An old friend of mine contacted me a couple months ago about CI.
Today he and his wife came by to visit, haven’t seen him in probably 15-20 years.
He wears the Cochlear Nucleus 7 on one ear, was activated about 5 weeks ago. At activation he had almost 20% word understanding, pretty amazing. At his 4 week mappings he learned his word understanding has not improved much. He wanted to talk to me about this.
As it turns out he has not been doing his rehabilitation with his CI like he should. He actually takes the processor off at times due to frustration and just uses his hearing aided ear.
As it turns out he had not been told how important rehabilitation is by his audiologist. He also has not been educated about how to use the Cochlear Nucleus app. to help improve his speech understanding.
We talked about different ways to practice hearing with the new CI that may help him. His wife got involved with this conversation and whole heartedly wants to help. I suspect his hearing will improve dramatically improve with just a little practice.
After reading about different members here on the forum mostly having great luck with CI but then a few not so much I thought about sharing this experience my friend is having with his new CI. Hopefully it will help someone understand how important rehabilitation is for improved speech understanding.
It’s hard to say that my response to my CI is normal, it’s not because everyone is an individual and very different. I worked hard at rehab and got great results, for which I’m very grateful.
I can understand his disappointment at not progressing as he would have liked. Especially as he could understand speech on activation.
Rick what rehab suggestions did you give your friend? My local Library app was my favourite rehab streaming books. I’ve got this list of rehab app suggestions for anyone whose interested in looking into these apps.
I’m very interested to know how much time you put into the rehab, say each day. I work full time - and have to communicate on the job, so I would have just evenings to do things like streaming and rehab. Would I be better waiting a couple of years until I retire so I have more time for rehab?
We are all so different.
We each started our CI journey differently and we each learn at different paces.
Your question about rehabilitation time is difficult but I believe it’s answerable.
The trick is learning how to learn.
This may sound funny but it’s true. Learning how to learn is so important in so many ways. We each find different ways to learn. Some read, some need visual, some need to hear, some need hands on, etc
For me it was using a TV streamer with closed captioning turned on watching old TV re-runs I knew by heart. I pretty much knew the words and I remembered how the actors and actresses sounded. By reading lips, reading the closed captioning and hearing all the new sounds with the CI I learned big time.
But, we are all different. Each of us have to figure out what works best. We have to understand how to learn. Some use podcasts, some use recorded speech while reading the words. I hate to read, I am dyslexic. So visual TV worked great for me.
@joanhawsey , if your hearing is holding you up in life and you can get a CI, there is no time like the present.
Such a thoughtful answer. Thank you so much. I will ask for a referral to Vanderbilt and see what they say. I am thinking that the constant interaction in different modes - phone, zoom, in person, with background noise and without - that happens in my work day may actually be helpful. I am worried about enjoying music - my son sings.
I told him what worked for me and mentioned the Speech Banana app.
The apps you provided might help him too. If he is the reading type of person what worked for you might be great for him too. I will ask him.
Thanks Sheryl.
Good topic. I was warned prior to surgery that SSD (Single Sided Deafness) implant recipient results are all over the place. Some have good results and some not. After my own research, it became very clear that the ones who benefited most are the ones who continue to work at recovery. I would equate this to a stroke/paralysis recovery… It is up to the individual to put in the effort to learn to walk/hear again. You need to relearn how to walk/hear. It is not going to be easy.
Based on this… I spend several hours every day isolating the CI in order to receive maximum benefit. In the beginning, and for roughly 6 to 9 months the CI made hearing harder instead of easier. The noise coming from the CI would come in as just that…noise. The closest relatable example I can use is - like trying to have a conversation while standing next to a train. Not fun. It can be very tempting to remove the CI to have a clearer conversation, and on a few occasions I did just that. I would also have headaches related to the CI and volume.
