CI questions

Cochlear Implants
#81

She didn’t do that. Was she supposed to or because i’m so deaf she probably thought it wasn’t needed?
After the beeps in the booth, she did speak to me into the headphones. I was still looking away and told her I hear her voice, but have no clue what she was saying. I then turned my head to look at her and I read her lips as she spoke and she asked me “You can understand what i’m saying only if you look at me?” I said “correct”. And that was that.
I wonder if she thought word recognition wasn’t worth doing at that point…or was that still supposed to be done? Twice now i’ve had it skipped over. Last time in September and now today…so i guess i’m just too deaf to have them bother with it?

EDIT: Under “word discrimination” on the test attached, it says what appears to be “SAT”. Does anyone know what means?

#82

Based on the audiogram it looks like the system isn’t capable of testing someone with loss as profound as yours. It is rather remarkable that you hear anything at all. I am pretty sure the note CNT for your speech recognition threshold (SRT) stands for could not test.

The good? news is that if you decide to go for the CI your hearing scores make you a shoe in for the first step in candidacy.

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#83

Her notes are already in my patient portal online and she wrote:

"Patient to follow up with physician for review and medical management. Recommend hearing aid evaluation after physician review and medical management.Patient is more interested in a hearing aid for sound awareness at this time, but I do think he would benefit from a Cochlear implant evaluation to gain information for future decision making."

So yeah, they do seem to agree the CI is the best route to take with my loss and that’s great if/when I decide to do it.

EDIT: I just noticed it also says CNT on the right side of the test under “speech understanding”, so it very well could mean “could not test”.

My hearing loss is very weird. I can hear loud noises, even a loud car or truck go by if i’m outside, but words from voices are completely shot. I’ll hear the voice but there’s absolutely zero clarity.

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#84

Under “word discrimination” on the test attached, it says what appears to be “SAT”. Does anyone know what means?

This might help.
Sure sounds like you need to be specific and ask for a CI evaluation.

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#85

Well for now my main concern is the hearing aid, but they do feel a CI is best and they will discuss that with me on 12/13. If you look at the test where it says “Recommendations” it says 'hearing aid trial vs CI eval". So I believe both options will be discussed in depth on the next visit.

Does anyone know what the “110db” under Masking means?

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#86

I think you can for get the column headings, it is one long note, it translates to:

Could Not Test Speech Awareness Threshold Left Ear at 110dB.

Basically, the Speech Recognition Threshold is the volume it takes for you to recognize 50% of the words tested. The note is saying that you couldn’t be tested for that because you recognition of speech requires a volume at the very upper end of what the system can produce, so 50% is impossible for it. So the rest of the columns have no meaning.

A hearing aid might give you sound awareness but it is never going to give you speech. And even that awareness is pushing the limit of the aid. A CI should help assuming that you qualify medically (there are some forms of deafness a CI can’t fix) but you will probably need a lot of aural rehabilitation because you are not used to anything approaching normal sounds. That is not meant to be discouraging, just want to make sure you go in with realistic expectations.

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#87

Thank you for the explanation. It makes sense to me now the way you explained it and i’m not discouraged in the slightest. After 16 years of being profoundly deaf, i’ve long accepted it and am comfortable with it. Hearing absolutely nothing when the ear infection was what scared the hell out of me. I realize i’ll never have speech clarity again even with power aids, but the awareness sounds a power aid brings is more than enough for me. As long as I always have that, i’m good.

As for the CI, if and when I make the leap for it, I do realize there will be a lot of work to relearn sounds again, especially for speech comprehension, but after reading so many successful rehabilitation stories from others, i’m hopeful that i’ll be another successful case.

Thanks again for the audiology explanation. I look at all those abbreviations and it’s like a foreign language to me lol.

#88

Has anyone bought their hearing aids online? The Naida Paradise P30 that I think is good for me is only $1,249 at a site called Ideal Hearing Aids and it includes programming from my audiology test.

I figure if I try the aid out at my 12/13 appointment and like it, i’ll just buy it from there instead of the $1,700 they want at the doctor and save $450. The site seems reputable and A+ BBB rated. I may contact them tomorrow for more info, but curious id anyone here has bought their aids that way and how was the experience?

