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Profound High pitch hearing loss and new hearing aids or cochlear implants

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I have pretty profound high pitch hearing loss. I am in the market to purchase new hearing aids. My main objective is to purchase aids that help me hear better in groups, restaurants, bars and loud places and just generally carry on a conversation in a car with road noise. I have had aids for about 16 years and have had Phonak, Resound and now have Oticon OPN 1s. I also want to be able to use an app (I have an iPhone) to adjust not only volume in each aid, but also adjust bass and treble. Also, being able to make an adjustment and save it to a GPS location so that when I arrive, my aids adjust to my settings for that location, would also be high on my list. On my last audiologist visit, my audiologist asked if I had considered cochlear implants. I hadn’t thought my loss was bad enough to consider an implant, but my hearing is getting worse by the year. Maybe I should reconsider her question. I also have an almost 90 degrees turn in my right ear canal that causes my to push against the side of the canal sometimes blocking the sound. So, looking at my from my last visit, what does the forum think about aids or implants at this stage (I turn 66 in a few months). If aids, which ones have all the things I want? I know nothing about cochlear implants and whether or not they can be adjusted by an app or if there were a new learning that I would have to go through to hear with them. I’ve done some research on aides and am looking at Phonak Lumity Premium or Signia Styletto AX Premium, but I am open to any suggestions. I do have insurance coverage up to $5000 so that will help tremendously. Please let me know what you think on this.

  Audiogram

250 Hz L30 R35
500 Hz L50 R55
750 Hz L60 R65
1000 Hz L65 R70
1500 Hz L85 R90
2000 Hz L105 R105
3000 Hz L115 R100
4000 Hz L105 R100
6000 Hz L100 R100
8000 Hz L95 R90
Word Recognition
Score L 32 R 24
Level 100 100

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Thanks for including your word recognition scores. Yes, I think a cochlear implant evaluation would be very appropriate. With your better ear your still able to understand less than 1/3 of speech even when it’s 100 . I think you’d learn a lot from an evaluation. If you really want to go with hearing aids instead of a cochlear implant, I think the Lumity would be a decent choice. With it’s Sound Recover 2 it could let you hear some higher frequency sounds. You’re unlikely to be wowed by the app however. My advice would be to seriously consider cochlear implant. There is a learning curve and it would require effort on your part but you’re relatively young and could have a lot of years of interacting with people left.

@cicada said:

Word Recognition
Score L 32 R 24

This is sure looks like you could get support for . If you have Medicare insurance they should be a great help financially.

The threshold for CI is 50 or less .
Getting a CI evaluation just might be a good thing to do. It will educate you about your hearing and what can be done about it.

Good luck.
I am bilateral CI.

I have a similar loss and i have my Phonak Lumity L90s set to move everything as low as i can. I have Sound Recover set to start at 900. I also have the 50db input bumped up. This gives me an aided word recognition around 70% at 55db. Keeps me from going Cochlear implant for now.

In reply to @MDB

Thank you for your reply MDB. When you said, “With your better ear your still able to understand less than 1/3 of speech even when it’s 100 .”, it made me sit and think about how profound of a loss of recognition that really is. I guess the audi caught me off guard with the remark and frankly it just seemed a bit scary to me at the time. I am not opposed to the idea per se but probably need to do research on CIs as I don’t know much at all about them. I suppose it is time to learn more. Going through learning to hear with CIs while still working in a hospital environment just seems dauting to me. I will be retiring toward the end of next year so maybe I could do it just as I was leaving the work force. I will check the forum for info and see how long that learning curve might be, and the testing should give me some idea what benefits I can expect from getting CIs. I really appreciate you and everyone taking time to explain things on this forum. You have always been a great help.

In reply to @Don

That’s very interesting, Don and very encouraging. Are you a DIYer or does your audi make those adjustments for you? How does that work for you in a crowd or loud restaurant? If I could get up to 70% at 55dB, I might wait on the but I still need to study up on them. Does anyone know if those settings are possible or a similar setting on the Oticon OPN 1s that might enable me to get there with the aides I have now?

I have very similar loss also and 16 years wearing . Doing well with the Oticon Real 1s. WR score is 55% @85db but i cope pretty well particularly at work. Most of my day is on the phone streaming Teams calls. Car road noise is a problem but the Reals do a little better than the More 1s I had before. Watching TV it depends what it is… for movies i rely on captions. I do think eventually i will look into but right now, I’m hanging on. All the best to you and post your experience regardless of what you decide to do.

I appreciate your response Raudrive. Being a bilateral , I’m sure you know much on the subject. I am going to learn more about them as I feel it will benefit me but was also in hopes that I might find an aid alternative for a few years to get used to the idea and really research it. You are probably right in that they would probably benefit me now. How long does it take to learn to hear with them? As you can tell, I really know very little about them. Do you have any advice for someone looking to go that route?

@cicada said:

I am going to learn more about them as I feel it will benefit me but was also in hopes that I might find an aid alternative for a few years to get used to the idea and really research it.

As you learn more about your hearing loss and you will see lots of information about its best to not wait too long. With CI you will get most of all the lost sounds back and more. This can be overwhelming if you have not had speech understanding for a long time. The longer you wait the longer it might be to get your speech understanding back.

