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kat73

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Reply with quote  #1 

Hi again!

 

I want to ask the ones that had surgery because of Myoclonus and/or TTS.

I mostely interested too hear from you that have tinnitus and done this surgery. Did anything happens with your t?.

 

I sure don´t want to make my t worse its already hard to deal with but so are the symtoms i suffer from now that might be TTS or Myoclonus.

 

//Kat.


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I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
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lib

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Reply with quote  #2 

hi kat, yes i had/have t....its no worse and i think it is better since the surgery.

lib

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CarrieB

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Reply with quote  #3 
Hi all,

I am scheduled to have my stapedial/tensor tympani muscles cut in a couple of weeks. I was wondering --for the people who have had the surgery--if you had any side effects from the surgery, any changes in your hearing, etc. I am having the surgery only on one ear and was wondering if things will sound louder on the one side when I'm around just everyday noise. I know that loud sounds might irritate my ear but I was wondering if the surgery will distort my hearing and/or make everyday noises sound different/louder.

Thanks for reading this!
Carrie
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lib

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carrie...feel free to look at my posts, lots there for you to read.

the changes are minimal, loud loud will bother you, like slamming a big metaldoor, but its not a daily thing, also my voice is loud on my right side when i yell loud or try to talk loud over noise, this i am already used to. its really worth the side effects to get rid of the rest, and you get used to it. a few people i know have had no side effects, in fact more do not than do.

where will you have surgery? who will be doing it?

please keep everyone posted and good luck!

lib

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kat73

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To CarrieB:

Where are you going to do the cuttings, in what state i mean?.

And which sympoms do u suffer from and  do u manage to find an diagnose?

 

 

//Kat

 


__________________
I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
0
CarrieB

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Reply with quote  #6 
Hi all,

I have had myoclonus for ten years now. I hear fluttering/crackling in my right ear when I am around louder noises (shower, hair dryer, city bus). About seven years ago I got the prognosis from a doctor in Iowa City, IA. I decided not to go through with the surgery because I decided to just live with it. Several years later, my ear is more sensitive but still manageable. Nonetheless, I decided to investigate my options again. I saw a doctor at the University of Michigan in Ann Arbor. Based on my description of my symptoms, he thinks it is myoclonus (just like the other doctor in Iowa City thought).

So I am scheduled for surgery in three weeks but (unsurprisingly) I am having second thoughts. I know the noises will never go away (that is why I want the surgery). But I am worried about the side effects. I have no ringing my ears and I am worried that after my surgery that I will. Also I am worried about having everyday noises sounding distorted in my ears. So we will see if I end up going through with the surgery or not. If anyone has some encouraging words for me, I would greatly appreciate it. Carrie
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kat73

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Reply with quote  #7 

Hi again!

 

Well there´s my fear, as much as i suffer from all the mysteriuos symptoms in my ears right now...Echoes, spasm, pain and hearinglosses...u name it...

I am so scared letting someone do anything with my ears because of the tinnitus that i already got.

 

I sure dont want it to get worse or damage the ears more someway...but as i can see the side effects seems pretty small...

 

My doctors just tell me to get an appointment with som phsychics-specialists (cant find the right word, hopefully u understand anyway ;-) )and that this is caused by stress, but since found this site i am sure theyre all wrong...But the stress and anxiety is sure making all worse, that i clever enough to know but how to rleax when your own ears playing this terrible tricks on me...I guess all the doctors finds me annoying and just making all up...But i dont...this is real...and i think of myself as a normal person...but all this starts too get too me...Soon im sure going crazy

 

How do u all manage?!.


__________________
I´m 32 y old turning 33 this summer.Mother of twins, Nikki-Lee & Norton they´re 4,5 y old.
I suffer from severe tinnitus and hyperacusis since July 2002 after an rockconcert.
In october 2005 i got an otitis in both ears & more trouble came after this. I get no answers from the ENT doctors so i had too search the web for my own diagnose.
I believe that i also have the Tensor tympani Syndrome, myoclonus & Eustachian Tube Dysf.
0
CarrieB

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Reply with quote  #8 
I just wanted to post this response from the old discussion board. I don't know who Todd is but it sounded like the surgery didn't work for him. I hope he finds this discussion board so I can hear more his experiences.

Author: Todd (---.johnmorrell.com)
Date:   03-13-06 15:21

I have had the surgery to sever both the stapedial and tensor tympani muscles and still suffer from the thumping noise in my right ear. Any idea what to do next? This is something that I cannot continue to tolerate.
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CarrieB

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Reply with quote  #9 
Hi Kat,

To help prevent the ear twitch/fluttering noises, I often wear cotton balls. The noise I hear in my right ear is triggered by noise so if I can make the external noise quieter (e.g., taking a shower, blow drying my hair, riding in a car), then it usually prevents the onset of the sounds I hear. Sometimes I have to wear ear plugs because the cotton balls aren't enough. and I usually have to wear them in both ears even though I only have problems with my right ear. If I only wear ear protection in one ear, I sometimes still hear the fluttering noises.