#89

Good luck to you for tomorrow!

#90

Thank you!

#91

Have had severe hearing loss(deafness) x 7yrs. ENT Dr suggested a CI to help since I couldn’t tell where sound was coming from or could I understand speech in a crowd.It has been 13 months since activation. Most changes occur within the first 3-4 months I was told. Well here I am. Still no word recognition in crowds or can I tell where sound is coming from. I have had numerous mappings(adjustments) I wear it 12-14 hrs a day. I only have 44% sound.At this point it should be at 60-70%.I have had a increase in tinnitus,lost most of my sense of taste and my face and ear on the implant side is numb. I am also suffering from “hearing fatigue”. Knew nothing about this until I did research and wanted to know why I was so exhausted all the time. My PMD did a workup to rule out any illness. Blood work, scans etc. Everything normal . The CI also requires the use of alot of technology to obtain the maximun benefit. There is also auditory rehab that also plays a big part. None of this was explained to me. I am not tech savy to begin with. Needless to say I should have done alot more research and I expected the audiologist and surgeon would have done alot more explaining. Right now I am considering having it removed but not sure Ins. will pay. The rate of failure is very low,everyone is different.I am one of the failures! but then again I lost my hearing after my first ever flu vaccine 7yrs ago. Hearing loss is listed in the CDC website as a possible result of the flu vaccine. I suggest you write down a list of ques to ask, but do ALOT of research first! Good luck.

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#92

Hi Kathy,
It sounds like you have SSD - Single sided deafness?.. Or are you deaf in both ears?
I gathered that from your reasoning -“I couldn’t tell where sound was coming from or could I understand speech in a crowd”

#93

deaf in my Rt.ear only

#94

Our implants and activations are pretty close.
I see you also use the Cochlear Kanso2 processor.

It saddens me to read your post about your CI experience.

My tinnitus is worse after the implants as well but the tinnitus goes away as soon as the processors are put on. I believe this tinnitus is from my right side but not sure.

My sense of smell also went away from each implant but came back after a couple months, no numbness to my face. The Covid vaccines also took my sense of smell for a couple weeks after each shot but came back.

Have you considered trying a different audiologist?

#95

Thanks Kathy!
I am also a SSD CI user. Activated 13 months ago. I think we are a new breed of CI users and it is important to note the differences for our experience vs people who are deaf in both ears. From my experience and research, SSD users have a much steeper learning curve when training the CI. It is almost as if we are fighting the good ear while learning how to interpret the electronic signals. Our brain is not fully isolated to only CI stimulus. If we were fully deaf then all sound stimulus would be the same, and training would come quicker. For this reason, it is important to be even more patient with your progress.
One thing that I would like to recommend is the Bose “Hearphones” now replaced with Bose sound control hearing aid. For noisy situations (restaurants/ movies/ ect) put it in your good ear. It will allow you to use noise cancelling (this is a lifesaver for these environments) and at the same time enhance voices. I have been using this product for 3 years and it really helps. At the same time turn down the sensitivity and volume for your CI (or turn it off). My CI is useless in noisy places.
Kind regards, and hopefully things will improve…
Dave

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#96

My problem is that I still do not have any word recognition. You were right. I have 2 different sounds competing. My original plan was to have a BAHA system. It equalizes sound. The Surgeon thought CI would be better.If I close off my good ear all I hear is static.I would love to try the Hearphones but without any word recognition this does not seem to be an option. I have been meeting with my audiologist as well as the audiologist from Cochlear.My reason for seeking help after 6yrs was that I could not tolerate noise or tell where sound is coming from leading to alot of isolation. I have been patient with my progress for 13 months but there has been no progress despite numerous mappings. You are so right that SSD and CI usage is much different than if both ears went deaf. I don’t know if you suffered from "hearing fatigue"This is also difficult to deal with. I thought this would have gone away by now along with the loss of taste,ringing and the numbness in my face and ear.I will be seeing the audiologist 12/6 along with the cochlear audiologist for another hearing test and mapping. I was also give an Integrity test to evaluate the implant to look for any issues with that.Everything was functioning properly with the internal components but I still have no word recognition even with the microphone. I will speak to them about the sound control system. Thanks for the reply. I felt that I was the only one who had a hard time with this.

