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Mild to profound ski slope hearing loss


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Hello everyone, 

I have mild to profound sensorineural hearing, a ski slope starting mild at lower frequency to profound in the highest. . Tinnitus is horrible. just want to know how do you guys cope with this. Just some experiences. Are you also planning for cochlear implant in future if you have this type of loss now or have you had this type of loss at some point in past before going for implant.

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@Hopefulme

 

Have you seen Med-El info about the Sonnet EAS yet?  It is a combination of a CI for high frequency loss and a hearing aid for low frequency loss.  Check it out on their website and I believe we have a topic here called Sonnet EAS.

 

 

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Hi @Hopefulme

That's my hearing loss... The ski slope. Never had tinnitus. I was able to get by on lipreading for years. However, I decided to proceed with the CI when lipreading asking with the HA want cutting it. Just had CI surgery in August. Been using a CI for two weeks now. Didn't develop tinnitus and although I ended up losing much of my residual hearing after the surgery I gained far more than I lost. The CI is an amazing device. Hope you experience the benefits. 

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@Jewel

Yay!  Are people curious about your CI now that you are home in Jamaica?  How are you hearing at work?

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Hi @Mary Beth

Only one person has come up to me asking if I got my "earphone" and if I can hear well and if she can call me on the phone now. 

No one else has enquired. Yesterday my CI ear piece fell from my ear while I was having lunch and I couldn't get it to stay on my ear. I ended up with the whole CI off shortly afterwards. The person sitting before me didn't say anything.

I'm hearing pretty well at work. But the canteen is far too noisy for me. I held the work phone near my ear to clear voicemail and could hear! Yesterday I answered my friend's iPhone as she left it in my office. I took a message for her and she was shocked that I was able to hear her phone! 

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Wow @Jewel!  Terrific!

 

Try decreasing the sensitivity with your Fine Tuner in the noisy areas.

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@Mary Beth

Audi says the only thing I'm to use on the fine tuner is the changing of the programs. She hasn't shown me the other functions. So I'm not sure how to adjust the sensitivity. I find the canteen loud even on program 1 and that's the lowest volume. 

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@Mary Beth Thank you mam i will go through the links. That is some interesting stuff.

@Jewel thank you for sharing your experience with me. I am really happy for your CI and that everything is working great. Enjoy hearing the world :)

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Here is the link. @Jewel  I’ll give @Mary Beth a break today! She is so amazing and always helps everyone! 

 

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There are other options too. If you ares still haveing issues with it staying on. Like active wear or baby wear  things like this may work well for people with small ears. https://goo.gl/images/D318   Here’s some pics of it.  

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Hi @Jewel

Each CI audiologist follows her own procedure when activating us so definitely follow whatever your CI audiologist says.

It’s early days yet.  Lots will change for you yet.

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@Kara of Canada

 

The Fine Tuner in the video looks naked without a cool SkinIt or DesignSkin cover!

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Lol it totally does! 

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@Kara of Canada

I covered my Fine Tuner the week I received it.  I forgot what they look like uncovered!

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@Jewel  when did you start wearing hearing aids. Did u wear all the time since start of hearing loss? I have read that for CI to be successful we need to wear hearing aids always?

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@Hopefulme

I started to wear a HA in 2009. By that time my right ear was too far gone. My hearing loss began in late 1999.  I had recruitment where sounds can be much louder to me than they really are. I ended up not wearing the HA all the time because of that and since I found the part worn inside the ear to be very uncomfortable. I went through 4 HAs in 9 years! I found that I could manage by just lipreading and so I would just wear the HA when I had meetings. So must of the time I wasn't wearing a HA and I'm doing well with my CI. 

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Thank you @Jewel. It feels nice to talk to someone who understands our experience s. I did not understand what the recruitment was. Did you use any kind of device other than hearing aids which made everything loud?

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@Hopefulme

No I didn't use any other device. I just wore a HA in my better ear sometimes. It's probably a good thing that the surgeon changed his mind and did my better ear as I no longer have the recruitment problem. 

 

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Okay thank you @Jewel

heope you have great day:)

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Hopefulme, I also suffer profound ski slope hearing loss and struggled to wear hearing aids since my early teens. (My next birthday I’ll be 60!). I can’t remember how many HA’s I went through until I became a CI candidate and hit the Cochlear program at Sunnybrook. They tested me and told me what I had known my entire life. Hearing aids simply didn’t work for me. They just made the din louder. I would get a new set, struggle to wear them for a few months and then abandon them to a drawer. 

Once implanted, wow is all I can say. The implant simply works. I’m hearing sounds I haven’t heard since I was a kid.

You will hear “life changing” a lot here and be assured it’s not hyperbole.

The implant is far from perfect, I’ve had a bit of trouble with mine, but at the same time I have gone from 0% word recognition to about 80% in about a year and a half. The process is actually quite indescribable to someone contemplating surgery but having made the hard decision to go ahead, the results are simply life changing ?

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Exactly so, @Hicksy - it's not incremental, it's a hugely significant change!

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Forgot to address the tinnitus. I have had what I would say moderate tinnitus all my life. Mainly two distinct buzzings at different frequencies constantly which amplify or recede but always constant. Sometimes other sounds would intrude and it would get really bad, a constant roaring, but luckily never to the point where I would need to seek medical attention, just learned to live with it.

Once I put on my processor, the tinnitus just seems to fade away. If I really really concentrate, I may be able to pick up a touch of tinnitus but it is not noticeable at all when using the implant. When I take the processor off at night then the old tinnitus is very evident. It actually seems to be lessening a bit lately but I doubt it will ever go away. Others have said the same but as always, there are no guarantees.

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Hi @Hicksy,

Thank you so much for sharing your experience. I am just about to join college and looking forward in future to get a job. I am not yet a candidate for cochlear inplant so I have no other option than to stick with hearing aids. 

How did you manage then, since wearing hearing aids didn’t help, the college, job, how did you cope with hearing loss?

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Lip reading and very understanding friends and family. I used to have to call my wife at her work to listen to my messages to tell me what they were... I steered everyone I could towards using email ... still consider the original Blackberry one of the greatest inventions ever when my company adopted them ?

I just coped best I could but I wasn’t fooling anybody. But it did make me a very very observant person which was about the only positive.

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