Well stated as usual. One major reason I went with AB is that my local AuD was well versed in CIs and Phonak which makes the HA that goes with AB. I don’t have a lot of local AuD options, so knowing she would be familiar with the programming for the CI locally after surgery, is seemed to make sense. My research of the companies confirmed the decision. Confusing - absolutely. But sometimes practicality directs us to the solution and they all work to help us hear better.
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I researched AB and Cochlear while I was sitting on my fence. Med el I didn’t even consider after very brief research because of costs.
What guided me as a pensioner was local availability and out of pocket expenses. For AB I would have had to travel interstate for surgery, Drs visits and mappings. This just added to my out of pocket expenses.
Cochlear was a 1.5 hour trip both ways on public transport. If I drive it’s only 30 minutes but parking is difficult. And they bulk bill all Drs and mappings needed.
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This is pretty much me too Sheryl.
As a Phonak hearing aid user for many years I really wanted to go AB.
When I finally made my decision about which surgeon to use for the implant we got together and talked for about an hour about the CI. He has lots of experience with short term and long term implants. I could not compete with this experience at all so I trusted his judgement.
This process is very much part of the CI journey in my opinion. It’s a difficult one for sure.
Then the journey of rehabilitation begins which is very different for each of us.
By the way…
My friend who was having difficulty with speech understanding with his new CI has improved a bunch. He still has a ways to go but has really done better. His issue was the hearing aid on the other ear. He just would not push the CI ear to learn by turning down or taking off the hearing aid. When he finally did turn the volume down on the hearing aid side and his audiologist turned the CI volume up he started getting better speech understanding.
The brain can sure take the easy path of you let it.
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Thank you so much for your response. I am so glad your friend is doing better!
I have been reading about CIs, and it seems as though some people think bilateral cochlear implants are better. Any thoughts about that?
Currently I am trying a pair of Rexton hearing aids from Costco, and I have tried most of the excellent hearing aids available. I had some Oticon OPNs for several years, and thought the sound was poor due to the HAs. Now I wonder if my loss was getting worse, very possibly due to ototoxic medications. I spoke to the fitter at Costco about his experience with cochlear implants, and he said he thought 50% did well, 50% did not. I asked if he thought their rehab played a role, and he said no. Of course I don’t know what experience he has with CIs.
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Thank for your response! I guess I will be researching CI brands soon. I like the idea of the Acclaim totally implanted cochlear implant, which they call TICI, but I am aware it’s probably a long shot that I can do that soon, and I feel my poor hearing is affecting my life in many ways. I am retired also and covered by standard Medicare and a supplement.
I worked in health care most of my life so I know the team can make a difference. That’s why I will consider traveling for care.
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Thank you for your response. I looked at your profile and I hope I can do as well as you did with the implant! As I learn more I am sure will be posting here again with specific questions.
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Now for an update after activation which was 2 days ago.(2 weeks after surgery). This process ran about 2 hours and involved checking the status of all 12 electrodes (MED-EL), setting the volume on each to a level that i sinitially adequate and going over all the equipment, parts and software.
Not have a CI before I didn’t know what to expect. At the present time I have no hearing in the implanted ear. Time will tell if this is permanent. I had heard to expect sounds like squacks, electronics, robotics, distortion and even Mickey Mouse. While all these ar ereasonable descriptions of what it initially sounds like, I was pleasantly surprised to realize that I could actually understand speach better with the sound processor than with only the HA in my other ear. In a quite setting I was able to repeat a spoken list of colors with the audi’s face covered. All ihn all a very positive outcome.
Like anyone embarking on surgery that is life altering and with some risk, I was on the lookout for surprises. There were a few, that I was not expecting, but manageable. These include:
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Numbness in the tiop of my ear and the area behind it. This is dur to the incision cutting nerves in that area. I am told this will likely return and already I am developing sensation there
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Hearing my pulse. This is more than ordinary Tinnitus and it isolated solely to my implanted ear. The electrode must be picking up the pulsing of a vein nearby and that vibration is transmitted to my cochlea which is responding. Annoying
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Location of the implant. This is a bit closer to my ear than I have seen in pictures and the effect is the DL coil is a bit close to the sound processor. It doesn’t allow as much space for glasses to squeeze in…
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Congratulations.
From your post you are off to an excellent start.
I am looking forward to your future posts about all the things you now hear that you have not heard in years.
From your description of in the office colors test I would expect your audiologist to start ramping up the volume very soon if they haven’t yet.
Pretty exciting technology!!!
Your journey has just begun.
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Congratulations @jcech what a great start to your hearing journey revival.
- Your ear will be numb as superficial nerves have been cut. Your ear superficial nerves will regenerate themselves. It will take anywhere from 6 months to one year for the regeneration to be complete.
- You will get used to hearing all these sounds that you didn’t before. One of the points where the pulse can be taken is in front of the Tragus. I was able to hear my pulse there as well. But it does go away as you start to understand more sounds that you can now hear.
- Did you discuss the position of the internals with your surgeon prior to surgery? You might be surprised, as my glasses arm sits right under my processor without any issues at all.
Good luck on your new hearing journey.
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All great news. Understanding words at activation is a great start. Agree that you will get used to the other sounds - it’s why they often leave the overall volume low to start and bring you up slowly. It’s a lot to get used to after not great input. So glad you are doing well and sharing your experiences here.
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This information is incorrect. Without getting proof CI’s are in the mid 90’s that do well. As far as rehabilitation it is very important. Like anything learned it takes effort. This goes for CI’s as well.
