
http://www.dizziness-and-balance.com/disorders/hearing/tinnitus.htm
 
All the best
Sean


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Reply with quote  #24 
On a final note to those who have had "middle ear myoclonus" surgery - DON'T pinch your nose and blow making your ears pop! I did this thinking it will ease the pulsitile tinnitus or sensation of fullness hence your ear will be packed with antiseptic stitches and cotton wool after. Do NOT make your ears pop, it feels as if your ear drum is loose and rattles, even when you cough and it can trigger off bleeding and subjective tinnitus.
Read my above post and watch video!
Will keep you updated!

-Sean

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bigfred31

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Reply with quote  #25 
i hear squeks when i breathe hear sounds or sneeze to sean

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Reply with quote  #26 
hello sean,

i have been following your progress. its good to hear your myoclonus symptoms are now tolerable despite some side effects that may or may not get better. i guess your symptoms and the symptoms of other people who must have had success with the surgeries are not the same as mine, although it sometimes seemed so.

i have listened to the tape on the website you mentioned where you could hear stapedial myoclonus as they say it sounds. i didnt recognize myself in it for one bit. my myoclonus sensations or whatever it is do not sound like a clicking or tapping sound but more like a wild thumping/vibration as if something is spasming deep inside. its not there just like that, but mainly in response to external sound coming into the opposite ear and thats why i cannot use the phone because of it. it reacts to high pitches in the ear that was done, and in the other ear it reacts to low pitches, yes my ears are bizarre! lol.

its more of a feeling than a sound to me. when i read that website it seems i have no myoclonus at all, but i know they are wrong as it comes in many forms. do you recognize your own myoclonus on that site?
the soundsensitivity is the logical consequence of the surgeries. i knew in advance this would be the result but my doctors said it would not make a difference for me as i already had hyperacusis. well, the surgeries only got me back in time regarding the hyp, back to the worst stages. you know the rest.

as for the side effects you mentioned: bleeding and deafness was never mentioned to me. the doctors said a risk was a paralyzed half of my face and even one doc refused to do it because of that reason. the others just said i should be aware this could take place. now, years later, i cannot believe i took those incredible risks and my goodness what have i done. the stapedial reflex is now gone, a reflex that functions as a hyperacusis prevention mechanism because it keeps loud sound away from the inner ears. now after these surgeries the buffer is gone and loud sound has a free way to cause damage. how do you manage??

oh about popping... sean i remember after a few weeks all i did was popping my ears after the second surgery ( tensor tympani sectioning ) because i obviously felt this was needed. of course it never worked. what happened to me (and still!), was that a pack of air would stay stuck in my right ear after such valsalva maneuver, and only swallowing many times would make it go away, sometimes only after a long time.

i keep following your experiences after all this,
regards from
astrid


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bigfred31

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Reply with quote  #27 

my ent just told me i had senstitive ears and to take neurotonin. im in hell and these ents dont know anything.

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Reply with quote  #28 

Oh! Dear o dear....No..No..NO!
 
The ear thumps came back this morning, albeit briefly and despite the thumping and fluttering is more tolerable now than before my surgery, I was and still am shocked and devasted that it has returned. I still do not regret the surgery, but how on earth can it be otologically or biologically possible for the middle ear muscles to start twitching again if they have been divided and sectioned? For Pete's sake - Has the tensor tympani muscle grown and re-attached itself to the tympanic membrane? *LOL*
 
Meanwhile, my right ear drum still rattles and the persistant ringing in subjective tinnitus continues. In my left ear the twitching and vibration/fluttering continues. I guess, that it could be due to the fact that I have been so use to it over the years that any noises will make me think OMG, - Tensor tympani myoclonus is back. It cannot all be in the mind surely now!?

Still it has only been six weeks since surgery, so time will tell.
 
Sean
-PS, Still sensitive to sudden loud sounds, i.e The slamming of a door!



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Reply with quote  #29 
Are you experiencing the thumps and fluttering in the ear that was surgically done, or just the fact that the symptoms have
returned at all? You would still suffer with this in the
ear waiting to be done would you not? From others who have
posted and had the surgery, it seems the spasms continue but
are less frequent, less severe and are more tolerable. Just as you have noted.

