Suggestions for Caroline? 6 months-still struggling with word recognition

[Tim]

I'm posting this on behalf of @Caroline.  She'll chime in but asked me to lend a hand by creating a new topic.

Caroline and I are CI SSD twins - having had surgeries and activations within 36 hours of each other despite being on opposite sides of the world (I'm in the US while she is in Australia.)

We had our surgeries 7 months ago, activations three weeks later, and that is where our paths diverged.

I've had a pretty typical pattern of progress in rehabilitation. I am pretty happy with my progress but always looking to keep working on advancing it. 

On the other hand, Caroline just doesn't seem to be able to consistently resolve words yet.  She has had some difficulty with nerve pain but it seems like that has been addressed.  She had a couple of very upbeat post-activation posts where she seemed to have a golden activation.  Alas, it was really just the good ear doing all the work. 

Her Audiologist appears to be stumped as to her lack of progress and says to just give it time.  It isn't for lack of effort, she is putting in a lot of time into rehab. The Audiologist attributes it to a "lazy ear" - effectively the brain is just not processing the signal. 

In an email, Caroline said:

Quote

I saw both my audiologist and a speech therapist in June who completely changed things for me. I am not sufficiently technical but they did a completely new kind of mapping which seems to have just about sorted out the pain I was experiencing. However I am not hearing words any better. Diane gave me a lot of links to rehab. sites from Med-el and I find that all of them are not available in our region. I have sent messages to my audiologist asking him to query with the Med-el rep why this is not available to us.  Anyway I keep being told not to give up but am at a bit of a loss as to how to proceed as however much I do the Hearoes exercises etc nothing improves.

She has another appointment with her Audiologist later this month. I suggested lobbying for a post-operative CT scan and anatomy-based-fitting.  That might also be helpful for getting a better understanding of the nerve pain issue. 

While Caroline knows everyone's hearing journey follows a different path and speed, she is starting to get frustrated.  I feel a little guilty, I've done a dozen audiobooks with direct streaming to just the CI and she can't imagine doing even one.

Do others have suggestions or encouragement?  I know there are people with a lot more experience.

 

[Enegra]

When you say that the brain appears not to be processing the signal; do you mean that there is no comprehension at all or that it's unsatisfactory?

The outcomes and the speed of the process depend on the background; how long the ear has been a weak one and so on. If there's environmental sound awareness, then I wouldn't give up hope that the speech may come one day. Sometimes it's not so much about the mapping or going to great lengths with the rehab, but giving it a lot of time. Brains can be both amazingly fast and excruciatingly slow to rewire and you never know which one they are going to pick.

I have one ear that still can't listen to Audiobooks to this day, almost three years post activation. I have made a lot of progress, but when I was last able to use it (details on why it's temporarily out of commission in my own thread) while I could understand enough in a simple book without background effects, the concentration and effort required made me just turn off after a few minutes. In Zoom calls and such I rely on captions. I can get by on phone with that ear with family members and that's it.

Since I was diagnosed as a little kid that ear always had profound hearing loss, and in the 25 years I wore hearing aids it could hardly understand any words from speech. When I got the implant in 2020 the first two months I was just relying on lipreading. I recall complaining about six months in about not being able to hear consonants properly, or at least not being able to tell them apart. It took about year to get to the point where I could understand speech reliably even in quiet.

With a lot of time and small tweaks to the map I was able to progress; I thought that my left side was pretty acceptable minus the voice chat and noisy situations. My right side outperformed it in under a week in noise, so it doesn't sound very good, but on the other hand I have made all this progress from basically nothing. And speech is not everything, the music and environmental sounds were/are fine with the left side.

[John Schulz]

Hey @Tim and @Caroline,

I understand your frustrations of  the sound not being clear and pitches being off to some degree. Speaking from personal experience, listening to music might help the brain reinterpret sounds coming from the one side. Musical instruments cover a vastly great spectrum of frequencies and are pretty consistent from artist to artist. My advise would be to start out with only instrumental music and see how that goes. It probably will sound awful at first but it should pay off in the long run. In addition, I would try playing the song on the natural ear first, then both, then only on the CI side. Remember to take breaks when you start feeling fatigued.

Once you start tolerating instrumental music, I would start listening to song you know by heart. Music is a powerful influencer in the brain.

Hope this helps!

Edited August 8, 2023 by John Schulz
influences -> influencer

[Enegra]

Oh, and a question regarding the resources, how about Meludia? Are you already using it, @Caroline? The front page features a review from someone located in Australia, so it should be available there. It's mostly meant for music training, but allegedly it helps with speech perception too. https://www.meludia.com/en/med-el/

[Lauren]

All I am really offer is encouragement to keep at it. Don’t push too yourself too hard in active rehab. Getting the CT scan to confirm electrode placement is a great start, I just wish it was more consistent across surgical protocols. And as @Tim mentioned Anatomy Based Fitting that would definitely be worth going for.

