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I want to hear, I want my life back!

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Edited

Hi everybody,

I am publishing this post in order to receive some feedback that help me to make this huge decision, should I get cochlear implants or staying the way I am?

My mother language is Spanish but now I am residing in US (I thing this is a relevant point in my case). I recently did two audiology tests, one in Spanish and the other in English.

The results were interesting (I suspected that), the hearing loss graphics are pretty similar, however the word recognition outcome are way different. The English word recognitiion L 16%, R 12%, in Spanish L 60%, R 52%. (I learned English as a mature adult when I already had hearing loss, so I never understood English normal).

My hearing loss is medium to severe on low tones going to severe and profound on high pitches, so hearing aids are not helping me (I quitted on them some years ago).

In two months I´ll turn 60, and my hearing loss started (not sure) about 30 years ago (it probably started earlier, however it wasn´t noticiable) but it has been worsening along the years. I passed from being an executive having meetings and leading a company to the point that I can´t even understand over the phone in English, but in Spanish I can with some difficulties, or having a regular conversation with a group or anybody who isn´t face to face and only without background noise…so, it is not point to look for a job :disappointed_relieved:

So, right now (I know you´ll understand this, most people who doesn´t have hearing loss don´t) I have isolated myself, I don´t go places where I have to talk to people, or reunions…and I only speak openly with close family that are patient with me. I have passed from feeling embarrashed, to stupid, to shy, and what the heck…I don´t care about what others think anymore, but I quitted talking to them, I don´t like to have hard time, or having to explain my hearing condition the to world anymore!

At this point and after the last audiology results and the audiologist and recommendations the only thing that it is going to help me are cochlear implants. I had never even considered this option, but I am now… I already set another appointment with the audiiologist to make some special test/audiology for clochlear implants (they said it lasts 90 minutes).

I have tons of questions, and I don´t want to decide anything until I get all the answers about it, at least the most important.

I am posting the audiology results if it helps you to give me your opinion. I am totally new to this subject, and I don´t know anything about anything, I.E. about the three main (or only) cocklear manufactures (they gave me brochures of the three), I don´t know if some is better or better for determined kind of hearing loss, I don´t know about processors, batteries, mainteinance, training/addapting curve, side effects, percentage of succesful or bad results…and so on.

Any information and personal experience as an user of this technology will help me to make the right decision, I count on you, the users even more than doctors.
If you can share this information with me it will help me better:

  1. or type of hearing loss that you have.
  2. What brand of you have.
  3. What your journey was in the first 6 months
  4. What have you achieved a s CI user.
  5. From 0 to 10 (10 is the best) how happy are you with your CI?
    Thank you so much!
    Feel free to ask me any questions! :slight_smile:
    Audiogram_Spanish

Audiogram_English

15 people in this conversation29 min readJump to latest

You are actually doing pretty good with that .
In the US you are not a candidate, close. I know the feeling. You are having a really tuff time out in life.
Please ask for a test done in noise!

Getting a thorough evaluation for cochlear implants is a good idea. As Raudrive mentioned, this should include testing in noise. If you qualify, one of the biggest factors that should impact your decision is how much you want to hear and how hard you’re willing to work at it. From the subject of your post, it sounds like you want it very much.

Those “No responses” above 1.5k scare me though. Even where there is a response on the English test it is so far down it doesn’t give much room. Freq shifting and for sure.

WH

There are professionals out there who can better evaluate your situation and give you advice? Would you come to a public forum and ask members if you need heart surgery. You’re only going to get three answers here. Yes, no or maybe. With no guarantees

In reply to @Raudrive

Hi, I am counfused with your comment. I am in US, the and audiologist told me last week that I am a candidate, so they set another appointment to make a long test.
I´d like to know why are you saying that I am not a candidate.
By the way, have you seen both ?
Thanks for your comments!

In reply to #7

Hi, I gave up to hearing aids some years ago. I tried several (the best brands) and no one helped me to understand in noisy situations. At the end of the day it was more the annoy than the benefits (I ended up buying hearing aids that I used for about three years…they are in the drawer for good).
I don´t have any hope on hearig aids.
Thanks for your comments.

In reply to @hass5744

Hi,
As I stated in my main post, I have underwent two (in Spanish and English) and I have visited a as well.
But regardless what specialists can say, I want to hear life experiences and opinions from people using cochlear implants because I´d become one of them (if I decide to do it).
Nobody understand better hearing loss than people with hearing loss, even audiologist of doctors don´t tell/know the reality, I learned that when I went to try hearing aids some years ago…they told me many things, but at the end of the day I was using the hearing aids and the day after day wasn´t the way doctor had told me.
I ended up spending a lot of time and money for nothing.
Thanks for your comments.

