I know it has been A LONG time since you posted this, I was wondering what came of everything. I was told today that I have otosclerosis, However, the research I have done says nothing about pain. and just asyou said, it starts in my ear down to my neck. I did hearing tests and the whole nine yards, right hear has hearing loss. no mucus, n fluid in ears, nothing in ear canals. This all started about 2 months ago when I had a realyy bad ear infrection, made 2 trips tot eh doctor, got on steroids and anitbiotics, and the the thrid vistit they sent me to the ENT. as they could no longer see fluid or any sign of infection. it still hurts, and I'm not sure if I should accept this DX. if you can, pleas email me if you read this to update me of your condition.
To the OP:
The doctor that stated that the only way to determine if you have otoschleroses is through exporatative surgery is correct. I would stay with him. I does not sound like he was in a rush wish is a positive thing.
There are many indicators of otoschlerosis, but nothing definite except for surgery.
For the second post.... your condition sounds a lot worse. You are beyond the "just discovered phase." But there is nothing to be scared of. Ultimatley you will never be clinically deaf.... not with todays technology. I aplologize if you feel that I am trivalizing you concerns. I am not, I am just letting you know that in the worse case scenerio, you will need to be constantly buying batteries to hear. But at least you will be hearing.
You both need good ENTs coupled with a good audiologist.
Yes, I was recently dx with otoschlerosis in my right ear. I lost my hearing about 20 year ago. Was told then it was a dead nerve, nothing could be done, not even hearing aid. Could have been caused by infection of the ear or loud noises. I excepted it and it has not been easy this past 20 years. Several months ago, i started getting a noise in my left ear; (sounds like an elec. bug zapper machine you use outside your home) I still have this noise, hard sleeping at night. Anyway, I went to an ent dr., dx in my right ear as otoschlerosis and he want to operate. Said I am loosing some hearing in my left ear as well, same dx. I am seeking a 2nd opionon soon. Have been researching and found out some things drs. do not tell you. Surgery wil not restore your hearing to normal levels, period. A very large % if not all, people with serious cases of oto eventually end up wearing hearing aids. The positive surgical effects usually dry up after about 7 years and you wil need to have the surgery again or buy hearing aids at that time. This is certainly scary and I don't know what to do.
I also need help. Let me know if you have discovered anymore info or did you have the surgery?