Help Understanding Otosclerosis Diagnosis!

I recently went to an ear specialist and he thinks I have otosclerosis. The symptoms I have been having for about a month and a half to 2 months are full feeling in the ears, blocked, pressure, crackeling sound when i yawn or swallow. They just feel so uncomfortable and I wish I could get my normal clear hearing back. I've also experienced a fluid like sensation in the ears.I do not have much hearing loss as of now per the hearing test, but I wondered if anyone else has had these symptoms or what symptoms besides a loss of hearing? Do any of theses symptoms sound familiar to anyone? I really would be interested to know what others are experiencing early on in this awful disease! I can not yet get surgery done since its so early on.Please help!  
fisherc fisherc
26-30, F
11 Responses May 19, 2007

I've had it my whole life. My grandma, mother, sister, son and niece all have it. the ear I can still hear in(right) is like yours, it oozes out of the middle ear, and the stuff itches and burns and will get cause infection of outer ear if i don't take care of it by swabbing it out with grain alcohol on a q-tip. the other ear feels very full and pressurized. it can really hurt if it gets cold. it only oozes a very small amount. the last 10 years i have been unable to get the right one wet at all or it infects and hurts like blazes. i'm 65 years old. i have other bigger health problems that i was lead to believe might be helped by medical cannabis. so i went to California and saw doctor Courtney because he advocated juicing it raw and there was no THC in it that way and was very healing. unless you grow your own it is almost impossible to get like that. i got a little and it is true, the healing is miraculous. so now i am going to get a place so i can grow a little for my use. but for now i just eat a little everyday of what i can get at the dispensary. it burns at the back of the throat and CLEARS UP MY EARS and i can swim again!! the pressure is relieved too. the tinnitus is also decreased. Dr Courtney has a web site cannabisinternational dot org

I have this diagnosis too, and have similiar issues. I am scared too. There is not enough info out about it. I feel pain in my ear, have lost over half of my hearing iny left ear and cannot get a good plan going from my doctors. Since I have pain, which apperently I am not supposed to have.. I mow need a CT scan because the doc is checking for non cancerous tumors.I am scared beyond words.I do understand and wonder if people have pain, etc.

I'm scared. 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. 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, do to being "sick" I rested alot. The doctor diagnose 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 along 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!

It started for me around 6 years ago, the surgeon at the time told me that I would have trouble with my other ear in the future & to consider surgery after having children as pregnancy can increase the hearing loss. I now have a 5 month old baby boy & have just had a second hearing aid fitted. The surgeon was spot on with everything he said, I didn't expect the hearing loss to happen so quickly but that's just the way it is.. I don't think I want to have the surgery as I could lose the little hearing I do actually have...

anyone who has had a surgery or any other treatment for this please write about the experience post treatment.

I am lost. My ears hurt sometimes and are full. I also get that crackling sound in my right ear. I did recover from a bad ear infection and my ears have not been the same since. I was also diagnosed with a perferated ear drum. But now I am suppose to be ok. My MRI showed nothing. Still I continue to feel like I can't hear even though I am and to endure the so callled imaginary pain. Just wondering if anyone can give me advice. Since otosclerosis runs rampant in my family.

I've noticed that most people have a feeling of their ears being full. My Internist gave me antibiotics and guess what it did nothing. Went to an ENT, I was diagnosed with Otosclerosis, but the full feeling my ENT says is TMJ. I don't believe this is true. I'm 57, to have hearing loss , tintinus, some balance problems all at the same time .... I don't think TMJ would come into the picture and never been diagnosed with TMJ, plus I wear a mouth piece to protect teeth from grinding already. Do most of you that have Otosclerosis have a feeling of fullness in the ear and on occasion sharp pain? I feel like my symptoms is being shrugged off...Don't want to spend more money on something that really isn't a part of otosclerosis.

I was just recently diagnosed with otosclerosis by and ENT. I was experiencing a full feeling in my right ear along with a whoosh sound when I bent over or turned my head hard to the left. But more concerning than that I could hear a pounding noise in my ear (later found out I'm hearing my heart beat). I knew I had an ear infection b/c of the fluid feeling in my ears and the noises. This was confirmed by my family doctor who assured me I had a bad ear infection. He then placed me on a strong antibiotic. After I finished the medication I needed a second round, the infection had not cleared. After the second round I asked the doctor to refer me to a local ENT. When I went in to see the ENT he said, to my disbelief, I did NOT have an ear infection!! That infact after having an in house hearing test with the audiologist that I had some hearing loss and my hearing was turning inward and that was why I was hearing my heartbeat in my ear, along with the fullness, etc. that goes along with otosclerosis. He sent me to have an MRA done (same as MRI only it's focused on the head) to make sure I did not have an anuerism or something really bad. Turns out the MRA came back fine - which is good but means more than likely that I suffer from Otosclerosis. <br />
I'm 28 years old and really don't want to have to think about hearing loss at such a young age.<br />
Your symptoms sound so similar to mine. I had never really thought about the cracking noise until you mentioned it. I think I just assumed everyone experiences that. I'm going to a specialist in Augusta, GA who is just an ear doctor (not sure what you call those; don't think it's an audiologist) anyway, he is supposed to be really great. I really don't want surgery if I can avoid it. It seems a little sureal to have hearing loss at such a young age. <br />
The most devastating thing for me is that no one can say how much hearing loss I'll have or how long it will decrease for. It must be different with every person.

I was diagnosed with otosclerosis last year and given hearing aids. But six years ago I had the same symptoms you had - the crackling and rushing water sound in the ears. Really annoying, especially at night time when I went to bed. For me, the crackling stopped after about a year, thank god, then it mysteriously disappeared. Now I have tinitus which is bearable and I can have stapes surgery after I have children. IN the meantime, hearing aids aren't so bad. I wish I could have surgery now though, because I have to use a special stethoscope - one with a hearing aid attatched - for nursing and its really awkuade.

Yes I do.

Yes, your symptoms are like what I had before my diagnosis. I also have fleeting ear pain like a mild ear ache now and then. They say that does not go with it, but I know too many people with it who confirm that that can be a symptoms. I posted my story. Hope it does not scare people too much, but I do want them to consider the alternatives.

I have also just been diagnosed with this disease, and am very nervous about the surgery. I have been experiencing the symptoms you speak of, as well as pronounced hearing loss in one ear. I didn't know the disease could cause those symptoms - I hope that the surgery will correct those for me as well. My ears fell awful most of the time, and I have had this problem for almost 10 years now and was just told what it was. I kept going to the doctor with the pain and pressure and hearing loss, and they just kept giving me antibiotics. I hope it doesn't happen in my other ear as bad as it is in the right one :(