Otosclerosis - My Info and Questions

[KellyC]

Hello! I am 32/f and have mild hearing loss in my left ear due to otosclerosis, which I learned is abnormal bone growing over the stapes. It is a type of conductive hearing loss that is certain to progress and occurs in the second ear 85% of the time. Once the new, abnormal bone has completely covered the stapes, virtually no sound can be conducted to the inner ear.

I have noticed some of the same sensations in my right ear (congested feeling, popping - like from pressure changes on an airplane, crackling noises, occasional tinnitus) so I am almost sure that I will ultimately have a severe loss of hearing on both sides. I have some questions that I hope you can help me with:

1. Is anyone here severely HOH or profoundly deaf because of otosclerosis?
2. If so, do you have it in both ears, and did they start around the same time?
3. How quickly does it progress?
4. Do you have balance problems, too, and do they progress along with the hearing loss?
5. Should I tell my employer? Are there legal things I should do to cover myself in case they would terminate me because of my hearing changes?
6. What can I do to prepare myself? Is there anything?

I have already learned a few signs in ASL. I can introduce myself and fingerspell my name. I'm sure no one on here is impressed by that! I also learned a few crucial vocabulary words, like "hamburger" and "coffee." It is going to take me a long time to master ASL, so I figure I'll start in advance of needing it.

I also got a presciption for vestibular rehabilitation therapy because of my associated balance problems. I haven't made the first apointment yet.

This is all so overwhelming. Thanks in advance for any insight you can offer me.

 

[Beach girl]

I don't happen to have that problem, but I'm sure there are others here who might be able to chime in.

As for telling your employer, do you feel like you need any accommodations now, like an amplified telephone, for instance? If you work at a company large enough to have a dedicated Human Resources office, you might want to talk to someone there and see what they can do for you.

 

[KellyC]

I don't happen to have that problem, but I'm sure there are others here who might be able to chime in.

As for telling your employer, do you feel like you need any accommodations now, like an amplified telephone, for instance? If you work at a company large enough to have a dedicated Human Resources office, you might want to talk to someone there and see what they can do for you.

Thank you for answering. I work for a mid-size not-for-profit organization and we do have an HR department. So far, I don't need any accomodations, except maybe for soundproof walls since I apparently yell everything I say!! I am worried, though, about being fired later down the road on the grounds of another (fictitious) reason once I really start having trouble, because I won't be able to do my job in the same way.

 

[KellyC]

I would really appreciate any replies about Otosclerosis. In addition to my original questions, I wonder if anyone else who has gone through this experienced a lot of fatigue and physical exhaustion?

 

[KellyC]

So I guess no one else (thanks, Beach Girl) is going to answer me? I stopped in to add an update that I'd signed up for an ASL class, but since I am apparently having a conversation with myself, it seems a bit silly.

 

[Bottesini]

So I guess no one else (thanks, Beach Girl) is going to answer me? I stopped in to add an update that I'd signed up for an ASL class, but since I am apparently having a conversation with myself, it seems a bit silly.

People with otosclerosis are late deafened. Late deafened people have a tendency not to stay at Alldeaf for very long.

So there are probably very few people who have otosclerosis reading this.

Since you specifically asked for people with otosclerosis to answer your post, you lowered the pool of potential respondents tremendously.

 

[KellyC]

Thanks, Bottesini. Why don't late-defended people stay on AllDeaf?

 

[Bottesini]

Thanks, Bottesini. Why don't late-defended people stay on AllDeaf?

:P I swear it's not my fault!

Really it's kind of culture shock I think. They find out it's different from their familiar world, and a lot of times they decide they would rather seek adjustments to live in the hearing world.

 

[KellyC]

Oh. That is disappointing that everyone is so separated. I mean, maybe your native language is ASL and mine is English, but we are both on this forum reading and writing in the same written language. Do I need to start IUSedToHearButMyEarsTurnedToBone.com? J/K about that last part.

Thanks for explaining that the other people with Otosclerosis ran away, because I was really developing a complex that you all just ignored me because I am not yet deaf. With your response I can take it a little less personally, while at the same time knowing that no one expects me to stick around either.

 

[sallylou]

I'm late-deafened and you haven't gotten rid of me yet.:P

I probably have cochlear otosclerosis. I have a genetic connective tissue disorder, which includes bone dysplasia (not just in my ears). No definitive diagnosis, in part because I refuse to be poked on more or travel. In the end, knowing would not change my situation in any way.

No one can tell you how your particular medical condition will progress. Even within families with the same genetic defect, the course of the hearing loss progression may be different. Doctors cannot predict the future. You can learn as much as you can about your particular condition but that is not going to answer the question of when or how you will lose your hearing.

I recommend learning ASL and getting as much support as possible. That's what I did. And I'm still hanging around here.

 

[KellyC]

Thanks, SallyLou. If you have balance issues, did they get worse when your hearing loss progressed? I know no one can predict how it will go for me, I just want to hear others' experiences. I read that Citrical (calcium+Vit D+magnesium) can slow the bone remodeling. Do you know anything about that? I am taking ASL classes starting in January and I will need all the time I have to learn it!

 

[deafskeptic]

I'm late-deafened and you haven't gotten rid of me yet.:P

I probably have cochlear otosclerosis. I have a genetic connective tissue disorder, which includes bone dysplasia (not just in my ears). No definitive diagnosis, in part because I refuse to be poked on more or travel. In the end, knowing would not change my situation in any way.

