Otosclerosis?

iVillage Member
Registered: 03-26-2003
Otosclerosis?
10
Thu, 06-11-2009 - 5:09pm

Does anyone here have experience with this? I just got a diagnosis of this today (I'm 34yo) and my mom and maternal grandfather both have/had hearing loss probably due to the same thing. The dr. mentioned surgery and hearing aids and I was given the impression there were risks to the surgery that there weren't to hearing aids but that I'd always need louder and louder hearing aids. I don't know if the risks were downplayed on wikipedia and elsewhere online, or whether he was exaggerating about them though, since lots of online places seem to indicate surgery is a very good option with minimal risks.

Any experience BTDT's? TIA!

iVillage Member
Registered: 03-24-2003
In reply to: macbump
Thu, 06-11-2009 - 9:56pm

Bienvenue!!

Maria :)                


iVillage Member
Registered: 03-26-2003
In reply to: macbump
Fri, 06-12-2009 - 12:16am

Merci d'avoir pris la peine de me réécrire Maria.

I don't yet know how involved my situation is, however I do know my mother has it (in her right ear; mine is in my left), her father had it (and was pretty much stone deaf by the end of his life, but only in that ear) and his father also had it. They too had it in their right ear. My middle child (daughter Nyssa) has a history of ear infections and they all seem to happen in her right ear and I was wondering just tonight if this is liable to affect her in the same way some years down the road. I guess we'll see later. Like I was saying to my dad, who was telling me he was sorry that I have this, it's not like I need triple bypass surgery or have a brain tumor. I already wear glasses, and have never had braces on my teeth but I see it along the same lines. A nuisance perhaps, but a major health concern, no...

Strong family history you say, in any case? ;-)

I was interested in the hormonally driven part, since I just had a baby last year. And now, in the last few mos, is the first time I've noticed it really. I was saying to the ENT I saw today that if I turn and lie on my right ear, so my bad ear is facing up, I can't hear DH snore but if I am on my left side with the right ear facing up, I hear him loud and clear. ;-)

I was also wondering, if it is hormonally driven and often presents after/during a pgcy (as I've been reading) if it will perhaps go somewhat into "remission" now (I mean, not progress as fast)? In which case maybe I'd be ok with just a hearing aid?

I also was wondering about types of hearing aids, do you know about them too? I remember when my grandfather got his first hearing aids (which is probably coming up on 20 years ago), the one for his otosclerosis-affected side had to be coming out of the ear b/c it was "special technology" (I think conducting through bone?) but he also had plain age-related hearing loss (less) in the other ear and wore a smaller aid in that ear. Are there similar restrictions on hearing aids these days or do most hearing aids work with all kinds of types of hearing loss? I've been doing a little looking online and googled the types of hearing aids most commonly bought and saw a little one by siemens called a vibe which looks totally *cool* (like a tiny bluetooth emitter/receiver) but I was wondering if it was even realistic to think that something like otosclerosis could be compatible with such a cool-looking device. ;-) Am I just condemmed (if I use hearing aids) to go with a regular old behind-the-ear type device?

The doctor seemed to be saying that since it will progress anyhow even with surgery and the surgery has risks (aside from regular surgical risks) like damage to the nerve meaning permenant deafness that can not be corrected by hearing aids, that it might not be the best option. He didn't say it in words of one syllable, but he kind of alluded to it. Which is why I'm looking these things up myself too. ;-)

TIA again!

iVillage Member
Registered: 03-24-2003
In reply to: macbump
Fri, 06-12-2009 - 8:23am

Hi again.

Maria :)                


iVillage Member
Registered: 03-26-2003
In reply to: macbump
Fri, 06-12-2009 - 10:24am

Vive le Québec libre, hien? They do always like doing things differently. *sigh*

I lived in Québec for 12 years. I'd love to go back someday but not before my son is a bit older. I'm living in BC where my parents are and they didn't get to see my daughters grow up regularly since we were in Québec until the youngest daughter was almost 3, so I'd like to let them see Tristan grow a bit more. In the meantime I'm enjoying BC's climate, too!

iVillage Member
Registered: 03-24-2003
In reply to: macbump
Fri, 06-12-2009 - 4:15pm

I loved BC!!!!