Everyone is different about learning speech with CI. Some get it at activation and others it takes longer and then there are the very very few who never get it. From my reading a very high percentage will get 75-80% plus speech understanding with CI.

Spend some time in the Cochlear implant forum in this hearing tracker forum. There are a number of members who posted lots of details about their CI journey from the beginning on.

My journey was one CI until I could have a conversation on the phone with the CI only. Then I got the second CI done. It has been life changing for me.

As far as advice…get a CI evaluation. It will answer so many questions you have and more.
There are a group of members here with CI that are also very helpful.

My 2 cents. l have a similar loss and seem to get by with Phonak Naida using Sound Recover for now. I would have to get worse before looking at .

I have a different take. As soon as my left ear plunged into the profound range in the high frequencies, I asked about a evaluation. My just wanted to sell me hearing aids so she didn’t help me with the CI. I had to find a CI AuD myself and ask for an evaluation. In my lengthy research I learned that recent research shows that getting the CI earlier rather than waiting is likely to give you better results. It was life changing for me and I am thrilled I was an early adopter. I’m almost a year from “activation” - turning on the CI - and my booth scores are 95% in my CI ear. My research included lots of reading, joining the facebook groups for each of the three brands - Cochlear, Advanced Bionics, Med-El - and asking questions. Also zoomed with reps from each company - very helpful. the site cochlearimplanthelp.com9 is very informative. Most of us have worried too much and most wish they had done it sooner. I chose Advanced Bionics mostly because I have a Phonak Marvel Link that syncs with the CI - they are the only brand that offers that connection. All will help, but I am thrilled with . I am happy to talk off line or message if you want more input. It’s a lot to process. FYI the AB offers accessory “points” which can be used to cover the cost of the linked HA from Phonak, so it ended up a lot less money out of my pocket by having the surgery than purchasing a new set of HAs. I’m 61.

Thanks joanhawsey! I I appreciate everyone’s take on my hearing loss. It can be overwhelming trying to make decisions about one’s hearing loss and how to fix it. For years, I have been so happy with hearing aids that I didn’t think I would ever be bad enough for a . The last few years though, I have had a huge drop in hearing and my word recognition has gotten so bad, that I thought I just needed new aids and a new audi. Looks like I was wrong. My original audi led me to believe that Oticon OPN 1s would be sufficient for me for quite a few more years. I wasn’t happy with her adjustments and went to a different audi that does and she was the one that suggested the CI. So maybe I just needed a new audi, lol. I will definitely be studying up on CIs as I now believe the more I wait the worse I will get. So, I appreciate the info on the 3 different brands and will definitely check all 3 out. I have a question, how long after CI activation was it before you were you able to hear better in that ear? Was there a learning curve or did you just start hearing better and having better word recognition immediately?

Edited

I was lucky to understand words at activation. However everyone sounded like Darth Vader. I tried to embrace the humor in that and said “Hi Darth” each morning when I put my on. I went to a restaurant right after and it was somewhat overwhelming with all the new sound input being so unusual. I was challenged by the very slight delay I sensed between my ear and my CI ear. Eventually our brains adjust and it isn’t an issue. After about a month the voices started to normalize and sound like people again. I did about an hour a day of concentrated “rehab” using various apps and websites. Really, any listening is rehab, so having radio or TV going, music, streaming audio books to just the CI ear, all that helps your brain adapt. Sitting in a silent house won’t. Many say to just wear the CI and rely on that for the first few months, but my two Audi’s don’t push that - said it is more for those who profoundly deaf and get a CI. My kids, after just a few months, noticed improvement. They don’t have to repeat everything. It’s not the same, but it is better than not having it by a long measure.

Question - IIRC - when I have my word recognition testing performed it is while wearing the headsets without my ’s in. So basically “unassisted” by a hearing aid processor word recognition score. However aren’t word recognition scores taken with ’s by default assisted by the CI processor? Should word recognition scores be taken with a HA in to compare with potential improvement moving to a CI?

Yep I have ’s and have been told that ’s would improve my word recognition score to nominally around 80% (but - everybody is different caveat).
On the drive home I realized that my word recognition score test was without my HA’s in and that the improved up to 80% with CI’s claim had to be with the CI’s active.
I wondered what my word recognition score would be with my HA’s in? Would it be 70% so maybe only a 10% improvement?

What were the results of your word understanding scores?
From your description you may not be a candidate for .

In reply to @Rocketmahn

It doesn’t hurt to get evaluated for a . It will help you decide what to do. For my CI evaluation, they did tests with and without my .

On activation, I heard sounds and high squeaky speech immediately. I did at least a hour of rehab daily. One month after my CI was activated, I was tested with just my CI (right ear) and with both the CI and HA.

I got great results - see my one month hearing test results below. My hearing with CI is now borderline normal. It was so worth it.

IMG_3941

In reply to @Rocketmahn

It’s true that word recognition scores are done without hearing aids, but it’s not really “unassisted” as it should be done at an optimal volume. Properly done word recognition scores are usually considered a cap on what you might obtain with hearing aids.

I have fairly similar and I have been referred for a cochlear implant assessment. They have currently given me Super Power hearing aids so need to see how I get on with those before they officially refer me. I was told with our high frequency loss, cochlear implant is the only option because we have dead cochlear regions and hearing aids just distorts the HF sounds (does not provide any clarity)

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