Gave In; Getting Hearing Aids

[vegasjon]

Hi all. I gave in today and was fitted for hearing aids. Can't get over feeling like it's giving up hope that things will ever get back to normal... and, yes, I fully concede vanity is in play, as well. I'm past three years now with T, had a right side stapedectomy last November, and have been battling what has been diagnosed as otosclerosis and hydrops for too damn long. I'm on a twice-a-day diuretic (Dyazide) and once-a-day does of Florical (to hopefully thwart any more bone growth inside the ear). It's helped manage -- somewhat -- the hellacious pressure and fullness attacks, but (of course) does nothing for the T or the actual diminished hearing itself. So here I am. Ordered a pair of Phonak Q90 devices and should have them in a couple of days. We'll see how much it helps with the T (and, for that matter, my overall hearing). I know it's the right play, but I still feel defeated.

Anyway, best holiday wishes to all. Wouldn't a "silent night" be great???

 

[glynis]

Im sure your hearing aids will help you.
My son had his ear bones out and new drum due to the same operation and needed a second op years later and just had MRI done as might need another one done as having problems.
He could have aids but as yet refuses at 20 to wear them.
My hearing aids are the best thing I have for my tinnitus...lots of love glynis

 

[cowdodge]

What is wrong with hearing aids? Most of the time you cannot even see them being worn. If they do the trick to help forget the vanity!

 

[brody24]

I wear a HA in one ear due to history of surgeries resulting in pretty severe hearing loss. Got a very small behind-the-ear aid that is the same color as my hair. Almost no one even notices it unless they are directly behind me or specifically looking for it. And its not like I'm some senior citizen. I'm only 28. But it doesn't bother me at all to wear one.

 

[PaulBe]

The modern hearing aid is so small and delicate that the biggest worry you would have is forgetting you are wearing it when you step into the shower.

 

[Michael2013]

The modern hearing aid is so small and delicate that the biggest worry you would have is forgetting you are wearing it when you step into the shower.

This is true. I did that once. Thankfully I realized pretty quickly and didn't ruin them!

 

[vegasjon]

So it's been - what? - half a year now with the hearing aids. And I hate them.

That's not entirely fair. What I hate is being dependent on them. I absolutely do function better with them in. I'm guessing I have 80-90 percent "normal" hearing when wearing them. So "yay!" I can watch tv or have a conversation (I still have trouble with low-talkers).

Except that I'm miserable. I hate that I can't hear my wife at night because I took them out... That I'm "signing off" when I get in bed. I hate sheepishly changing batteries when they die at the most inopportune moment. I hate slipping them off to go in a pool or on a roller coaster (I may hate them, but I'm not risking the thousands of dollars invested). I hate hearing wind static when driving with the window open and telling my kids "don't touch my ears" when we're playing.

And yeah, I still feel like everyone notices.

Every night I scan the web looking for hope that some day there will be a real treatment for T and for hearing loss. I can't believe how little has been achieved. But this is reality. And I hate it.

Sorry to be a wet blanket. It was worse a year ago when I also had devastating H (which is mercifully much less severe now). I do accept that I am better off than so many others, but it's hard to get excited about that when you still have the ringing and you are totally dependent on a machine just to function.

Sigh.

 

[Ears Hurt]

Hopefully, the medical community will catch up with modern science one day; it seems we are still primitive in testing and treatments regarding hearing. We are all in the same boat just different degrees impact on our hearing. Reading this scares me even more about having future damage to my ears.

 

[vegasjon]

Hopefully, the medical community will catch up with modern science one day; it seems we are still primitive in testing and treatments regarding hearing. We are all in the same boat just different degrees impact on our hearing. Reading this scares me even more about having future damage to my ears.

I don't mean to scare you (or anyone else). I'm just venting, I suppose. My hearing loss is tied specifically to otosclerosis, which accounts for only a fraction of T cases. Very different than most, I believe. I do worry about further hearing deterioration and what might happen in the years ahead. I also worry that my children may be subject to the same impairment, as otosclerosis is believed to be hereditary.

