I want to hear, I want my life back!

Cochlear Implants
#50

Providers update. I emailed and asked them for a representative in Spanish (my mother language).

  • Advance Bionics: they responded next day, very responsive representative (bilingual Spanish/English). A few days later we had a video call (Zoom), she responded all my questions for almost 90 minutes. Afterwards she also forwarded me links and additional information, and provided me the phone of a bilingual implanted person to talk to.
  • Med*El: they answered in English next day, and after I answered immediately, it took a week to receive next email, just to read an excuse…now still waiting.
  • Cochlear: I email them twice, not answer received at all.
    I still have the CI test on Nov 15th.
    I’ll keep you updated!
    Thanks
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#51

Here in Australia we have to personally ring Cochlear. As you say if you email them they are exceptionally slow to answer. By making the phone call you get to speak to them immediately.

Good luck on the 15 November… it’s a long assessment of 2 hours, with no breaks. Take a bottle of water with you.

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#52

That works if you can use a telephone.

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#53

It is on Zoom, so I can see her lips. My daughter will be besides me as well.
Thank you

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#54

I don’t know how your CI centre works but if you haven’t worn Aids for a number of years, you may be asked to wear them for a period of time to determine they don’t actually work for you.

My CI centre makes you wear them for a minimum of 6 months before they’ll do a CI evaluation.

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#55

Hearing aids never worked for me, but it’s true that I haven’t use them since 2014 or so (I also tested new ones for a week in 2015 with same result).
I recently did two audiograms and the audiologists said that hearing aids won’t help me.
The ENT didn’t ask me to use hearing aids either, however I’ll wait after the CI test is done, maybe he ask me for it then.
We’ll see…
Thanks for your comment.

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#56

Same here @Zebras, we have to wear them for 6 months. Even babies with congenital hearing loss have to wear them for 6 months to see if the respond to sound.

Even in the evaluation I had to wear mine for several parts during the evaluation.

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#57

I have similar loss in my left ear. I am somewhat borderline but do qualify for a CI and I am scheduled for Nov 29. I think it was Raudrive who commented about the risk and possible regret if something goes wrong with CI surgery and one ends up with no hearing solution. That is my main concern, since I still have hearing in my low range. I have a history of getting skin infections after surgery and am allergic to sulfa antibiotic, so my surgeon referred me to infection disease for a consult and we have a plan to minimize the potential for infection. Fingers crossed.

Deaf Piper alerted me to the short electrode when I first asked CI questions, and I appreciate that! I did a lot of research as you are doing - zoomed with all companies, and decided to go with AB. If my surgeon retains my residual hearing I can use the acoustic ear hook attached to my CI to pick up my remaining hearing. I will have a standard length electrode, not short. Then the CI will pick up in the upper ranges where I have profound loss. I will use the accompanying hearing aid for my non implanted ear.

Lastly, I can’t imagine having this hearing loss and having to “hear” in my non native language. I live in far southwest Virginia and the country southern accents are quite strong. I am from the northeast, so I didn’t grow up hearing the speech that way. It makes my hearing loss even harder because the words are not as familiar, so in a small way, I understand what your challenge must be. You deserve to hear as best you can, so if a CI turns out to be your choice, you have our support. Keep us posted.

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#58

Hi @joanhawsey
Thanks for sharing your thoughts. I hope you don’t mind to tell me a little bit more about your experience until now. :smiley:
When you asked your ENT about the long/short electrode, what did he/she say about it?
I am still on the process of comparing companies, what made you decide on AB?
Did your surgeon have any provider preference?
My biggest concern is also being totally deaf after surgery, but I am also worried about the situation of “re-learning” English…
You are very close to your dream day, imagine being able to participate in group conversations, watching TV without subtitles, birds chirping, running water, and understanding kids?
Good luck to you, your magic day is pretty close!

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#59

Sure. I started wearing hearing aids a dozen years ago and put them in when I wake up and take them out when I go to bed. They help but it’s not perfect, as you know.

When my left ear tanked my first AuD discouraged the idea of a CI- she thought I was not bad enough yet. The ENT also said I should wait. However, when I did research I realized neither of them are up to date on the progress CIs have made. It is not longer a “wait until you can’t hear at all” decision. I saw another AuD who works with a university and she put me through to Vanderbilt which is a leading CI center.

The surgeon at Vanderbilt had no brand preference at all. Said they all do the job if the patient puts the work into rehab. He also encouraged me to get it sooner than later while I still had some natural hearing to help the rehab. I also don’t have any other health issues which he said can factor in success. He indicated about a 50/50 chance that I would retain my residual good hearing post surgery.

