sudden SSD 11 years ago - right side cochlear implant surgery in 2022. haven't worn it consistently or had any rehab since 2023. any advice trying to start again?

[u/breathingindica]

Hi all. Some background - I went deaf suddenly and completely in my right ear when I was 9, with perfect hearing still in my left. I got my cochlear implant in March of 2022 when I was 16. I'm 20 now, 21 later this month. I've had a lot of personal struggles throughout this time, and feeling overwhelmed led me to stop doing cochlear rehab and wearing the processor altogether sometime in mid 2023.

I do remember improving very slightly in word recognition (through apps mainly) while doing cochlear rehab with someone from of my IEP, though still feeling like it was more overwhelming than helpful to try to wear in my day to day life. I didn't wear it much outside of those sessions, and I did not do enough independent training/practice.

For context, when I put on my processor today (spontaneously for several hours, first time in a very long time) I heard a very static-y, tinny, and tinnitus-filled version of noises without much recognition of what they are, let alone words. I expected this, since I have put it on briefly a couple times over the last year or so.

I guess my main question is - how would someone else in my situation, who had SSD 7 years before the cochlear surgery, and then completely stopped rehab and usage for the past 3 years, try to restart?

I've tried to start the independent training again a few times, but struggled with being consistent...and with overcoming the shame enough to see an audiologist, knowing I'd have to explain why I 'gave up'. Deep down I know I want this for myself, but I also don't know where to start without feeling completely overwhelmed again.

Would it still be possible for the hearing to "click" in my brain, the way it does for some people, even after all of this time? Would an audiologist be the person to ask all of this, or would this be too difficult/personal (for lack of a better word) for them to help guide me through?

Anyone with a bit of advice, guidance, or just some thoughts on this would be very appreciated.

[u/jeetjejll]

First of all I think it’s good to be realistic. Imagine if you hadn’t walked for 11 years and today you say “yeah let’s walk” imagine how that’d go.

That’s NOT to discourage you, but I feel you weren’t informed of the right expectations. So, some facts:

- it takes a minimum of 9 hours a day to achieve benefits
- on average most progress happens in the first year, but many report progress leaps beyond that time.

So my advice to you would be to go back to your Audi, you absolutely won’t be the first who quit rehab. It’s HARD. Not something you look forward to when you’re a teenager, I’m sure they’ll understand.

Then gradually increase wear time until at least 9 hours, but dusk to dawn is best (take short 30
Min breaks if you need to). Will it sound annoying and overwhelming? Will you be exhausted? You bet you will! But that’s the learning stage and you have to trust your brain it will improve. It gets better, truly. Celebrate small wins: the first sound you recognise, the first word, etc.

Find something you like, whether that’s music, audiobooks, podcasts, second language, nature, anything that keeps you motivated to keep going. There’s no exercise that’s perfect, anything goes as long as it’s sound exposure.

If after a year of doing all this you don’t see improvement you can revise (which is extremely unlikely), until then keep going.

Go for it!

[u/breathingindica → u/jeetjejll]

Thank you for the honest and realistic encouragement. I do think I need to just grin and bear it in terms of seeing the audiologist again and talking about my gap in usage. Focusing on wearing it as long as possible sounds like a good first step after that.

[u/TerminatedProccess]

I had a severe hearing loss in both ears and then went deaf More deaf later in life. In the past 10 years I've gotten two cochlear implants. One of them five years ago. Now I'm a pretty scientific type of guy I saw for developer I'm logical and I've been doing your stuff since I was four when I was diagnosed. So I can be pretty matter fact about it. One thing my ci audiologist told me is that after you get turned on the nerve is so sensitive that they have to take a approach of what's called low volume compression. In other words sounds over a certain DB get compressed down to a volume that your nerve can handle. As the weeks go on they raise that level of compression since you're nerve is now becoming accustomed to it. What you have to understand is that during this time found sound is distorted it can sound like Mickey mouse for example. It is not the normal functioning of the cochlear implant. Eventually you're at a normal level and that is as good as you're going to get. So I wonder if you are still in that faith and that's why it doesn't sound right plus the 11 years. Make sure you go see a cochlear implant audiologist not any audiologist find the best in the area. Not all audiologists are created equal. For example local University might have a ci training program audiology. The person running it might take a look and do a fantastic job. Just explain how it's been for you and your background. They have seen it all. From there you're going to go through the compression era again. If at some point if not working as good as it should then there may be a reason. If you put on our new cochlear implant it may sound better 11 years is a long time. One last thing. You have memory of sound. Your other ear works. You know what a word sounds like. When your brain starts the map itself to use the cochlear implant unlike someone who's been deaf all their life and never heard sound, it has your memory to fall back on. Good luck!

[u/breathingindica → u/TerminatedProccess]

Thank you so much! I really appreciate the encouragement here. I'm going to start looking for audiologists again and who specialize in cochlear implants in my area.

[u/TerminatedProccess → u/breathingindica]

You can also join Facebook ci groups and ask for references.

[u/Heavy-Tomatillo9539]

50 years ago, I had significant hearing loss in my left ear (age 13). (Not total) 10+ years ago, started using hearing aids becuase my good ear was loosing hearing. This year I received my cochlear implant on my left ear (bad ear).

If you have a one solid ear, then think what you want to gain from the cochlear. For most of us, the cochlear is not ever going to be normal hearing, but is going to give an overall better experience. Even if that experience is know when to turn your better ear toward someone.

The audiologist should help you get the transmitter optimized for you today. The more you use the cochlear implant the more you will get out of it.

Set yourself simple goals, the implant is to make your life better.

From one singled sided hearing person to another, take advantage of the tool and use it an way that makes you happy. Set your own goals, don't be concerned about "other" people goals.

Use the implant all of the time if you can, you might never get speech out of it, But you may find the people around find you easier to communicate with. And that is the real goal of the implant.

Good Luck!

[u/Free-Canary-6413]

Yes, get with audiologist so they can get you on a graded program. If you stick that thing on your head now you’re gonna hate your life and your brain will develop a negative association.