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florian_89

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Posts: 33
Reply with quote  #1 
Hello All ,

I have hyperacusis on the left ear due to loud music. My right ear is so far ok.
 
It got into this condition when I was a music producer about 4 years ago.
I had a whole day with sound in front of speakers back then.
I suddenly felt a deep sharp pain in the left ear, it was a deep burning sensation. My ear somehow cramped. 
Thats how I got into this life-changing condition. 

Now I do TRT since more than  1 1/2 years. I wear the noisers on both ears. Almost daily 8 hours. It helps a little, put its not effective enough to have a normal life.

When I hear something loud, like a car or clinching dishes my left ear kind of gives me a stabbing pain. My ear then gets a burning sensation. The more noises I consume the more it burns. Each evening I feel totally exhausted from the burning pain. I need a lot of sleep so I can handle the next day.

Post OP simulation - (although its not the real situation after OP)
Last week I took a week of work, because I could not stand any noise anymore. I was in bed a few days, in silence.  I could start to hear my tinnitus clearly, which is sounds like peep-pepp-peep-peeep always a inconsistent sound.  
The sound is not constant and therefore very annoying.
I guess these are my damaged hair cells moving. (just a guess)

I got into another deep depression. So I thought I need this operation. 
I still want this operation. 


The question  that worries me is, what can go wrong?
What would be the worst case?


I though I kind of simulate this condition after the operation and put in a earplug in my left ear a whole week. . 
I had not much pain these days, that was good.
But the brain started to amplify this side. 
I was well aware of this.
The tinnitus got very loud and at night when I put the plug out, I could hear a hissing loud sound. 

I thought, if it will be like that I won't do the operation.

So now after one week I started with the noisers again, and the white noise now sounds like a vacuum cleaner. My brain is now amplifying that side a lot. Its very weird and frightening.


I am in contact with Sandy from Canada and Cozo from England who did the operation and are very glad and happy with the outcome 😉.

I try to find someone with similar conditions, and similar onsets of hyperacusis to somehow compare if this operation fits me.

Can anybody help me with this decision? 

I am afraid that, when I got operated my tinnitus gets very loud. Cozo said it will not amplify the tinnitus gain. Sandy never had tinnitus, she can't help me in this case.

Is there anybody who has a similar onset of hyperacusis like me and has tinnitus and is operated on one ear on the round and oval window and stapes?



Thank you.
Any comment is welcome.







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TallDude

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Posts: 119
Reply with quote  #2 
Hi,

I have T & H from noise trauma too (I was a amateur musician), at the time i also felt a pain like a needle is put in your ear. My T is very irregular too.
If i expose myself for longer periods to moderate sounds or loud sounds for a short period my T and H get worse and i have pain that can last for days or even 2 weeks. Next the T & H get better again. This has been going on for 9 months now. Currently i'm going trough a
tough period again because yesterday i went to the dentist for a half-year checkup and his spindle hurt my ears pretty bad. It felt like the spindle was in my ear.

An acoustic trauma might also cause damage to your tympanic muscles, not necessary haircells. This can cause T and H too. Actually my audiogram is not that bad.

Can you manipulate your T (by moving your chin to the front f.e.)?
Is your T louder when you yawn?
Does T change when you chew?
Do you have sometimes pain when you swallow?

Does your T and H get onset when you have to speak for longer periods (not necessary loud).

I didn't have the operation. I'm seeing a Dr. in february who does noise trauma's. So i'm still waiting for a clear diagnose before I will consider this operation.

best regards



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florian_89

Registered:
Posts: 33
Reply with quote  #3 
Hi TallDude,

thank you for your answer. I think you are a very similar case then myself.

I feel a constant pain in my ear, which almost never subsides. When I hear a lots of sounds, it starts to burn and this burning feeling lasts also a long time. I need to recover then in bed and with long sleep. Afterwards I need to gradually introduce myself to noises again. I tried the Noiser therapy, but its not helping much in my case. Its good to mask sounds and to calm a bit down, but it wont change that burning feeling in my ear.


Indeed its very possible that this acoustic trauma, where  I was mixing a track with a lot of high frequencies,  not only destroyed my hair cells, but also brought the malfunction of these muscles. 

My audiogram is also not that bad, I have no real noticeable hearing loss. 

to your questions:

Can you manipulate your T (by moving your chin to the front f.e.)?
No
Is your T louder when you yawn? 

No
Does T change when you chew?

No
Do you have sometimes pain when you swallow?