No one can tell you how your particular medical condition will progress. Even within families with the same genetic defect, the course of the hearing loss progression may be different. Doctors cannot predict the future. You can learn as much as you can about your particular condition but that is not going to answer the question of when or how you will lose your hearing.

I recommend learning ASL and getting as much support as possible. That's what I did. And I'm still hanging around here.

Why would us prelinguals want to get rid of you?

 

[deafskeptic]

Thanks, SallyLou. If you have balance issues, did they get worse when your hearing loss progressed? I know no one can predict how it will go for me, I just want to hear others' experiences. I read that Citrical (calcium+Vit D+magnesium) can slow the bone remodeling. Do you know anything about that? I am taking ASL classes starting in January and I will need all the time I have to learn it!

That will come in useful especially if you can find other deaf to socialize with.

 

[KellyC]

Hi DeafSkeptic. My fiance has agreed to learn ASL, too, but I hope to find a patient deaf signer who will be my friend. I hope its not all hearing people in class. I chose to register for the one that was held in the evenings at a deaf school.

 

[rockin'robin]

Late deafened here too...but I've been around for a few years and no plans to leave unless I'm banned or leave this world for another!...

I dunno nothing about ur disease...but I have Cholesteatoma and will have surgery very soon....ear infections are a life-long thing with me also....as for my Balance, it comes and goes....so I'm very careful everywhere I go and where I walk.....

I'm sure there are some support groups for this disease you have...look on the Internet, as I did for Cholesteatoma support groups (Yahoo)...

Wishing you the very best!

 

[Jazzberry]

KellyC, I wish I could answer your questions -- but I can't.

All I can do is suggest more areas of inquiry --

* Look into the BAHA hearing aid and competitors that are designed for people with middle ear issues.

* Find out if its better to go with a BAHA type hearing aid or stapedectomy?

* Since you have otosclerosis, does that mean eventually you will have cochlear otosclerosis? Is that a contraindication for a cochlear implant should you want to go that route?


--

As for the ADA, I don't know as much about it as I would like and I hope someone else can step in and answer your questions about that. But I would go ahead and make a list of your responsibilities and think about which if any require hearing. HAs and ALDs (assistive listening devices) may be all you need to deal with those responsibilities. If not, there may be other ways to take care of your responsibilities. Or if they only represent a small part of your current job perhaps you could trade responsibilities with someone else. As long as you can do your job with just minor accomodations from your employer -- its illegal to discriminate against you if the company is larger than a certain number of employees (I don't recall the number).

You might want to look through this web site: ADA Home Page - ada.gov - Information and Technical Assistance on the Americans with Disabilities Act
It's an entire web site set up by the govt to explain the American With Disabilities Act.

--

Every D/d/HH group has a different perspective. But since Botts said late deafened adults don't tend to stick around here and otosclerosis happens mostly among late deafened adults I would look for other forums and yahoo groups to ask your questions. Meeting people in real life is nice too. Organizations that I know of that have real life meetings are Hearing Loss Association of America and Association of Late Deafened Adults.

Hope you stick around!

 

[Bottesini]

I thought they are moving away from stapedectomy in otosclerosis and it is not long lasting as the disease progresses.

 

[KellyC]

Late deafened here too...but I've been around for a few years and no plans to leave unless I'm banned or leave this world for another!...

I dunno nothing about ur disease...but I have Cholesteatoma and will have surgery very soon....ear infections are a life-long thing with me also....as for my Balance, it comes and goes....so I'm very careful everywhere I go and where I walk.....

I'm sure there are some support groups for this disease you have...look on the Internet, as I did for Cholesteatoma support groups (Yahoo)...

Wishing you the very best!

Thanks, Rockin' Robin! I will check out Yahoo groups. I did manage to find a blog on Otosclerosis. Here it is in case someone may be interested: Otosclerosis - a disease of the middle ear.

 

[KellyC]

Hi Jazzberry. Thanks so much for the ADA info, I will definitely check that out! Because I am in my 30's, its not really feasible that I'd be able to simply trade jobs with someone else at my company. I would need a whole new career path because most of my coworkers are scientists, medical writers, and epidemiologists. I'm in business development, so I couldn't exactly move to another department since I am not medically trained. I also manage our global programs, so I am often in foreign countries struggling to understand the foreign doctors through their accents. Without going on and on, I wont be able to do my job when I can't hear at least as well as I can now. So far, the only adjustment I've had to make was moving my desk phone so it sits facing the doorway to my office. that way, when the phone light flashes it will be in the same sightline as people who walk into my office to talk to me.

I am not in the market for a hearing aid, at least not yet. Like Bottesini said, I was told that the stapes surgery would only produce temporary improvement because the bone just keeps on growing and growing.

It is not possible to determine if my Otosclerosis will travel into the cochlea. I was very recently diagnosed so the rate and course of progression can't be predicted. Not knowing is hard.

I will check out the organizations that have meetings, too. Thanks again!

 

[sallylou]

Yes, stapes surgery is not very helpful in the long term. Don't we have someone here who had stapes surgery? Generally, it can buy some time until losing hearing.

Balance issues get worse but not unbearable. If you have balance issues, you may not have just conductive hearing loss. I don't think that people with conductive hearing loss limited to the stapes have serious balance issues. It is possible that you have both conductive and sensorineural hearing loss together. Did you talk to your ENT or audi about balance issues?