Hang in there !! It may take more time for things to settle
down. You are having some relief so it is getting better.



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Reply with quote  #30 

The thumping and butterfly fluttering has well and truly returned, i just hiccupped and it started of the middle ear muscles to spasm and yes it is in my right ear that i had my surgery done on. My right eardrum rattles as if it was loose, hence the persistent ringing tinnitus has continued. Okay, it isn't lasting hours on end when prior to the surgery the ear twitching would wake me up at 5am and last until mid afternoon, but i think that slowly but surely it is coming back to haunt me. Does anyone have tardis? The Samaritans are engaged!

 

Looks like it has been the surgery that never was!
 
PS- Thank god I didn't go privately. I am so glad my operation was funded through NHS, as I wouldn't have got much change from £3600 plus theatre fee's.


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LynnMcLaren

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Reply with quote  #31 
Hi SuperSmooth, ((( Smiles )))

I have not listened yet to the tape on the website you mentioned where
you could hear stapedial myoclonus as they say it sounds..
I've had kids with colds this weekend and one home from school today resting so.... 
I'd like to see what that tape sounds like first...

But my condition was alot like Astrid's though some differences at the same
time.. But most of that though it took like a year...
though I think it didn't total go completely away when it was a light
touch because I wrote about it going after that on the old board as well
in some old posts..

So I guess it was alittle touch and came back alittle but then it was
getting all better as that symptom went away for me..

And now I have this different like thing..
Related ??? Or.. I'm not sure but back then I took magnesium for a long
time when I had that spasming ear thing.. In the hopes of it helping in
some way because I read alot of things about magnesium and muscles..
And of course B vitamins for nerve regeneration just trying whatever I
could... To try to heal whatever it was that went haywire for me...

just my way of going about it but I'm going to listen to that tape later..
And see what it is...

You Take Care and I don't think it's totally stress related either..
Thought stress can effect/ trigger alot of physical conditions and thats a
fact it could.. But I think the set up/ the condition has to be their first TOO
be triggered  as not everyone who's stressed out get's this.. 

And my ears rumble or boom boom boom no matter if I'm feeling pretty good
or not.. Hopefully in time.. We'll see what happens for you..
But stress though probably not the total cause could trigger it more...
So.. Keep that in mind though not easy to do.....

With a symptom such as that happening at this time but maybe alot less
in the future.. We hope..  ((( Smiles ))) 


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LynnMcLaren

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Reply with quote  #32 
I'm trying to figure out what website and what tape is that?

Is it a link posted above????
My crackling/clicking in my ears now....
Is different from the ear spasming I had in the past...
My ear spasming thing in the past as well was not a clicking or tapping sound.. If there was any sound to it.. It was static like.. Blown speaker..
And more like a wild clamping movement thing as if something inside was
reacting to outer sounds.. Low decible to non like sound...
Like something was spasming deep inside..
Or on the eardrum area itself....
Something was reacting with movement clamping down spasms..
It was pretty constant at one time....
More like that..... And at it's worst..
Like someone was actually physically punching/ attacking my ears inside...
The outside sounds were actually heard and felt inside my ears...
Besides it being heard as super loud...
The spasming made outer sounds worse....
As I also expirenced them inside my ears as well....
I felt them.... Like something spasming deep inside..
Vibration movement clamping twitching...
But not like a booming thing...
More like that....  
Astrid wrote....  