No
Does your T and H get onset when you have to speak for longer periods (not necessary loud).
No

so I have a few questions to you:

Does your ear hurt when you eat?
For me: no, i can even eat crunchy loud things, it feels a bit relaxing to move the jaw.

How does it feel when you get up in the morning and go to toilet and pee?
My left ear feels like contracting, when I pee into the water of the toilet, when I pee on the side of the toilet wall the ear is not doing that. Its the same when I hear a impacting sound. After the impact it gets loose again, but after a few impacts it starts to burn a lot more.
I can feel the difference to my right ear, which is not damaged.

How does it feel when you go up on altitude, for example in a lift of airplane?
My left ear poops way later then the right ear does. 



To the operation
I analysed the youtube video and the patients from Dr.Silverstein caputed in early 2018:

There was one patient  which was very interesting for me(
).


He had already hearing loss due to noise exposure in his life as a woodwork teacher. After an incident with an hammer near his ear, which is in my opinion similar as an acoustic shock, he got a lot of problems. He did the OP and also got better. He did not mention to have tinnitus. 

Other patients who have tinnitus, said the Tinnitus did not increase.



Maybe this operation can also compensate, due to packing the stapes, for a dysfunctional tensor tympani muscle by simply stopping the stapes movement? (I am just guessing)

Even if you get a diagnose from your doctor. Can you threat TTTS efficiently?
Sound therapy and counseling should help for this case, what I read.
If that is the case for me - I have tried that, and its not working for me.

So what is the real risk of doing the operation?

Is it "just" money?

Even if it does not work out, and it won't increase the T, its worth a shot for living a better life. And this is our ultimate goal.

All the other patients had somehow mixed causes:
noised induced hearing loss, acustic traumas, noise exposure over long time,
some had lasting ear pain, some not,  all had difficulties with sound.

Nobody can explain why it works. Some people are living proof that it worked for them.


I have to give it a try.

Kind regards
Florian


[grouphug]





0
TallDude

Registered:
Posts: 119
Reply with quote  #4 
hello florian,

to answer your questions:

Does your ear hurt when you eat?
No, it is just that my T becomes louder in sink with my shewing.

How does it feel when you get up in the morning and go to toilet and pee?
If i have a bad period i almost cannot stand any noises, like water etc. There were even times i had to whisper with my wife. It's not that it really hurts but it is uncomfortable. However the loud noise from the dentist spindle did really hurt.

How does it feel when you go up on altidude, for example in a lift of airplane?
I haven't been in a lift or plane since my escalation in march this year, so i cannot tell.

Let me tell you more what i'm experiencing:

My initial trauma was in 2004 (too loud stage monitor). I developed mild T and mild H a few weeks later. However i didn't know about H and what it really was, i just noticed i couldn't rehearse without earbuds. In the summer of 2017 i picked up playing music again, went to some concerts and experienced pain in my ears afterwards (even for days), eventually i also experienced this in restaurants.  Then my T and H escalated in march of this year. It was hell on earth. I got hissing in BOTH ears where since 2004 i only had mild and stable T in the left ear.

I always experienced these as two different T's, a stable T left and unstable hissing in both ears. This hissing comes with little extra sounds (i too thought these are from unstable haircells), sounds like crickets, little cracks or short high frequency wooshes. I call it a turbine with a broken bearing. When it's quit (in bed) i also experience this hissing as pulsatile (heartbeat).

In the evening i'm very tired and my unstable T is far more worse. In the morning i'm usually in pretty good condition. Dr. Norena (please see my other threads) told me my problem is probably caused by the tympanic muscles. So i was looking for muscles relaxers online (dr google) and came across GABA and ordered a free available supplement. And after two weeks my H was MUCH better and hissing T too. I even could crush a large plastic water bottle. Unfortunally i had some bad sideeffects (gynaecomastie en fluid retention) so my doctor adviced me to stop taking it. After a few days my T and H got worse again. The dentist visit made it even worse.

Because ths hissing T in both ears can almost go away i'm guessing this might even be objective T on top of my subjective T i have since 2004.

Maybe this operation can also compensate, due to packing the stapes, for a dysfunctional tensor tympani muscle by simply stopping its movement?

Yes, maybe, IF the tympani muscle is the problem and suppose they get sectioned as a last resort the packing of the stapes and round and oval window could compensate.

I think i read in a post that alcohol did bring you some relief, alcohol is a GABA-antogonist...
You could try GABA after consulting your doctor or even gabapentin.

An interesting recent article (october 2018):

https://www.ncbi.nlm.nih.gov/books/NBK519055/

best regards




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