It is a long hard journey, but my efforts are paying off. It can be done. I am now able to have isolated conversations using my phone. It is not the same as a normal hearing… but hey, it works. It’s a prosthesis. An amputee hand or leg will never be the same as a real hand or leg, but the prosthesis helps. Hope this helps anyone trying to relate…
Kind regards,
Dave
Thank you so much for your post. It is very helpful for others looking to get CI and maybe a few who already have a CI.
We have one member having a tuff time, can’t remember who it is now. And yes, they are SSD.
When I was activated on my first CI I took the hearing aid off my other ear within a week or two, never put it back on. For me it was the right thing to do.
Joan I had just retired when I had my CI. I put in 2 hours every day into streaming book through my iPhone. I found the local library app the best for me as it was free. Where Amazons kindle for streaming is expensive. I was reading a book a day and Amazon became very expensive for me.
@nelhop your very welcome. Don’t forget your local library app, for me that was the best.
Joan my surgeon did my good ear, as he said I would get the best result. Simply because I had only just lost my high frequencies and my brain wouldn’t take long to recognise the sounds. That proved to be very true, I understood speech on activation.
Good luck.
@DWol999 I’m so glad to see you are getting a good result. Do you have an aid in your other ear?
I do and hearing on the iPhone in bimodal is a hell of a lot easier with an aid. My aid is still I 2 pieces, it doesn’t matter what I’ve tried it the tube keeps on slipping off the ear hook. It’s been 5 weeks now without my aid I will be having one big celebration when it’s fixed… On the up side it’s making me use my CI ear only. It’s showing since I’ve slacked off on the rehab my hearing has gone down a bit. It’s now after all these weeks of just my CI my comprehension is improving again. So the old saying if you don’t use it you lose it is very true for me.
I need a hearing aid on my “good” ear, but as of now I can’t afford it. I am limping along with my CI and questionable hearing on the good ear. I have been listening to all of your suggestions with having a dual-paired aid and CI and you have great advice. I agree this would be optimal, but I just don’t have the funds for the high end hearing aid that would be needed.
I am leaning toward the Bose sound control hearing aids which are currently selling for ~$850. With a little luck I will have enough money to purchase around Christmas time. This will leave me with singular hearing per ear of choice.
Too bad about the ear hook slipping. I wish these things we more affordable, then we could all have spares when they break!
Nope, not for free. I have Kaiser insurance, and they will only service a hearing aid that they sell.
I also looked into purchasing through Costco. Once they saw that I had a CI, they didn’t want to have anything to do with me. They wouldn’t even sell me a resound HA with no programing.
I have had a CI for 1 1/2 yrs with very little result or benefit. I agree it is all about the work you put in. I wish the audiologist had spent the time to go over all of this before the surgery. I would have decided against this. I have single sided deafness and had difficulty knowing where sound is coming from . I also can’t understand anyone when in a crowd. I have normal hearing in the other.I believed all I had to do was wear it which I did for 12-14 hrs a day and my brain would get used to it. Not true. There was never any mention of auditory rehab, and the use of streaming devices to help.I don’t even own a cellphone or I pad. I am not tech savvy and I told the audiologist this.While I may have met criteria(I was profoundly deaf in the Rt ear) I was not a candidate. trying to understand words is draining . I feel I can’t understand anything even with my good ear so I now have stopped using it.I had tried the exercises but became frustrated . This was not started until about 8 months after activation.My advice is to anyone doing this be prepared for a long commitment to learning how to make it work and make sure your audiologist explains all this Prior to surgery.All I wanted was something to equalize sound but the Dr thought this was a better choice. Now I am left with the same problems plus an implant that has caused me to loose my sense of taste and permanent numbness on the implant side
I believe the member just replied. @kathykillea04 I am so sorry the CI is not working out for you.
Could you tell us some of the things you have tried as rehabilitation?
Thanks
@kathykillea04
Kathy it’s not to late to do Aural rehab or any sort of rehab if you were so inclined. You should still get some improvement. Did you do any sort of rehab? You will find a list of apps above in this thread. Also if you like reading or listening to audiobooks get your local library app and stream books to your CI.
Good luck.