Quote:

i have listened to the tape on the website you mentioned where you could hear stapedial myoclonus as they say it sounds. i didnt recognize myself in it for one bit. my myoclonus sensations or whatever it is do not sound like a clicking or tapping sound but more like a wild thumping/vibration as if something is spasming deep inside


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Reply with quote  #33 
hi Lynn,

on feb 9 Sean mentioned the site dizziness-and-balance.com, please go back to his post for the complete link, where you can hear a recording of stapedial myoclonus. it doesnt match my symptoms and never did, yet i had the surgery to section the muscles which only made matters worse. i think doctors have no clue what myoclonus should feel and sound like. its hard to imagine for people who have normal ears anyway.

when i read your symptoms i read my own. one would say its an expression of hyperacusis, the other would call it a strange type of tinnitus, the next says this is typical myoclonus. theres no way to trust any doctor at this point. i saw numerous doctors and they all gave me another diagnosis. when i decided to trust the last one, who said this is clearly stapedial myoclonus, i made the mistake of my life.

whenever i mentioned the tensor tympani syndrome they looked at me as if i was coming from mars. i guess my ears indeed were. anyways, when the hearingtest-results are fine, then your ears are fine, no matter if you complain of thumps, rattles, crackles, twitches, clamps and booms. how bad it is they dont care, simply because no professor ever taught them about these hearing nightmares. so it doesnt exist.

theres a world to discover for hearing specialists who do care. a world we already know.

talk later lynn .

astrid

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Reply with quote  #34 
Hi Astrid, ((( Smiles )))

Thats why when you came to the board back in 03....
I could identify with what you were saying and how you were explaining it..
Back then.. It all made sense to me because I was haveing problems with
that as well... Very severe after my collapase due to sound traveling ect..
Exposure of that month.. I suffered alot with that for months untill I finally took the chance...

on letting a tech guy into my home to set up my internet connection..
And came to the network... Long overdue..
That was very hard for me to do at that time..
As my tolerances were so low back then......
But thats why I agreed back then with you so much on your description
of it..

I could identify with you as well as alot.....
of others on the board in certain ways as I had severe from profound H
and sound reactive tinnitus so I could take bits and pieces from other peoples stories..
Of what they were going through... 

And understand them and fit them together as I had bits and pieces of each..
From my start of tinnitus to sound reactive tinnitus to hyperacusis
as I could call it hyperacusis as a noticeable loudness disorder all in 02.....
Recorded by my H.M.O they recorded everything as I keep running back to
them for help...That didn't work well for me at all... 

To worsening hyperacusis to a terrible collapse of tolerances brought on
by being around noises and around then.. My ears started the clamping
twitching becomeing very reactive to outer sounds.. I think I might have
injuried/irritated a nerve.... 

Thats when I hit profound.. I was allready doing not so well before that
as I was recorded in the 50-51 zone before it just dropped for me...
Where I couldn't even leave the house again like I force myself too..
Before that event...

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Reply with quote  #35 
Hi Astrid, ((( Smiles )))

I agree with you.. Still a world to discovery because as I don't believe
they know everything there is to know....
about theses types of disorders yet..
I think they are still walking in the dark in some ways on this..
And not everybody agrees on everything...
But the people who do suffer with this want to tell their stories and
expirences and compare it to others who's ears seem to pop, crackle,
rumble, boom, clamp, twitch, do the rapid fire movement Da Da Da Da
Da thing, flutter, thudding ect.....

And compare with thoses who have classic hyperacusis and thoses who
don't and thoses who may have just some aspects of sound sensitivites
or problems with real loud noises..

And seperate it in some way as I think if I underwent the surgery my
results may have been alot like yours were...

Getting to the root of the problem as I don't think it's just stress but stress could make it worse like any condition the setup of it...
But through studying it, the different varietys and  the outcomes of
it for different people maybe over time..
There will be a better understanding of it..

Thats like saying hyperacusis is just stress related, or tinnitus for that
matter and we know now there is more to it....
and a real physical reason for suffering from theses disorders though we
may not know them all at this time...
But...

We cannot just wish them away as it's not just a mental thing..
Something physically I believe in most case's went wrong and as in any
physical condition.. And stress can make it worse....

And yes.. There is a world to discover for hearing specialists that do care.
And not everyone wants to deal with rare to uncommon disorders they just
want to throw drugs/medications at it.. It's cheaper that way for them
and less time consumeing too..

A world we allready now and in alot of cases for hyperacusis and tinnitus as
well.. It seems like alot of them just want us to go away.. It's to difficult
and time consuming for them.. It's eaiser to say.. It's all in your head and
weither a condition may be.. The brain is a phyisical organ too....
It can get injured, malfunction, develop a glitch or get diseased...
like any other organ in ones body could as well...

