Diagnosed With Otosclerosis And Want More Information!

I'm scared. I am 33 and after being on antibotics for 4 of the last 6 months for sinus infection/ear infection, I finally asked to see an ENT. Yesterday, I had a CT scan of my head which came back completely normal. There was no fluid in my ears or sinuses. I mentioned the stuffy and ringing ear and he said we would look at that. He inspected my ear and mentioned my eardrum looked beat up. I have had sooo many ear infections growing up that I associated this to that. My left eardrum has ruptured twice and I've had tubes in my ears twice as a child. He sent me to get a hearing test and my right ear is good but not great but my left ear is only at about 50%. He then decided that since I was in the office he would cut a slit in my eardrum to make sure there was no fluid in there..I prayed there was and that a tube would fix it. There was no fluid. To me, I only noticed all my symptoms within the last few wks when I supposedly had this ear infection: stuffy ear, random pain in ear, ringing noise (really weird background noise), nausea, and loss of balance. The only time I feel half normal is when I'm laying down. So, due to being "sick" I rested alot. The doctor diagnosed me with otosclerosis. He says he gets about 2-4 people in his office a year with it. Next week, I go back to him to make sure my eardrum is healed and talk more about where I would have to go to see a specialist. I live in North Dakota-probably 9-10 hours from the nearest specialist. He mentioned hearing aid and surgery. The more I read the more confused I get...It's supposedly hereditary when no one in my family has had this. Hearing aids help now but as the hearing loss progresses may not help in the future. I'm scared because this generally ends up happening to both ears. I feel very alone and scared. Is the pain I feel in that ear nomal? Is the surgery worth it? Will the ringing stop? I have three young kids and can hardly hear them...Can anyone relate to this? Any input? Thanks for any and all input you have as this is rare and no one here understands what I'm going through!
kjanzd kjanzd
5 Responses May 12, 2012

Yes I can understand this!! I have moderate to severe hearing loss in both ears as a result of Otosclerosis. I was diagnosed just this year and have been wearing hearing aids ever since. They work great. Too scared to do the surgery because of all the horror stories I have read about. I hear noises, tinnitus, constantly but when I wear my hearing aids it is much less. Without them, I hear noises, my baby crying when she isnt, and all sorts of other things. I thought I was going crazy before I found out what I had. I have noticed just over the past few months my hearing has gotten so bad that without my hearing aids I can't even hear my kids little voices when they are standing directly in front of me. I have a great aunt and an uncle who both went completely deaf from Otosclerosis so the prognosis doesn't look too promising for me. I am frustrated and feel like nobody understands what it is like to wake up one day and not be able to hear practically anything. It happened overnight for me. Anyway, I get what you all are going through because I am going through it too. God bless.

I'm with you kjanzd. I finally went to an ENT for the same stuffy, painful, why is everyone talking so freaking quietly experience. Sometimes I think I hear faint music and THERE ISN'T ANY!!! It's so frustrating. My family thinks I'm being dramatic, but this stuff is SCARY. My doctor talked so fast all I caught were progressive and surgery. Then later I found out it's usually bilateral. Mine is really only messing with my left ear now, but look what I have to look forward to! To top it all off my career is as an interpreter for the deaf. If I can't hear it's going to be tough to find an interpreting or transliterating gig. It's possible, but it's rare. I am so mad and sad and scared.

Don't be scared! This is not a new disease at all! The surgeons could do it in their sleep. I have had one surgery on one ear.

I had the stapedectomy operation last Monday 14th May but due to the facial nerve obstructing visability to the stapes bone the surgeon had to abandon the procedure, it was too risky to carry on. He spoke to me later that day and said it was very rare to have the facial nerve where mine is in the right ear and we would discuss other options on Monday 21st when he removes the packing from my ear. Since last Monday I have been doing a bit of research and think possibly the baha (bone anchored hearing aids) might be a better long term option for otosclerosis as it's a progressive disease. All the best whatever you decide to do!!

You're not alone, I'm very scared as well. It's such a new disease. I also have the pain, stuffy and constient humming noise. It's very annoying but I've sorta become used to it over the years. I am 24 and I'm having the surgery in 2 weeks. It has mainly effected my right ear but has already started in the left as well. I do believe that if you have the disease, your children have a 50% chance of getting it as well. My dad has it and of all 3 of us kids, I'm the only one who got it. I'm always here if you want to talk or discuss symptoms. Talking with someone who has the same thing always helped me :)