Otosclerosis or Juvenile Otosclerosis anyone?

[melissaamd1]

I'm 37 with severe to profound hearing loss in left ear, profound loss in right ear. When is was 17 and 18, I had Stapedectomy surgery in ear ear.( One each year.) I was obviously diagnosed with juvenile otosclerosis. I had already shown some mixed hearing loss (nerve damage) had begun. I suffered chronic ear infections, and had "tubes" put in my eardrums in elementary school, before they figured my hearing problem was from otosclerosis, not fluid. My eardrums are severly scarred. I've heard doctors say they've never seen anything this bad before, or that my eardrums are so scarred, they look like mosaic tile( haven't seen them, so I couldn't say!) My middle ear is meesed up from Stapedectomies, my nerves are shot from straining thru all this stuff, so there you have it, the mixed/ sensorineural hearing loss. I have never known another or even around my age who has had juv.otosclerosis, neither one who has reached the severe- profound mixed loss range. I have been advised to look into cochlear implants. My ENT who did my Stapes surgeries was even shocked that I was at this level by just 37 years old. I recently got new Phonak Naida S III UP and I love how I can hear with them. I had an appointment with a C.I. Surgeon on the 29th at Mt. Sinai, but I cancelled it because I can hear so well with my new aids, but with my loss, I've been told it won't last forever. Has anyone on here had Otosclerosis and nerve damaged cause from it? What did you do to help yourself? Thanks!

 

[sallylou]

I'm pretty sure I have otosclerosis based on my bone problems and audiogram. I have a lot of other medical issues.
Stapes surgery has been disfavored for a long time. Improvement is generally temporary. Some people are ok with that.
Welcome to AD! *waves*

 

[KellyC]

Hello there! I was recently diagnosed with otosclerosis at the age of 32. So far, I have just a mild loss, tinnitus, balance, and infrequent vertigo. I have read that otosclerosis can cause profound, sensorineural loss if chemical by-products of the decalcification/recalcification damage the nerves.

I'm glad the hearing aid is working out for you. I am just (very slowly) starting to learn ASL for when my hearing loss becomes more problematic.

 

[wormbutt]

Hi

I'm 37 with severe to profound hearing loss in left ear, profound loss in right ear. When is was 17 and 18, I had Stapedectomy surgery in ear ear.( One each year.) I was obviously diagnosed with juvenile otosclerosis. ..... I have never known another or even around my age who has had juv.otosclerosis... Has anyone on here had Otosclerosis and nerve damaged cause from it? What did you do to help yourself? Thanks!

You may have just met someone -me! Your story sounds eerily similar to mine. I just turned 43 and I also have hearing loss/deafness due to juvenile otosclerosis. My story: Hearing loss as a child also contributed to multiple severe infections with drum scarring. Bilateral stapedectomies at 16 and 17 after another doc did exploratory surgery and found the otosclerosis. Stapedectomy failure in my 30s, complete profound sensorinerual deafness in left ear, hearing impairment in right. I have a BAHA on left side and possibly another on right in the spring.

One thing that my new doc told me that the other doc who did the stapedectomies never mentioned is that a stapedectomy recipient is at a much higher risk of sudden deafness and deafness from illness. My left side deafness was caused by a bad bout of pneumonia and ear infection which took 5 rounds of antibiotics to clear up. One day I woke up fine, but suddenly around noon I felt like a brick wall had fallen on me and by the end of the day I had to crawl up the stairs cuz I couldn't walk, and couldn't call husband at work because I couldn't hear on the phone. By the following morning I was in the ER with pneumonia and vertigo.

So yeah, I started out with conductive loss due to juvie otosclerosis then stapedectomy failure, but have finished my hearing life with major nerve damage.

I've been warned to get to a doc or ER immediately if I even feel the smallest twinge in my right ear because if I lose the hearing in that one, I'm screwed. The BAHA will not work without one ear that only has conductive loss.

The way my BAHA works is it takes the sounds on the left side and transfers them to my right ear. I now can hear all the noises around me, but I do not have directional hearing. I can now tell when someone is talking to me on the left, but I still have to scan 360 deg to see where the person is.

 

[melissaamd1]

Wormbut: Thank you for responding to me! I have never met anyone that has ever experienced something so similar, almost identical to me! I have to get ready for work now, but will write more later! Thanks so much!

 

[messymama]

I have otosclerosys, was diagnosed at 19, but it's mild... Only one ear and about 50 db loss at the worst frequencies (bass). I'm pretty sure I had it as a child too, since I often could'n hear well in many situations, but I often had fluid so they never consider the possibility and I had adenoidectomy instead :roll: which obviously didn't make any difference for my hearing. As far as I remember, I always heard like I do now, only slightly better before pregnancies.
I also have a very little sensorineural loss now, but really not enough at the moment to consider any accomodation. I know it will eventually get worse, and I'm not a big fan of surgery, but... I'm alreday learning Sign language for my deaf kid, so I feel like I'm already preparing my own parachute

I want to add. Melissa, don't be so sure it will get worse. When I was younger, doctors told me I shouldn't have pregnancies or breastfeed my kids or I would go stone deaf - since they never saw otosclerosis at such a young age and blah blah blah. I had two children and I've been breastfeeding for the last 6 years, and I lost only about 10 db since I was 19 (I'm 34 now). They just don't know. So I would say... Use Naidas since they're working, learn some sign, and you'll think about CI when/if things get worse. It's just not something to take for granted, that you'll loose more, I think.