This is physical like hyperacusis.. Very real....
So now it's like..
How to treat it besides with heavy meds that may not work for it...
For most....

Will write more later....
My fingers are getting tired and it's a beautifull warm day...
At least it's not snowing or raining with a high probability of bacteria today..
You haven't read about that???
My poor little plants.. How do they live???
With what goes on in this world.. 
No wonder people in this world are getting sicker and their immune systems
are just shot...
And the jump in lupus, multiple sclerosis and other afflictions caused by a
misfireing immune system is real....
Read the daily news....
As overuse of antibiotics cause's new and drug resistent strains..
As overuse of " anything " that bypasses our natural defenses..
Will do, as well...
When it works it works well and overuse of anything will eventually do that...
will get stronger and mutate into new strains over time..
That are resistent why the world gets sicker not better from being over
treated by it all.....
What we mean to protect ourselves from and cure artificially..
We will create.... 
With over use of...
Inside our bodies..
Little incubaters ....
When it works it works well.....
Now out to get some vitamin D..... 
That works well for me... (((( Smiles )))

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bigfred31

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Reply with quote  #36 

my ears dont thump but has this happened to others. when i take a shower my tinnitus ramps up and sounds very squek like a loud microphone. i have no crackiling just loud ringing in my ears. which gets worse with any sound. has this happened to anyone else. is this stapedial myoclonus or something else. anyone try valium for myoclonus and did it help you.

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Reply with quote  #37 
Hi Big Fred, ((( Smiles )))

I haven't listened to the sounds of it like Astrid wrote about above that
Sean posted about it yet....

but my symptoms were alot like hers and I am going to write more on that
later.. But will be off for the weekend soon..
But I read what you wrote and...

My first symptom was tinnitus.. My tinnitus worsened so much...
When I stopped being able to take showers it was because of my tinnitus..
Like your's.. I don't know how a shower would have sounded like with
classic hyperacusis because I never took one with bad H or for along
time after..
But.. It must be far worse with that too...
Classic Hyperacusis made my tinnitus far worse then when I stopped
showering...  

Yet.. I had that and I take showers no problem now..
My condition got better from all that...
But Stapedial Myoclonus..
Or the Tensor ...
I think here we are talking more about spasming ears , clicking, crackling,
rumbling, boom boom boom booming , ect... 

Noises/sounds heard within the ears or ears spasming , spasmodic,
clutching , clamping, twitching, which can react to outer sounds and
some that seem to be effected by internal sounds..

I don't know but the tinnitus thing that reacts to outer sounds..
May be something else as thats much better for me..
For along time now....
But my ears still crackle, rumble, boom...
And my tinnitus is much better...

I'm thinking from all I've read from others ect...
That sound reactive tinnitus may be more related to sound sensitivites
then mycolonus....

Thats just my take on it now..
Astrid may have some thoughts on it as well..
If she's around and not busy...
She has read up alot on myoclonus...
I'm not sure what she thinks about it..... 
Thats all I can say..........
Sorry wish I could tell you more... (((( Smiles ))))


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Supersmooth

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Reply with quote  #38 
Well i woke up this morning and I heard some low thumping sounds in my right ear between 6-9am. Although these ear twitches are less intense than prior to my tympanotomy operation, i am begining to wonder if i woke up and heard these sounds or if the thumping/twitching woke me up???? 
Because there is a difference between the two.
 
My ear operation over two months old! Anyone thinking of having this operation, don't get it done unless it is an extreme or severe case and prevents or disturbs you from sleeping or concerntrating!
 
Like i said this morning I woke up and heard thumping in my right ear but it is more in my head than outer, but how can it be biologically possible if the middle ear muscles have been sectioned? Did i wake up then hear the thumping or get woken up by it? This remains a mistery!