Maria :)                


iVillage Member
Registered: 03-26-2003
In reply to: macbump
Wed, 07-08-2009 - 12:10am

Maria, I met with the audiologist and did some shopping around as well for prices. I figured as with many other big ticket purchases buying in the USA would be cheaper ;-) (cars? ;-)) but in fact, I compared the exact same model there as here and was told the exact same dollar price (within 5 dollars), meaning more expensive to buy in the USA. I was shocked!

I have been told the vibe I was looking at is no longer made in the USA but it seems like Canada still has it for some reason!

I was potentially looking at the Phonak Yes III or the Oticon (sp?) Dual, the kind of delta-shaped one. It's cute ;-) but it is more pricey I think. And from what I was seeing it only has one program where the Yes III has 2 programs?

iVillage Member
Registered: 03-24-2003
In reply to: macbump
Sat, 07-11-2009 - 1:41pm

I'm also surprised that the aids are less expensive in Canada!!

Maria :)                


iVillage Member
Registered: 03-26-2003
In reply to: macbump
Sat, 07-11-2009 - 2:39pm

One place here gives a 90 day guarantee, another a 45 day one. Either way, you have time to try them out a bit...

That's fun that you got to go to Montréal. I haven't been back to Québec since fall of 2006. :'( I miss it terribly but finances are not great...

I'll explain my thought process on the hearing aids...see my grandfather was completely deaf in his right ear by the time I was born (which was in his 70's) and later, when my grandmother started losing her hearing in both her ears due to ageing, he agreed to get hearing aids along with her, to do it as a couple, try and work through it. She never took to them, and he barely did at all. Obviously these too were the analog ones, basically a speaker in your ear, but my thought was, if you are so old when you try them, you are really used to not using them and I felt there was probably too steep of a learning curve to them for him. I'd rather get my ears and brain learning how to use them properly *now* and if my hearing gets a lot worse maybe later I can opt for the surgery even if by then I might still need an aid after the surgery. According to the doctors I've said, my inner ear, cochlea and hair stuff (forget their name LOL) and all that are functioning fine, it's just the bones. So all I need right now is an "amplifier"...

Maybe I'm wrong to think of it this way (?) but my 9yo daughter was found to have a significant eyesight difference between her left and right eyes when she was 5.5 and entering kindergarten. She had to use a patch on her eye because her brain was in danger of basically "shutting off that eye" due to bad eyesight, which would ultimately render her blind in it. After 6 mos of patching it was much better already. But the first few times we put a patch on the good eye she literally said she couldn't see. I wouldn't be surprised if the same thing can happen to the ears...your brain basically stops accepting signals if they are too low, shutting it off? I dunno.

But either way I want to get that hearing back and honestly? Up here in Canada, I don't *know* but my bet is, as it is not a life-threatening situation per se, I could wait a LONG time for surgery. Depending on a few different factors I suppose. So let's say, just for kicks, that it took me 6 mos to get in and get the surgery, I figure I'm better having a hearing aid to begin with so at least I can hear in the meantime KWIM? :-)

iVillage Member
Registered: 03-24-2003
In reply to: macbump
Sat, 07-11-2009 - 10:03pm

You have some good points about getting used to the hearing aids!

Maria :)                


iVillage Member
Registered: 03-26-2003
In reply to: macbump
Sun, 07-12-2009 - 3:59am

Yes, they did tell me it was progressive and would get worse. He said it would get worse EVEN if I had the surgery. I dunno, is it the kind of thing you can have the surgery for over and over, each time it comes back, or is there a limit?

Right now, my max. loss seems to be around 30 db. I think I already said that. We had trouble taking the test the first time; baby was in the booth with me banging on the walls when they did the right ear, and out in the stroller bawling his eyes out when they did the left ear and the booth isn't 100% soundproof b/c I could even hear him through the walls and it was distracting. I did another test the other day and nursed the baby through the test and this time he was quiet and the results were therefore better and more accurate.