In reply to @cochleargonzalo

Yes, I looked at both .
50% word understanding is the break point for as far as I know. We have members here that were not candidates from this % that went on to be tested in noise and that got them into candidacy for CI. That is why I mentioned getting tested in noise.
You are getting lots of help from the forum. Let us know how your CI candidate appointment goes.
Good luck

Anytime you get hearing aids it usually takes the brain a couple of weeks to adjust to the aids, not a day. You have to also remember that aids don’t return your hearing to normal. There are a lot of compromises. Being profoundly impaired it doesn’t seem to me like you given aids much of a chance. Implants are surgery and usually require a year of rehab and there’s no guarantee. Stop trying to rush things along. There’s nothing that will return your loss to normal. Aids help they don’t fix . But you certainly gave up on the aids quickly. Try the aids again and give it a chance. Never rush into surgery. And remember. People telling you their experience doesn’t mean you’ll have the same experience. Now the implant people can attack me. I don’t care. I’m just in trying to be helpful

Edited
@cochleargonzalo said:

The results were interesting (I suspected that), the hearing loss graphics are pretty similar, however the word recognition outcome are way different. The English word recognitiion L 16%, R 12%, in Spanish L 60%, R 52%. (I learned English as a mature adult when I already had hearing loss, so I never understood English normal).

On what basis eligibility would be taken into account (among other criteria), is it on OP’s English or Spanish WRS?

In reply to @cochleargonzalo

@cochleargonzalo said:

no one helped me to understand in noisy situations

I’m adding my 2 cents worth. Understanding in noisy is the holy grail searched for by all hearing impaired. Most if not all persons on this forum have trouble in noise. I personally understand very little in noisy situation. If speech understanding in noise was the test for , I would qualify too. Maybe looking again at hearing aids would be useful for you. The hearing aids of today are far superior to the ones of the past.
Dan

In reply to @cochleargonzalo

@cochleargonzalo said:

Hi,
Could you explain what you mean ¨it doesn´t give much room¨?

You have almost no hearing (indeed, if any, given no response) in about half the speech banana. If there is really some hearing there, above 1.5khz, the range in volume between “barely hear” and “that’s too loud” will not have enough space to fit in everything that normal hearing has between those bounds.

Hearing aids typically compress the normal range into what that range is available to you. But if there isn’t enough range between barely there and too loud, then you need to move those frequencies down to where you hear better. Everything gets scrunched down. Maybe that would work for you. You’d need a good hearing care pro to make it work, and probably need to do rehab to learn how to hear with it.

I wish you the best. I’m an engineer, not a hearing care professional, so seek good counsel from those in a place to help you decide on vs .

WH

In reply to @hass5744

I tried the most advanced and expensive four, five different hearing aids in the market, two of them for a week, and nothing worked out. But I finally decided to believe the audiologist and gave them a shot, I bought and used them for three years without any improvement.
Then two years later I tried another (US$8.000) hearing aids for a week, with same result.
After that I gave up on hearing aids.
In the last two months two audiologist and a have told me that hearing aids are not going to help me because I have lost cochlear hair cells.
I have strong opinion about hearing aids, but it is based on facts.
Thanks for your comments.

Yes, I understand that.
I haven´t taken any decision yet, I am researching, however hearing aids can´t help me, so what options do I have?

Edited

Your is virtually the same as mine was pre . I would suggest you go for the 2 hour CI evaluation. They thoroughly test your hearing in all aspects quiet & noise. Once you have had that done, you can choose to continue on with getting a CI or just put it on hold until you feel you are ready to move on. Just don’t leave it until you can’t hear. You will get a far better response from the CI doing it sooner rather than later.

Your audiogram doesn’t mean an awful lot, its just a guideline to the Drs. IMO it’s how you cope in the real world that’s important. Think about your work place, how well do you hear your colleagues? Can you hold down a conversation with family? In meetings? Can you hear when your on the phone? When socializing with a group of people? In a restaurant? Have you isolated yourself from friends because you can’t hear what they are saying? Can you hear the cashier when talking? All these real life situations are what’s important.

It’s a very hard decision to make to go ahead and have the CI op. Just keep in mind, it’s a big commitment to make as you will have a lot of rehab to do daily after the op. That’s if you want to get the best outcome from the CI.

Whatever you decide please keep wearing your hearing aids regardless of how helpful they are. It means you are stimulating the nerves so they remember what speech sounds you can hear. It doesn’t matter if you don’t understand what your hearing. Just keep wearing them.

Good luck to you which ever way you choose to go.

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