One implant or two is based on the person’s hearing. If both ears are CI candidates that person will do much better with two implants, I do. Now if that same person only gets one implant they will do better than not having an implant but not as good as getting two implants.
Bimodal is another question entirely. It depends on the person’s hearing.
I hope this answered your questions.
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My hearing loss doesn’t require CI’s yet, but I recently watched a film called “Sound of Metal” which goes through a musicians journey into going deaf and having CI’s fitted. Has anyone else seen this, and does it compare to the reality?
Peter
Thanks for the helpful info! I was wondering where the fitter at Costco got his info since I am pretty sure fitters don’t work with cochlear implants.
With 2 CIs is it difficult to deal with the 2 processors? I am wondering how it is to have the processors on the head. I imagine it is a small thing compared to deafness.
Where I live I am concerned that, if I am eligible for CI, I won’t be able to see an ENT for months. I’ve been trying to see an ENT for a year and I can’t get in. Also, I don’t see any expertise with any of the ENT docs. I had to wait months for the audiologist appointment. That’s why I will most likely go out of state.
Costco has audiologist too, not just formally trained HIS. I believe Canada Costco’s only have audiologist but not positive. CI’s are specialized. Not all ENT, audiologist or HIS ate familiar with CI.
The CI processor’s are similar to hearing aids as far as care. Not A big change with CI from hearing aids.
If you contact the three cochlear implant companies they will help you find the right people for evaluation tests , surgery and fittings. They are great at this and want to help.
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Thanks again. You are a great resource!
I am interested in the rehab process that others have gone through…
What resources do people work with? I am using the Hearoes app which is good, but it is a bit vague about what it is trying to accomplish or what to expect. This is the only resource I am using right now and yet I have no idea what I should be expecting to do and get out of it.
How much time do you spend each day on rehab?
Is there a better time of day to train? Morning vs evening? Multiple times/day?
What is the role of the audiologist or a hearing/speech pathologist in this and how much time should I expect to spend with them? Is their purpose just to evaluate progress or to conduct training?
I have been thinking about you, wondering how you are doing. Do you feel like you are understanding more speech than last week?
Did your audiologist give you direction for rehabilitation? Like the Heros, or listening to audio books while reading along.
Your questions are what this thread is all about, CI rehabilitation. From reading I have learned each of us is different about how we learn. @Deaf_piper has told us about her rehabilitation a number of times. She worked hard reading every day. Reading did not work for me, I watched old TV shows I knew by heart with the TV streamer on and closed captions on. This proved to work great for me.
Something else I did that my audiologist did not tell me about was to take my hearing aid off at 7 days after activation. This forced the CI to do all the work and force my brain to.learn with the new CI. This also proved well for me.
If you haven’t done so read through as many posts as you can in the CI forum. Lots of really good messages from a bunch of different members about their CI journey.
When is your next audiologist appointment? The second one is always a big step towards the better usually. They should also test you for improvement too. Nothing like getting better than your old hearing with aids!
As @Raudrive said I did 2 hours every day for 12 months. I split the 2 hours any way I felt on the day. Because I could understand speech at activation I found iAngelSound very boring same with the Hearoes app. Somewhere in amongst the
CI thread I put a whole list of apps that might help you of you might find them boring. I know Rick and I did. I joined my local library, they have a couple of apps that lets you borrow books to stream for free. The one I used was borrow box but also another is Libby. Every library might use something different though. I’m an avid reader so I thoroughly enjoyed all the books I read/listened too. Rehab to me wasn’t a chore because of my love for reading.
Also you have Spotify free version for music and podcasts. If your an active person that enjoys walking or riding listening to podcasts or music as your out and about is another good avenue of rehab. Spotify is good as you can Que up the music that you know off by heart. Another good app is ABC listen it’s all podcasts and local news.
Another good source is ESL on the computer.
I found the list of apps for you.
Good luck to you on your new hearing journey.
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These are good training resources and I will look into them. All I am doing right now (1 week after activation) is Hearos, which is actually quite challenging. It has 3 settings for each drill in each of 5 modules. One is quiet, then city background and then cafe background. You can’t move up until you have mastered each level of background noise. The drills are words, sounds and letter groups. Not easy.
To @Raudrive’s question, my next audio appt is 3/19. A little longer than I woudl have expected give my activation was in January.
I am putting in ~ 1+ hrs/day as this is even more than Hearos blocks out. I spend the bulk of the day with only my CI active. I leave off my HA and actually I find in a noisy setting I hear better this way. Less background noise.
I have also come to grips with the reality that I have NO residual hearing in the implanted ear. At this point, I assume this is permanent. I was prepared for that, although we did everything I imagined was possible to preserve this. Very interested to find out why this is lost. Feel that the CI suppliers need to keep tabs on how surgeries went and what preserves residual hearing, not just assume things.
I also think there hasn’t been enough “what to expect after surgery” information. This avoids feeling that a new effect is negative, vs normal and an explanation of why you experience these is needed. Ear numbness, hearting my pulse, loud ear popping, metallic sounds with ear popping or hitting the ear, need to be explained as normal aftereffects if that’s the case.
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I’ve been trying for over 3 years now why I lost my residual at 15 months PO. No one is able to explain why! It’s just one of those things.
This numbness will resolve itself over the next 10-12 months. It happens because of all the superficial nerves from around the back of the ear where your surgeon cut to get into you inner ear.
All those other sounds you’re hearing could well be tinnitus.
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