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Hearing Disorders Message Board


Hearing Disorders Board Index


Ok Guys, here's my story. Share yours with us if you feel comfortable doing so.

My hearing started getting bad when I was 18. I joined the Navy and during boot camp they almost sent me home because of my hearing. I never noticed that I was having hearing issues and pretty much just ignored it until many years later.

I went to the audiologist at age 26 and he told me - "your bone is hardening and doesn't wiggle like it should, it's partially hereditary and very common. Your hearing isn't too bad, just get hearing aids." At that time both ears were affected but the left one was a lot worse than the right. I asked if there was any surgery that could be done to correct it, he said [B]"no, just get hearing aids".[/B] I was young and dumb and took him at his word that there was no surgery available. I was also too worried about appearances and refused to wear hearing aids so I just said "huh?" alot to everyone.

At age 27, I had my first child. I weighed 93 lbs before I got pregnant...and I gained 65 lbs during the pregnancy. I lost all the weight in about 3 months and was back at 93 lbs - That is when my hearing went downhill extremely fast in the left ear. The doc said that gaining all that weight changed the bone structure of my entire body - including my facial and inner ear bones. Then loosing it so fast changed the bone structure AGAIN... which really messed up the "bones ability to wiggle" to make sound.

I gave in and got a hearing aid for the left ear because I really couldn't hear much at that point out of that ear. I could still hear ok in the right one, not perfect, but ok enough to function.

At age 29 I had my second child. Same story - 93lbs before, gained 56 this time, lost it in 3 months...and lost the hearing in the right ear in the process.

I was going to loose the hearing in both ears regardless - all the quick weight gain and loss just accelerated it about 10 years is what the doc said.

So, a hearing aid for the right ear was now a necessity. Every time I went for hearing tests, then went to get new hearing aids over the last 13 years..no one - I mean NO ONE, has ever said that it could be corrected with surgery. I asked the first 5 years of going to the ear docs and was always told "just wear hearing aids". I finally quit asking and decided that this was how life was going to be and I would just have to live with it.

If divorce is EVER a good thing, it was for me. I had to get on my own health insurance. I also got a bf. He did some research and found out in September 06 that there was indeed a surgery to fix it and I now had a health insurance company/doctors that wouldn't lie to me. It was then that I realized that it was because my insurance during all those years was Kaiser Permenante [B]HMO[/B]..and they just didn't want to pay for it and had trained their docs NOT to tell people that there was a surgery to fix it:mad:

So, here I am now at 42 years old, feeling stupid that I never checked things out on my own and I just took the doc's word about no surgery being available. I am also very excited about the future. The last 5 months have been a whirlwind of excitement/hope for me. :blob_fire
I went to a couple of specialists in Dallas, went through many many hearing tests, etc. and decided to get it done, the left one first because its 90db. I'm on the road to recovery on the left ear and already excited about having the right one done. The right ear is 60db.

I'm really excited about joining the world again because I had really withdrawn from everyone the past few years. I avoided social functions of all types because I knew it would be more of a hassle than anything to even try to have conversation and I would only get bummed/upset/depressed, whatever you want to call it, if I did go. I haven't watched TV in almost 2 years because it just frustrates me. Again, my bf finally got me hooked on the "captioning" on the tv so I wouldn't get frustrated and i've been able to watch movies reading the words the last few months. He has been such a blessing to me.

Now for current stuff.
A little pain in the ear today but nothing unbearable. The "heartbeat or pulse" sound rattling my head yesterday lasted about 7 hours and thankfully has not started again yet today. Still no taste issues. I did get really dizzy this morning getting out of bed and almost fell but I caught myself. It was so good yesterday not being dizzy all day that I forgot to be careful. I won't make that same mistake again. I'm hearing a little out of the ear but it's still really muffled sounding. Packing is still in there and the cotton ball too. Ear is still draining but not too much.

Yes, I was given the same restrictions that Andy was given. No flying, elevators, lifting, nose blowing, sneezing or anything else that creates "internal pressure" on the ears for 3 months. No water in the ear for a month. My doc even said that it's possible to do the right ear as early as March. We'll see. I've read stories where some people still have side effects for up to 6 months. When all mine are gone...we'll start over again.

Andy - just spend lots of time laying on the ground rolling around and playing with your wonderful son. The months will pass quick enough and you will be able to toss him in the air before you know it - and be able to hear him giggle!

I will ask you both tell everyone you know that wears hearing aids that there are different surgeries available. They may choose not to go that route, but make sure they know it's an option. I just wish someone, anyone would have told me years ago. There is a lady at my work in the same situation - for 10 years - and no one had told her either. She goes in Feb to my doc to start the process.