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Reply with quote  #39 

Quote:
Originally Posted by Astrid
hello everybody,

thank you marsha! .

on topic: about the eardrum that may have to do with it... i doubt that is true. after the surgery the ear is packed but my spasming just went through it. i must add that i didnt have this right after my stapedius surgery because the ear seemed quiet during the first days afterwards. however after the tensor tympani surgery ( the tt is connected to the eardrum ) the spasming was far and far worse and it seemed very deep inside my ear, somewhere between throat and ear, hence the thought of the eustachian tube being the culprit but this was dismissed by the doctors.

texx wrote about the problem probably resulting from the brain and like many disorders this may be right, after all, this goes for any sensation in your body. i myself think that with hyperacusis and myoclonus the problem can lie at any level in the chain between brain and earmuscles, because of the neural connection between the two. that would also explain that many hyperacusis cases emerge from a tmj disorder where some nerves can be partly trapped and make the muscles go numb or spasming. conclusion: hyperacusis and/or myoclonus in all varieties.

well these are my thoughts... nice to see you here as well lynn . i feel like im back in time... and i even like it!

regards for now and take care all,

astrid




Well i woke up this morning and I heard some low thumping sounds in my right ear between 6-9am. Although these ear twitches are less intense than prior to my tympanotomy operation, i am begining to wonder if i woke up and heard these sounds or if the booming, thumping, twitching woke me up???? 
Because there is a difference between the two.

 
My ear operation over two months old! Anyone thinking of having this operation, don't get it done unless it is an extreme or severe case and prevents or disturbs you from sleeping or concerntrating!
 
Like i said this morning I woke up and heard thumping in my right ear but it is more in my head like in my eustachian tube, than outer ear, hence both muscles are no longer attached to the eardrum! But how can it be biologically possible if the middle ear muscles have been sectioned? Did i wake up then hear the thumping or get woken up by it? This remains a mistery!
 

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Nowhearthis

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Reply with quote  #40 
Are you having regrets about the operation and reconsidering
having the left ear done? Your comment to those warning against
the procedure unless its a severe case makes one think you
are having second thoughts.

Have the spasms stopped or subsided in the right ear at least?
Are the thumps, booms and twitches a daily constant annoyance
or happen infrequently? Has the T minimized?
How sensitive is your hearing in the right ear? What else
can you share about your post surgery (both good and bad)?
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Reply with quote  #41 
hello lynn and bigfred,

my experience is that after each shower my ears end up buzzing like crazy, and i would not say that my initial tinnitus just gets louder but this buzzing thing is an extra tinnitus. imagine thousands of bees echoing in my head. my hyperacusis and myoclonus issues are pretty much related to high frequencies involving all water sounds or anything that sounds like water, so hissing sounds. results can be anything from deep thumps to rapid rattles to ridiculous intolerance.
to bigfred i would like to add that what you describe certainly doesnt sound like myoclonus but rather like reactive tinnitus, not an official term, but who cares as long as this describes what you have. it just means that external sound can have this effect that you experience a new or louder tinnitus than you already had. in my case this reactive tinnitus effect lasts from ten minutes to around half an hour after for example a shower.

hope this helps some... though im afraid it will not, lol.

astrid

--

hello sean,

as i said before at times i tend to think the known muscles in the ears are not responsible for all the thumps and rattles. when i do some research i see more possibilities, that obviously dont make sense when hearing the opinion of the professor who did my second surgery and said there are no other muscles. at times i think the whole eustachian tube is moving to sound. i know you have something else as you dont have your symptoms happening when you hear sounds so how can we compare! bad spasming can wake you you up at night, thats what i remember when it seemed my tmjd disorder was acting up and i got new vibrations between my ears and throat.
i agree with you that the surgery should better be avoided.

take care and keep us posted!

astrid

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dougw

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Reply with quote  #42 
Hi,
 
Has anyone out there had complete success with the surgery? Mine is pretty bad, all of the time. Affects sleep. I can move my head in different positions to engage the crackling sounds. I have at least 3 different sound in the left ear. Thank god the right ear has none.A muffled flutter at times, a high pitched fast crackling that may start out slow and speed up to a silent halt, only to start again a few seconds later. The other is less frequent, but occasionally I will get a loud roaring crackling that is accompanied by a slight dizziness or light headiness. I'm in Tampa Florida. I was going to schedule to have this done soon, but after reading about some of you who had the surgery and still have the same problems, I don't know what to do.