I also usually try to live a fairly quiet life, which prevents the onset of the noises in the first place.

I have been using cotton balls/ear plugs for the last ten years. I bet I'll have the best hearing when I am older if I continue to use them.

I hope this helps.
Carrie
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lib

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Reply with quote  #10 

carrie..

i have talked to todd, i still have the thumping he has, this is prob the e tube muscle spasming. i had the surgery and the fluttering and reaction from outside noise is gone in my right ear where i cut both tendons....i am thankful and grateful i had this surgery....i highly recommend it!

lib

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LynnMcLaren

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Reply with quote  #11 

Hi Lib, ((( Smiles ))))

 

Thats my dilemma as well. Like what Tod has.

 

The muscle spasming to soft sounds like upon dishes, and silverware, metal touching metal, turning of pages ect.

 

On soft sounds.. That immediate felt reaction to outer sounds went away for me.

 

And also.. The one that felt like my ears where being physically assualted kicked in on louder non softer sounds.. went away for me as well.

 

I'm not sure if they where one and the same and just reacted different upon the sound level themselves..  Or two separate kinds.. Like the TTS and the Stapedial one..

 

But when I first came on the board.. My first big concern was that I took that acoustical reflex test and it showed no response.

 

And that was hard for me to do but.. at that time I could take or handle more one of thoses kind of tests as it was mostly progressive tinnitus for me back then..

 

I had troubles back then but nothing like what was in store for me in the future..

 

But everything has got better for me except.. The 24/7 rumbling inside mostly my left ear. My right ear is sounding pretty good inside except.

 

With yawing or burping or sometimes swallowing... an air passage strain of some kind that sets it off.

 

It's  the roaring thundering booming thing that can be mostly heared audible out loud in my left ear in reaction.. yet. It can be heared equally at times in both my right ear too... just as loud..  Equal

 

Sometimes it just my left that does the loudest thing.. But sometimes it's both and I guess it depends on the strain of the air passing I don't know..

 

Like it hits something inside there.. Not sure..

 

But it's not heard in my throat. I hear it loud like it's in my ears but doesn't mean it can't be thru that whole area..

 

But then.. I can make my ears do this on rare occasions with my voice. As my voice is within my body and this is all internal. It has to do with internal sounds only..

 

Thats how it seems to go...

 

So now.. I'm thinking.. Maybe this.. Has nothing to do with thoses other ears spasms to sounds..  And maybe this thing I have now.

 

Has nothing to do with hyperacusis or anything that might have helped cause my hyperacusis because I don't think this symptom makes me sensitive to sounds in anyway..

 

Thou my left ear seems more so.. But yet.. It can handle lots of sounds like it's not hyperacustic.. Thou I wouldn't put the phone up to it and listen thru it.

 

I remember how it sounded in there when I did that long ago.. Like a hallow tunnel. Listening thru a tunnel to the other end with echoing involved. At a lower volume thou same hearing..

 

Maybe an E-Tube tunnel I don't know...

 

I wasen't going to take anymore medications that would effect my E- tube as my ears reacted and screamed with crickets back then when I did...

 

So I'm not sure how it would sound in there now.. But I think it has to do with the rumbling in there or the thundering booming thing going on.. 

 

But I'm not sure where it fits in.. And the internal rumbling.. Does that make my ears more vunerable to ever getting my hyperacusis symptoms back again ???

 

What does this mean for me. I'm not sure.. My hyperacusis is doing great and I tested my ears big time at Chuck E Cheese..

 

So what does this mean for me in the future..I've been reading alot about E-Tubes lately and a person can have hearing problems caused by their E-Tubes..   

 

Hearing loss.. Deafness.. Thats what it seems could happen but I'm not sure in my situation.. I got to do more reading and research when my other computer is up and running..

 

I just don't know what this problem means for me in the future.. If anything...

 

And I still have crackling in both ears too. I mean I had terrible hyperacusis and I don't want to go back to that. Or terrible reactive tinnitus either.

 

I feel like I'm stuck in a catch 22 situation.. So.. Whats next.. To read all I can on what I can try to do and if all fails.. Just live with it..

 

It's so much better then terrible hyperacusis or terrible tinnitus anyday  .. Yet...

 

I wonder why this is happening at all. And what this could mean.. for me in the long run...

 

I wonder how Astrids is doing with her ear muscles..  And if she has this internal thing too and if the other ear spasms have gone away for her..

 

I really hope they have for her as they have went away when my hyperacusis loudness disorder got better for me..

 

Theses symptoms are just so bizarre to have happening in ones ears..

 

 

 

 

 

 


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Take Care

Lynn
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