Ok, it started months ago where my right ear felt like it was closing off when I was listening to music.. it became "full".
Now, I am at the point where ANY loud noises make me cringe. My ears hurt all the time, and after a whole day of being exposed to noises, I come home and if I am watching TV I have to keep the volume low.. as my ears "click" to any noises above a certain level. It sounds like a typewriter, or somebody doing morse code in my head. It sucks.

I went to a concert last night (we had bought the tickets 4 months ago, and the concert kept getting pushed back. It was a gift, I had to go...) I prepared and purchasing "musican earplugs", that lets you hear the music but lowers the decibale rate.

My left ear sounded like a STATIC radio and my right ear, the one that usually becomes "full" when loud noise is present, didn't do that... but it hurt alot.

Once you have reached this level.. is there anyway back? If it's TMJ, and they treat the TMJ, will my ears go back to normal?

Can you have hearing "damage" without it affecting your hearing? I HEAR fine.. perfectly actually, but when I take sounds in I get all of this crap... is there any way BACK to normal?

61 views, and not one response?

Nobody has the same symptoms as me?

Don't worry about not getting a reply yet - I've had over 400 views of my situation with otosclerosis and although one person has replied (for which I am truly grateful - thanks, Zip!) who had also had a stapedectomy, I have yet to find anyone who has been give sodium fluoride treatment for the condition.

I still keep hoping that someone will view it who can tell me how they got on...

You may just find that someone posts a new topic which is the similar to your own experience.

Hang in there!
Caz

Ok, it started months ago where my right ear felt like it was closing off when I was listening to music.. it became "full".
Now, I am at the point where ANY loud noises make me cringe. My ears hurt all the time, and after a whole day of being exposed to noises, I come home and if I am watching TV I have to keep the volume low.. as my ears "click" to any noises above a certain level. It sounds like a typewriter, or somebody doing morse code in my head. It sucks.

I went to a concert last night (we had bought the tickets 4 months ago, and the concert kept getting pushed back. It was a gift, I had to go...) I prepared and purchasing "musican earplugs", that lets you hear the music but lowers the decibale rate.

My left ear sounded like a STATIC radio and my right ear, the one that usually becomes "full" when loud noise is present, didn't do that... but it hurt alot.

Once you have reached this level.. is there anyway back? If it's TMJ, and they treat the TMJ, will my ears go back to normal?

Can you have hearing "damage" without it affecting your hearing? I HEAR fine.. perfectly actually, but when I take sounds in I get all of this crap... is there any way BACK to normal?

Hi.ive just read your story. Im not sure if your clicking is the same as mine, but mine will start or get worse by the sounds of electric gadgets...like toothbrush shaver, hoover,lawnmower, also some vehicle engines, the flushing of a toilet, the radio, tv, music and even the kettle boiling. So as you can see my life can be hell. However it does go away sometimes and my life is wonderful. The docs say ive got a eustachian Tube Dysfunction and nothing can be done about it However i have found that by using a salt water solution in my ear and sprayed up the nose it not only helps slowly get rid of the noise but sometimes keeps it away for either days or even months.Nine being the longest and it was like i was reborn. i loved having my life back. Ive got it right now and last week it was totally constant and really bad, but it has improved with lots of spraying, so hopefully it will go soon. im not sure if this will help you but if you think it might , let me know and i will tewll you where to get the salt solution ok.

Did you investigate Patulous Eustachian Tube?
I have it and popping, clicking of my ears are some symptoms.
Sometime, I happen also to hear the sound of a static radio TOGETHER with the other sounds, mainly when I listen to high volume music.

Bye
Remmy.

hi remmy and all,
i am not sure if twiztid still comes to this board, but i have the same sx as he and you all....or i had them i should say.
these symptoms are middle ear myoclonus, or of the e tube.
p e t is not related to outside noise or spasms. so you may want to look into this as i was first thought to have p e t but after much investigation dr poe found that i have myoclonus....a local dr then took over and i had these tendons cut. twizted was dxed with myoclonus as well.....
lib

Hi.

I read about myoclonus, but in my case it is almost 100% PET.
STATIC radio sound is not my main complaint; I have other classical PET symtpoms that all together make the diagnosis sure.

Dr. Kujawski (a colleague of Dr. Poe in Geneve: they both study PET and perform surgical tubal reconstruction) visited me and gave me the diagnosis. Also, he told me that strange sounds may be heard by PET sufferers in some situation due to the fact that, when the tube is open, even slightly, the "tension" of the eardrum is reduced, so it flops with external sounds. So, you may hear STATIC sounds, or suffer from hyperacousy, or you may hear your drum beating while people talk, and so on.

Bye

Remmy.

hi remmy,
interesting.
i am a patient of dr poes. he told me outside sounds are not p e t related symptoms. p e t is hearing your breathing and voice like a megaphone in your head. i had the implant done and the next morning it was clear mine was myoclonus. he also said myoclonus can cause p e t like symptoms.
these conditions are hard to diagnose. he then suggested to clip the tendons in the middle ear and this gave me much relief.
lib

Hi Lib.

Please, what do you mean when you say "i had the implant done"...

Concerning PET and external sounds, Dr. Kujawski told me, last time I went there (last 8th of December) that hyperacousy and "strange sounds" may be related to PET. More precisely he told me:
- In a normal ear, when the tube is correctly closed, the mucosal tissue of the middle ear absorbes internal gases, so that the internal pressure is slightly lower then external pressure. As a result, the eardrum gets "sucked in" and is in a physiological state of tension, which is good for hearing.
- When the tube does not work properly and opens too easy, the eardrum is not sucked in and is "floppy", so external sounds may be perceived in a strange manner, because the eardrum does not "oscillate" correctly.

Are you gonna try surgery with Dr. Poe?
Do you know of success case with PETR?
Do you know the rate of success?
Did Dr. Poe ever mention Dr. Kujawski?

Did you see Dr. Kujawski's site?

www.eustachian-tube.net

Thanks.

Bye

Remmy.

interesting, as poe said the oppisite. the drum is held by 2 tendons and a bone,not the etube so i cant see how it would get floppy....but who knows.
i had the alloderm implant, not cartlidge.
i do not know any answers to your other questions though, i dont know any statisics on the p e t surgery.
lib

Hi Lib.

Alloderm implant? How long ago? Did it solve your PET?
I understood that you did not have PET.

Concerning the drum: it is not the tube that tends the drum. The mechanism is tha following:
- When a tube close properly, our middle ear is virtually isolated from outside, so air cannot come in or go out. This is normal!!!
- In such a condition, the air that is inside the middle ear is absorbed by internal tissues. As a result, the pressure of the internal ear becomes lower than external pressure, so the drum is sucked in and its tension is increased (is an add-on effect respect to muscles and tendons).

Bye Remmy.

Hi Lib.

Alloderm implant? How long ago? Did it solve your PET?
I understood that you did not have PET.

Concerning the drum: it is not the tube that tends the drum. The mechanism is tha following:
- When a tube close properly, our middle ear is virtually isolated from outside, so air cannot come in or go out. This is normal!!!
- In such a condition, the air that is inside the middle ear is absorbed by internal tissues. As a result, the pressure of the internal ear becomes lower than external pressure, so the drum is sucked in and its tension is increased (is an add-on effect respect to muscles and tendons).

Bye Remmy.

aug 2004.....no it turns out i did not have p e t, i have myoclonus, dr poe knew because he could see the eardrum moving after surgery, and my etube was completly swollen shut.