#97

Good stuff Kathy,
We all go through this a little different, but we can all relate…
A couple of clarifications – the Bose system acts similar to BAJA. The one I use “hearphones” will take sounds from both sides and project them to both ears. This is exactly what BAJA does. I am not sure about the new Bose sound control hearing aid (I haven’t purchased it yet). But it may also do the same.
I use the Bose system exclusively for my good ear. It has no benefit for the CI. It helps tremendously with fatigue. It does this by lowing background noise (noise cancelling), and improving spoken word. I will give you an example of how it helped me: My wife and I went to a Dim-sum Chinese restaurant. We were seated at a round table with 15 people in our party. The restaurant had an open floor plan with over 100 people in it. With my CI and nothing else I would be completely overwhelmed and not be able to make out any conversations. I turned off my CI and put in my Bose “hearphones” and was able to talk to everyone at my table comfortably. It really helped!!
As for the CI… I train by using “Blu-tooth” from my iphone (sorry to get technical). This allows isolated sound only to the CI. I think this is important when training, otherwise your good ear will always hog and translate what is going on. I started with music, and initially I was only able to make out the rhythms/beats of familiar songs. I did this for many months, and eventually began working on voices (that I couldn’t understand) but continue to listen and try. Today it is getting better, but I still have a long way to go.
My motivation is that I am losing my other ear slowly, and I need to get the CI going for when I have complete loss. Maybe this is not you, but I have experienced complete deafness a few times and it is very difficult.
I am sure you have made some progress since activation, or does it sound exactly the same? My approach is to use both BAJA and CI in different settings. In loud environment I go BAHA (using my BOSE hearphones) in all other environments I use my CI.
Kind regards,
Dave

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#98

I was only at 16% hearing after activation at 11 months then it went to 40% at 13 months. still with no word recognition.I am also not tech savy. I was never told that to get the most benefit out of the CI I should use all the main streaming devices they gave me.I don’t even use a cell phone.I had to go buy an IPad to do the exercises but with no word recognition it was frustrating to say the least. never was able to get the answers correct.This is why I was using the microphone to mainstream TV,radio and 1-1 conversations but again I was unable to understand anything. I worry about losing my hearing in my good ear since I depend on that for hearing anything.i wish that my audiologist would have suggested your approach. It sounds like this could be a solution for me.I am a college educated women with 30+yrs in the healthcare field and I can’t seem to master what others in cochlear website seem to get it in the first few months. Thanks so much for your insight and I will bring this up to my audiologist otherwise I am left with the option of having it removed if ins. will pay for it.I will give it a try for 6 more months but I am starting to feel that it is not worth the anxiety or frustration and the depression. I don’t think the audiologists or the Surgeon know what this is like.I am tired of hearing it will get better when others see results within a few months. I was told no to expect alot so I would not be disappointed.So I did’t but I expected some change. Thanks again

#99

Going from 14% to 40% was a big improvement. My first few weeks on the first implant was literally static. Slowly the lower frequencies started making some sense. Over the next couple months clarity improved from the lower frequencies up into the upper frequencies.

You mentioned directionality. It has taken almost a year to start getting directionality back but it is very nice. You also mentioned speech understanding in noisy settings. This is still tuff for me and most anyone with hearing loss. I do much better now with implants than before the implants.

Did you get the Cochlear TV Streamer? It can be used with the iPad I believe. As mentioned by Dave, forcing your implanted ear to hear all the new sounds will help you learn speech. Your good ear sure may have shut out the implanted ear brain wise. This concept worked very well for me.

Getting a smart phone that is compatible with your Kanso2 would give you the Nucleus Smart app that would allow you to make changes to your processor. This alone could really help with getting your tired or having headaches not to mention helping you learn speech.

Good luck

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#100

I agree 16% to 40% is a significant improvement. If you can figure out the direct streaming to your CI, you may find that you can recognize more than you think…
All of this is very hard on the psyche. Don’t be afraid to get a therapist (if you don’t already have one) to help with all the mental health stuff. I know they have helped me…
Kind regards,
Dave

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