Doug 

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SandyTH

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Reply with quote  #43 
Hi Doug,

If you do a search of Lib and Joe, you will find they have had successful surgeries.  I believe Joe lives in Fla.

Sandy
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lib

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Reply with quote  #44 
hi doug,
i have a ton of relief, please read my posts and joe m, his was a sucsess, i also have a friend in florida who had the same procedure and is much better.
most that have a great outcome see to dissapear from the boards to move foward.
good luck
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Reply with quote  #45 

Quote:
Originally Posted by dougw
Hi,
 
Has anyone out there had complete success with the surgery? Mine is pretty bad, all of the time. Affects sleep. I can move my head in different positions to engage the crackling sounds. I have at least 3 different sound in the left ear. Thank god the right ear has none.A muffled flutter at times, a high pitched fast crackling that may start out slow and speed up to a silent halt, only to start again a few seconds later. The other is less frequent, but occasionally I will get a loud roaring crackling that is accompanied by a slight dizziness or light headiness. I'm in Tampa Florida. I was going to schedule to have this done soon, but after reading about some of you who had the surgery and still have the same problems, I don't know what to do.

Doug 

Hi Doug my video of the surgery and how it went can be found here, so do watch it. This was uploaded in JANUARY!



LET ME KNOW WHAT YOU THINK!

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Supersmooth

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Reply with quote  #46 
Well, three months on there is not alot to report!
 
My left ear flutters like old fun but my right ear "operated ear" still has occassional low pitched thumps, despite surgery that sectioned middle ear muscles, but these are more tolerable now.
 
My advice to anyone who has fluttering is to live with it and do not get surgery to treat tensor tympani myoclonus unless it is a severe case and effects your sleeping or concerntration, like myself, especially sleep for which it also resulted in insomnia, anxiety and depression.....!
 
You will also be very sensitive to loud sound so any sudden noise even when you sneeze, it goes straight through your head, if you get me!!! - Not a great sensation, hence increases subjective or ringing tinnitus. So if you are going for surgery then do so and proceed with caution.
 
I do believe that it is stress related and I know that for a fact because having had a minor car accident last month, which resulted in a new bumper, headlight, radiator grill and fog light resulted in more frequent muscle twitching and ear fluttering, hence blepharospasm (eyelid twitches). So there is not doubt that stress makes it worse.
 
TAKE NOTE
Thanks
 
-Sean



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LynnMcLaren

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Reply with quote  #47 
Hi Sean, ((( Smiles )))

Thats probably good advice as......
I had alot of symptoms with my ears in the spasmodic zone...
And it was really bad at one time but did get better for me...
I'd call it a year though even after that....
According to some very old posts it must not have gone away in one day.. 
For a short time frame after a year I mentioned it still going away..
On and off like a slight touch, a few months..
But got better for me, it did...
So the possiblity allways exists for some people that it could...
But at my worst of.. Liveing with it and reading about the surgery
which has helped some people improve with it or get better on certain
symptoms.. It would have been tempting to do at my worst of...
But I'm glad I didn't do it for that symptom....
Or the other DA DA Da Da Da or popping either...
Noises or sensation within the ears back then...
But I do have this left over rumbling/booming...
thing and crackling...
But for me..
The risks would be worse then whatever the results may be..
As I had severe H at one time.. Bad tinnitus too...
And I don't want that back....
But yes.. It's not bad enough for me to undergo any risks for me...
At this time...
My thinking is in the line of what you posted...
Things could be worse for me...
There much better now.....((( Smiles ))))


My advice to anyone who has fluttering is to live with it and do not get surgery to treat tensor tympani myoclonus unless it is a severe case and effects your sleeping or concerntration, like myself, especially sleep for which it also resulted in insomnia, anxiety and depression.....!         

