Otosclerosis - My Info and Questions

sallylou said:
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?
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I wouldn't want to go through surgery just to delay something inevitable. Well, except death, I would have surgery to delay that of course! You know what I mean.

The ENT wrote me a prescription for vestibular rehab and gave me a list of places that offer it. That was the extent of the info on the balance part. I was somewhat in shock, I think, because I was just sitting there like this happened to me everyday, smiling and nodding. It wasn't until days after the appointment that I started dealing with it. I didn't know to ask where in the ear the Otosclerosis was visible on the CT scan.

I have basic balance issues where I can't walk straight, I sway, can't close my eyes and stand still, that stuff. I also have real vertigo and episodes of feeling lightheaded -which could be related to other medical situations. From my internet searching, I think I either have Meniere's on top of the Otosclerosis or Otosclerosis past the stapes.
 
I haven't had vestibular rehab. I'm going to pass on that. I'm just extra careful.

Anyone here gone to this rehab?
 
KellyC said:
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!
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Looks like you have a lot of it thought out already. If the stapes op is not a solution that will last a long time, than I agree its a good idea not to go for it.

If they are available in your area, have you considered taking lipreading lessons also? Some places prefer to call it speechreading.

I have trouble with accents over the phone, but in person I often don't. Combining lipreading, context and what I can hear - I usually understand people with accents. Of course, working in Manhattan, I get a lot of practice with accents.

Not everyone can lipread to the same degree -- some people speculate that the ability to lipread is partially dependent upon residual hearing in the pitches that aren't normally tested and that the ability to hear the harmonics of the fundelmental pitches of human speech is what allows some people to lipread better than others. Other people say its a talent like art or music --and that the ability to lipread just varies for the same reason that artistic or musical talent varies among people. It just does. Regardless of what the actual reason is as to why lipreading ability varies -- I just wanted to toss that idea of lipreading out there for you to consider. Everyone lipreads (even hearing people), but when you become HH it often pays to learn how to lipread formally in a class to improve that skill.

I sent you a PM with a link to some of the sites I mentioned upthread.
 
Thank you again! I admit I did not even know there was such a thing as formal training to read lips. I will look into that, too. That ability would go a long way in helping me network, especially in other countries. Do people get uncomfortable when a speechreader stares at their mouth and not their eyes during conversation, or don't they even notice?

I have been reading and learning a lot. I like to be informed and prepared for everything I can in life. Your replies and others have been very helpful to me. I appreciate your guidance.
 
KellyC said:
Thank you again! I admit I did not even know there was such a thing as formal training to read lips. I will look into that, too. That ability would go a long way in helping me network, especially in other countries. Do people get uncomfortable when a speechreader stares at their mouth and not their eyes during conversation, or don't they even notice?

I have been reading and learning a lot. I like to be informed and prepared for everything I can in life. Your replies and others have been very helpful to me. I appreciate your guidance.
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Most people don't realize they are being lipread without prior notice. When the eyes are looking at the speaker, you have to pay close attention to small clues that show that they're watching your lips. It is a tiring job though. Just about everyone here who excels in it gets tired after long conversations from continual focusing. Personally, I'm not a good lipreader so I can't comment on the matter, but there are previous topics scattered across the board for this.

What's better are people who sign and mouth/speak and sign words at the same time, this is known as SimCom and seems to helps most oral people who just decided to learn sign.

Have you any luck on locating your aunt? Do you know which region of california she lives in? There are Deaf events in both NorCal (SF) and SoCal (OC, LA, SD) and the deaf community is a pretty small world, if she's known by someone, chances are someone in one of those groups knows her.
 
Hi Naisho! SimCom sounds really cool but its hard to imagine that is ever be able to speak in English and ASL at the same time! That must require a lot of coordination. It would be really helpful as a new learner, though. Does the person say the exact name of the sign or the whole sentence as it would be said in English?

I don't know where in California my aunt lived. Her name is Marcella Dubois (husband is Andre). I think she moved recently so she may not be in CA anymore. Do you think I should try to contact one of those local groups? I sent to emails to people with her name but no one answered them.
 
When you communicate in ASL, you actually break down all the unnecessary additions in sentences. Not sure if you have came across this yet while learning about sign language.

Like if you were to say "I'm going to to the store to grab some chips and 7-up"
ASL would be more truncated into something like "Me Store go. Buy chip, 7up"

So when people use SimCom, sometimes there are problems adding the extra words, either you say it and they understand, or shorten it down to a version you think is acceptable.

I have some information about your aunt, I'll send you a private message. Check your inbox in a second. Click here to check them. Private messages
 
KellyC said:
Thank you again! I admit I did not even know there was such a thing as formal training to read lips. I will look into that, too. That ability would go a long way in helping me network, especially in other countries. Do people get uncomfortable when a speechreader stares at their mouth and not their eyes during conversation, or don't they even notice?

I have been reading and learning a lot. I like to be informed and prepared for everything I can in life. Your replies and others have been very helpful to me. I appreciate your guidance.
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Sometimes I can lipread someone and still look at their whole face. Facial expressions can be helpful also, that's why some people prefer to call it speechreading instead of lipreading.

Sometimes I really need to zoom in on the lips. This could be because I'm tired, or they are very soft spoken or it's extremely noisy or other reasons.

Personally I think some people notice and some people don't. If there's one on one communication going on, I think more people are more likely to notice where you are gazing. Some may not know on a conscious level exactly where you are gazing but I do think they start to notice something is different as the conversation continues. So perhaps I disagree with Naisho on this one.

I do think almost everyone notices when someone is looking at them without a "break".

I prefer to let people know that I'm lipreading them anyway. I tend to bring it up when they look away -- I'll ask them to repeat themselves and I'll mention at that time that I read lips and that I will understand them better if we face each other.

FWIW, I have a hard time lipreading in a group of hearing people because its harder to know who is going to speak next.

I have an easier time lipreading when I'm with a group of HH people that are use to socializing with HH people. I'm not sure how -- but we seem to know who is going to speak next. I think because we all know we are lipreading we interupt less, make it more clear when we are changing the subject, and perhaps we speak more slowly also. We also definitely repeat more for each other. *

Also there are ALDs you can use to make communication easier. As HL gets more severe, HAs aren't enough. Some ALDs you can use are FM systems and even hand-held mics. They can be very helpful.

You might want to start looking at ALDs catalogs on-line so you can get familiar with whats available. Here's one as an example: link


* Note: I decided I want to learn how to sign also. I'm learning at lifeprint.com and going to ASL meetup groups when I can.
 
Thank you again, Naisho and Jazzberry! I really appreciate the clarification about SimCom and speechreading (I see why it is called that now!). It is comforting to know there are a variety of ways to communicate. I will check out the ALDS, too. :)
 
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