My new AuD who works with a lot of CI patients said the short electrode is an option but hearing generally gets worse, so if I would lose what good hearing remained in my CI ear, I would have to be reimplanted for the CI to help on my lower frequencies.

I believe all the companies have the option to use an acoustic piece to help if you have residual hearing left after surgery. I chose AB after researching because I like that they are part of the same company that offers Phonak HAs and they have an HA that pairs directly with the CI. I also understand that AB electrode system has extra capacity to handle new advances going forward. I don’t understand this myself but have seen it in some research. I also like that I won’t have to use a separate accessory to have hands free blue tooth to my CI and HA. AB does this well. They do not offer and off ear processor option, but that is not important to me.

I too worry about being deaf for a bit after surgery, but I will have my other ear with hearing aid until things start to make sense with my CI. I worry more about NOT getting the CI and having my “good” ear tank suddenly like my bad one did.

Sorry for the lengthy response.

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#60

I love your long response!
Thank you so much.

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#61

Just had a patient in today who was activated 3 months ago. They’ve gone from 8% to 80% word recognition in quiet already. Huge outcome. :slight_smile:

No residual hearing, however.

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#62

WOW! Neville that patient is off to a fabulous start.

Everyone gets all uptight over wanting their residual to be preserved. It will decline naturally as the recipient gets older anyhow, so I can’t see the point. IMO having your residual preserved is not what it’s cracked up to be anyhow… I know some people will disagree with me here, as their residual means the world to them. :woman_shrugging:

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#63

I think the desire for preservation is that in case the CI fails rather than in case it works. Particularly as CI candidacy is extending out to people with less severe losses. My above patient, for example, had just a moderately-severe hearing loss. So while speech clarity was very poor, that ear still provided significant sound awareness.

I’m also just interested in residual hearing because I’ve seen some cases lately (out of Colorado, I think) in which there was absolutely no loss of hearing post-op. I’m quite curious to what degree this depends on the skill of the surgeon versus, say, the anatomy of the patient. How common is it becoming to see this sort of preservation? Is that Colorado ENT just an absolute superstar?

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#64

I think it is true that nowadays there are more people qualifying for CI than before.
Many people with severe to profound hearing loss that formerly just had hearing aids have now access to CI.
I’d bet most of these guys have resigned to have an isolated life, because they thought they didn’t have any other options (like myself).
I don’t know how everyone feel about hearing sounds, but from my perspective just hearing sounds without clarity to hear and understand words is overrate (excuse me for the expression).
Yes, I’d like to hear birds, running water, and all kind of sounds, including music…but if I’d have to chose I’d exchange all that sounds for just speech understanding (hearing aids are not giving me that).
So, if I hear some sounds but I can’t have a normal conversation with my daughters…I rather prefer to take the risk if chances of speech understanding are high and cons are not ugly.
I think many people feel it like me, anyway this is perfect platform to express your opinion as I’ve done it.
My two cents

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#65

I think Neville hit it on the head about people being apprehensive about CI. It’s the possibility of complete deafness from CI surgery and the CI failing.

When a person’s hearing gets bad enough and that person wants to communicate with family, friends and not lose a job due to hearing, CI can be very attractive. The odds are high for great results.

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#66

Neville, interesting to hear such quick positive results from someone who went for the CI earlier than later! I too wonder about your surgeon question. Mine claims 50/50, but given he is at Vanderbilt I suspect he is lowballing me?? I was offered to be in a study where they take another measurement during surgery to see if it helps retain residual. I declined because it is far away and would mean lots of trips back with no certainty that I would be chosen for the measurement.

#67

Yes, I’m really pleased for this patient. I just saw another newly activated (5 months) patient yesterday who is definitely not getting the same clarity, but who also hadn’t worn a hearing aid in the implanted ears for years in advance of the surgery and is still very pleased with the improvement that they have gotten in access to high-frequency clarity paired with the good low frequency hearing they still have in the other ear.

I think anatomy probably plays a very big role in residual hearing, though. The first patient I mentioned had a history of Meniere’s and I would guess that the abnormal fluid pressure in the cochlea associated with Meniere’s probably makes it much harder to preserve any residual hearing. Similarly, if one’s hearing loss etiology means that one has significant cochlear ossification, that’s going to make the surgery much harder.

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#68

@cochleargonzalo wish you all the best for your evaluation on the 15th. Good luck. :four_leaf_clover:

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#69

@cochleargonzalo how did you go with your evaluation for CI?

1 Like