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Lynn
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Supersmooth

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Reply with quote  #48 

Hi Chris

I am going to the London RNTNE hospital tomorrow to have a check up/hearing test to make sure the right ear has healed before considering doing the left, when we will be debating whether the other ear should be done seeing as it has now been 4 months...I shall let you know, i still get ear problems but they are more tolerable, and I am still very sensitive to loud sound so even when I sneeze, it goes straight through my head if you get me. I have also notice a lot of excessive ear wax in the operated right ear.

My advice to anyone who has not had surgery to treat middle ear myoclonus is not to have it unless it is an extreme condition, like me, where it affected my sleep, concentration, life etc. It is a frightful ordeal to go through and there are side effects. I still get the persistent ringing especially after I sneeze but this is more tolerable then a butterfly being stuck in my ears "middle ear myoclonus."

Sometimes when I gargle or scratch the right side of my tongue with teeth i can feel my something in my eardrum moving, it feels like an ant. But I got my taste back after two weeks and things are much better now that surgery as done, and although I still get minor thumps/booms of middle ear muscles, however, they do not affect my sleeping like prior to the operation, when muscles were twitching like old fun similar to my eyelids "blepharospasm."

I guess the positive thing to think, even though it is still so distressing, is that it is a) Not life threatening, B). Not painful, D). It's not a disease or virus that can be spread!

Chris, if it is affecting your sleep then try surgery, but like i said do proceed with caution. Like I said, I had it in both ears, hence why it was a severe condition that needed to be dealt with; if i just had it in one ear then I would be able to cope but would still be frustrated. Do you just have it in one ear?

How are your problems?

All the best & will update Saturday!

Sean

PS - Stressful situations make it worse, do you know what started your ear poroblems?


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Sean
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LynnMcLaren

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Posts: 7,990
Reply with quote  #49 
Hi Sean, ((( Smiles )))

I'm not the only one that had theses movement twitching clamping
outer sound reactive ear symptoms that it got better for over time..
I was reading the Crackling on distortion at high volumes thread from
10-18-04.. And Astrid and Prexy and I were haveing a discussion on
this subject and she said that like Lynn.. there are others that have
had theses same problems/symptoms that have improved from them overtime.. And..

Thats hopefull for others to know out there that it can get better overtime but I wonder what the difference is???
I'm trying to figure that out what that is?? It seems that not everyone
that has theses type's or like symptoms have what I call classic hyperacusis
disorder...
thats because of the way hyperacusis is describe in certain medical books....

Different from what we/others with this have described on the
board in the past.. Thats why I call it that.. To define it from acute hearing
or regular sound sensitivity though could a person with regular sound sensitivity with their tinnitus ect..

Have some componet that could lead to hyperacusis as we define it under the right circumstances the potential being there.. I just..
Why did certain people as Prexy mentioned like us..
Get better over time and others have not like in a year or two ect...
Ones that did not undergo any surgery but had it bad but it got better,
Why???
Maybe there's a clue there somewhere and I'm going to look into
it when I can do so... but I do know one thing.. Like you wrote.
As you wrote above... But first..
I need to understand the difference between just the fluttering...
and the severe kind that is more then just fluttering but is clamping 
sqeezing movement that is highly reactive to other sounds..
Expecailly metalic like sounds and water ect...
That can happen so bad that just turning a doorknob wrong...
Can be painfull and felt expirenced inside ones ears...
And I had this with a loudness disorder as well..
Sounds were heared super loud but it's..   
Like Astrid talks about I know it.. But why did we get better.....
And she did not ???? What makes the difference???

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Lynn
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LynnMcLaren

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Posts: 7,990
Reply with quote  #50 
Hi Sean, ((( Smiles )))

I still have the thumps and booms and rumbling...
But it's not as bad or even close too as how I expirenced it as haveing
the sound reactive spasming I had...
It's like night and day to me...

It's just interesting how you bring that up....
Like it's a root of something below the other symptoms or related in
some way.. Connected.. Like I have left over something....
In that department and it happens no matter how I feel about it..
I've had that symptom of along time now.. It just is for me.. 

Quote:

although I still get minor thumps/booms of middle ear muscles, however, they do not affect my sleeping like prior to the operation, when muscles were twitching like old fun similar to my eyelids "blepharospasm."


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Lynn
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