 

[GregCA]

I don't mean to scare you (or anyone else). I'm just venting, I suppose. My hearing loss is tied specifically to otosclerosis, which accounts for only a fraction of T cases. Very different than most, I believe. I do worry about further hearing deterioration and what might happen in the years ahead. I also worry that my children may be subject to the same impairment, as otosclerosis is believed to be hereditary.

Yes otosclerosis is quite "the gift" indeed. But there isn't always a hereditary connection. I have it, yet nobody in my family has it. Like you, I do worry about my daughter though.
Did you do surgery (stapedotomy)? I did, and it fixed my conductive losses, so I'm left with the sensorineural losses (I happen to be in the 10% of otosclerosis patients who have their cochlea attacked by the disease as well), and what I would call severe T (can't be masked).
Also I have no idea what otosclerosis has damaged in my cochlea (so I don't know what a proper strategy would be to "try and fix it"), and whether or not the disease is going to progress and turn me completely deaf quickly. That Damocles sword is tough to live with, I know.

 

[vegasjon]

Yes otosclerosis is quite "the gift" indeed. But there isn't always a hereditary connection. I have it, yet nobody in my family has it. Like you, I do worry about my daughter though.
Did you do surgery (stapedotomy)? I did, and it fixed my conductive losses, so I'm left with the sensorineural losses (I happen to be in the 10% of otosclerosis patients who have their cochlea attacked by the disease as well), and what I would call severe T (can't be masked).
Also I have no idea what otosclerosis has damaged in my cochlea (so I don't know what a proper strategy would be to "try and fix it"), and whether or not the disease is going to progress and turn me completely deaf quickly. That Damocles sword is tough to live with, I know.

Yes, you and I are one of the same. Had the surgery on one ear (in 2014) to address the conductive issue. They aren't recommending the other at this point. I also have sensorineural damage and lingering T. The surgery helped with some other things. I spent two years getting shoulder shrugs from doctors. If it had been properly diagnosed, I might be in better shape.

 

[GregCA]

The surgery helped with some other things. I spent two years getting shoulder shrugs from doctors. If it had been properly diagnosed, I might be in better shape.

What did the surgery help with? For me it seems to have helped with hyperacusis. I had hopes it would take care of my T, but that didn't happen.

Are you taking anything to slow O down? I'm taking heavy doses of Fluoride & Calcium. I suppose this can't be very good long term.

I know what you mean about diagnosing it. I also went through hell to try and get the proper diagnosis. It took a couple of months to finally figure out what it was.

I'm not allowed to have hearing aids yet (I did surgery on 4/20), but I think I'll have to go for them.

 

[vegasjon]

What did the surgery help with? For me it seems to have helped with hyperacusis. I had hopes it would take care of my T, but that didn't happen.

Are you taking anything to slow O down? I'm taking heavy doses of Fluoride & Calcium. I suppose this can't be very good long term.

I know what you mean about diagnosing it. I also went through hell to try and get the proper diagnosis. It took a couple of months to finally figure out what it was.

I'm not allowed to have hearing aids yet (I did surgery on 4/20), but I think I'll have to go for them.

Before surgery, I had tinnitus (ringing), hyperacusis (extreme sensitivity) and a persistent Pulsatile effect (throbing). The throbing is gone. The H went away too (though I had a recent minor recurrence that seems to have been temporary). They say the conductive hearing improvement also shows up on my audiograms.

It did nothing to silence the T. A year after the surgery, I was hit with horrific pressure sensations (fullness) that were a daily occurrence. It was maddening. I was getting steroid treatments to fight it, but you can't do that forever. I was then put on Florical and Triamterene (a diuretic). I cut my sodium intake down, as well. After a month, it helped. I'd say the improvement is 90 percent. I am still on the Triamterene, but they told me to stop with the Florical after about six months. These days, my issues are mainly crappy hearing and the T.