[Caroline]

4 hours ago, Enegra said:

Oh, and a question regarding the resources, how about Meludia? Are you already using it, @Caroline? The front page features a review from someone located in Australia, so it should be available there. It's mostly meant for music training, but allegedly it helps with speech perception too. https://www.meludia.com/en/med-el/

I have to admit that at the present time I cannot make sense of music at all. I am struggling to get sounds into words but music is just impossible. I. have looked at melodia and will try and listen but I think it will be too much for me at present.

[Tim]

@Caroline It is so great to see all the encouragement.  Thanks for everyone's chiming in - this is part of what makes Hearpeers so good!

 

 

[Caroline]

yes I am so looking forward to chatting Thursday. Am having trouble working out how to reply to different people with their helpful comments and suggestions will be good face to face. What a great group

[Enegra]

@Caroline I would still give it a shot, it's meant to use as a rehab tool for all implant users. With Med-El account it's free for a year, so worst case you just lose some time.

When I was first activated I used Spotify a lot, starting with simple classics or songs I knew by heart. The music sounded quite horrible at the start, but I was able to gradually hear more of it. The goal is not to understand the lyrics - to be fair I still struggle with that years later - but to hear the melody and the pitches.

Sadly from a brief glance at the time for the meet, it's in the middle of the night for me (3 AM), so there's no amount of coffee that can help me attend that one. I hope it's okay if I just continue contributing through the forums.

[Dianna]

Hi caroline!!

Hey there, when i started rehabbing i was so into music training, lol. I used angel sounds for a while, and meludia. It is hard to "listen" to music or sacales but i found scales on spotify and played them all the time i could. Listening to the scales is really weird as some notes sound identical at first so i used all i could, its tiring, but second, third, 4th time the sounds did separate if you get my explanation. In angel sounds there are many different "courses" you can do that help you move forward. Also, i started with specific instruments like guitar or trumpet or flute. They are all kind of ugly sounding but get better on repeat.

Also, i rehab the ci only, sometimes with an ear plug in the unimplanted side.

I did begin with captions on the television, eventually turning off at about 3 months. I watch one channel alot, same shows with same narrator, familiarity helps. Some folks listen to same audio podcasts with same speakers.

Its tough and sometimes tiring, so glad to "unplug" at bedtime, i tell ya!!

Some of my time is spent outside listening to wildlife sounds, hummingbirds my fav. 

Make some notes on what sounds sound bad and take to your audi/programmer to help splain to them what is clear and what is not.

I still have trouble with background noise, ci and ha are not great at weeding out background noise, i need to get out more and experience more for training i guess, lol.

Keep on keeping on, the clarity will improve i promise!!

[Mary Beth]

Hi @Caroline

You can post replies here and we will all see them.  If you want to tag a specific user, type @ immediately followed by their username and a window will pop up.  Select their name from that window and it will turn red.  Then they will be tagged.

Remind us of your journey so far.

How long was that ear deaf before being implanted?

What are you able to hear and understand at the moment?  
 

Regarding speech- in my opinion the best app for speech rehab at the beginning is Word Success which is free for anyone.  Level 1 of its speech training does not require that we understand words, only that we recognize how many syllables were said.  It’s based on David Sindrey’s listening ladder and I have used his listening ladder with students for years with much success.  
 

Have you seen your audiogram recently after they tested you in the booth with beeps ?  Do you recall what that looked like?  That shows us the access we have to soft sounds in the speech range.  
 

1) imaging to confirm that the electrode array is positioned well

2) audiologist hooking up to their computer to confirm the electrodes are responding correctly 

3) booth testing to confirm access to soft speech sounds

4) daily rehab building up from recognizing how many syllables to then recognizing actual words (Word Success)

5) continued MAPping with audiologist and Med-El support to audiologist

6) wearing the CI all waking hours

These are my recommendations for success.

It’s important to have repeated success in listening to help our brain use the CI input well.  
 

I wish you the best Caroline.  If you want to join in our August 20th GoogleMeet, let me know.

[ERW]

@Caroline I am not as far in my journey as you are, but I think the previous suggestions are all fantastic! Music sounds terrible right now, but I miss it so much, so what I decided to do was stream directly to my CI one of my favorite bands and one of my favorite songs by them every day (same song). I then really concentrate on how it is supposed to sound. It’s really weird being conscious of my brain working through it, but it is sounding more and more the way it should. I picked a song that only has the guitar at the beginning and one that I am very familiar with. 
 

Don’t give up, our brains are amazing! Hope you will see progress in the near future.  Best wishes!