I'm so happy that however you both found out about the surgery possibility that at least you DID find out.

Dwalt - is your hearing loss a recent thing or an issue you have dealt with for years also? Andy has been dealing with it for 6 years, I'm going on 24 years.

I know i'm prolly make my posts too long, but i'm just so excited about many things these days that I want to tell the world. I feel like i've been given a second chance at a near normal life and my children will no longer feel like they have to speak for me, be embarrased for me or explain that I can't hear every time we go somewhere. The burden will be lifted off their shoulders.:)

More later,

-Carol-
Hi everyone,

Just recovering from a stapedectomy which was done yesterday morning. Was expecting to be kept in overnight, but got out last night as I was doing ok and not too dizzy. Not too painful so far either, a bit like the pressure you get when flying but slightly more painful, but manageable with painkillers.

Not sure if hearing has improved because of the packing but I'm positive everything sounds louder than normal. I've been reading reports about metallic, or sweet taste but I seem to have a salty taste and I've also got slight numbness at the back of my tongue on right side.

If this is successful I'll be wishing I'd got it done two years ago, when I was first offered it, but I was so worried about losing what little hearing I had left in my right ear. When I reaslised my left ear was going the same way, I had to go for it.
Does anyone know how soon you can fly after this op as I stupidly forgot to ask and I'm hoping to go on holiday in 9 weeks.

Lorraine
I had a stapedectomy on my left ear nearly 3 months ago.

Overall things went well - my air/bone conduction gap (the difference in hearing between listening with headphones and hearing with bone conduction) has been pretty much closed in the operated ear. I have a mixed loss – the otosclerosis (hardening/fusing of the bones) seems to have been cured but the sensaurial loss is, as expected, still there.

My hearing is much better in the operated ear. My loss has gone down from around 50db to about 20-30db. I can now get by without a hearing aid in the operated ear – which was my main hope. I can also get by without a hearing aid in either ear which is really useful in those situations where I may not be wearing a hearing aid e.g. by the pool or in bed.

I have moderate tinnitus and that has not been changed by the operation.

One thing that strikes me reading this forum is the range of experiences that people have of this operation. I wonder how much of this is down to the different procedures used by different doctors around the world. (I am in England.) I also wonder how much the experience of the doctor makes – the surgeon that did my op had done around 250 stapedectomy ops but not all surgeons are going that experienced. Some will have done many more than that.

For me the operation was done under general anaesthetic using a laser to remove the affected bones.

The prosthesis that replaced the bones in the ear was made out of titanium. I had heard that some surgeons still use stainless steel! Putting anything that is sensitive to magnets in your head seems like a very bad idea to me e.g. you could then not have an MRI scan.

I stayed in the hospital one night after the operation and then went home the following morning. Generally I felt OK but tired for a few days after the operation. I did not feel any pain so I took no painkillers. I was not given any antibiotic drops.

In the hospital I went to they also have surgeons doing the operation under a local anaesthetic. The idea of using a local anesthetic is so they can test the hearing of the operated ear while the operation is in progress so that they can check it is working before closing up!

I had no dizziness after the op and according to my surgeon I should not have expected any. (This seems to contrast with some peoples experience on these boards.) When I asked about avoiding any pressure changes, e.g. flying, sneezing, he said that the operated was just as strong as a normal ear so I didn’t need to worry about these.

About 5 days after the op I started to get really dizzy and started to feel motion sick. I went and saw the surgeon and he took the packing out of my ear. This was a few days earlier than would normally be the case. He suggested that the pressure of the packing as it swelled with blood and pressed up against the eardrum was the cause of the dizziness. The dizziness subsided within a few hours of the packing being removed but it took about 2 weeks for my balance to return to anything near normal.

Even now, nearly 3 months later my balance hasn’t entirely returned to normal. Generally it is OK but sometimes I get a distinct feeling that the world is moving even when I can see that it is not. Also if my ear pops it can feel like the world suddenly tilts and then goes back to normal. My general feeling though is that my balance is continuing to get better but it is a slow process. My tightrope walking dreams will probably have to be put on hold :-)

Once the packing was removed everything sounded incredibly loud (traffic/trains were painfully loud) and also very flat. Over the next couple of weeks I adjusted to my new hearing. The world started to sound less overpoweringly loud and much more normal, i.e. less flat. Now I can get by without a hearing aid but because of my high frequency loss I sometime use my hearing aid when watching TV. (I had my hearing aid reprogrammed once I had had my hearing test after the op.)

Good luck to everyone else who has had or is considering this operation,

Gary





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