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Cochlear Implant Experiences
Hi folks,
I'm new to this forum and have searched (will be searching more) for existing threads about experiences getting a cochlear implant. I am 73 years old and have had progressive hearing loss for some 30 years. Both ears are essentially the same. My audiogram shows that I have little or no hearing above 2000 hz. My word recognition is around 34% in both ears. I currently wear Phonak BTE aids.
I do well understanding speech via a bluetooth connection to the HAs and can easily carry on phone and zoom calls. Understanding people in real spaces is far more difficult. I'm pretty good one on one in a quiet setting though I hear some people better than others. Noisy environments are very hard as are many people who speak more softly, quickly, and with higher pitched voices.
Both a local audiologist in NM and the team at Mayo feel I would benefit greatly from a CI and I'm tentatively scheduled to do that at Mayo in April. If indeed my existing hearing is preserved, I may be a candidate for a hybrid solution amplifying my residual lower frequency hearing coupled with the implant for the higher frequencies. Otherwise I would rely on the CI completely. Regardless, I will wear a new hearing aid in the other ear.
I find the decision challenging mostly because 1) there's no going back, and 2) the process to relearn language sounds like it is daunting. Will I see enough benefit to make this worthwhile? How well will I navigate the journey of relearning language and what is that like? I've been told that it'll all sound like noise and will be a bit overwhelming at first.
I am encouraged that so many people seem to feel it was all worthwhile. It's just hard to know what the journey is going to be like.
I'm looking for people who can share with me their experience going through this process - the good, bad and ugly. I'm also looking into the mentor program that Cochlear runs as I've pretty much decided on that brand.
Thanks
Tom
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@julieo4 I appreciate your comments and opening up to me and others.
I am not sure I fit the criteria for CI’s yet based on two audiologists opinions. I am weighing trying some more powerful hearing aids. One is the Phonak audeo I 90 Sphere. Also apparently Starkey also has a next generation hearing aid I might try during my trial period.
Right now they are working on a fully implantable CI and there are people that have them implanted. The thought of never having to take them out to go swimming, take a shower and just be able to hear all night is maybe worth waiting for.
How is your word clarity now and how do you do in a crowded restaurant?
I respect your opinion along with anyone else who would like to weigh in regarding newer hearing aids or their experience with CI’s. Learning how to learn how to hear again terrifies me. I have been told it can be six months to a year and I am 74 years old.
@daveshaw Cochlear implants, like hearing instrument technology are continuously evolving. Reality. Yes, some day in the future there may be something better than there is today.
It's a reality that hearing instruments do not 'fix' hearing loss. They help in some situations. Hearing in specific frequencies varies individually. Many of the new hearing aid models have adjustments that can be set by a professional audiologist to help improve those frequencies. Still, nearly everyone with hearing loss whether it is conductive or sensorineural will have difficulty hearing well when there is background noise.
I manage that as best I can by using a hand held microphone that works with my CI processor and my hearing aid. Not perfect; but far better than without it. It shows to use. People see it and ask questions. As far as I'm concerned, that's a good thing as I can explain it in hopes it might help them or someone they know.
Regarding the Envoy Esteem Middle Ear Implant which is being developed by Envoy Medical Corporation, 4875 White Bear Parkway, White Bear Lake Minnesota 55110. Yes, this may be a device of the future for adults diagnosed with moderate to severe sensorineural hearing loss. It is fully implanted. It is very new.
I picked up literature at the national HLAA Convention in Indianapolis that explains it. I have yet to meet anyone who has had this system implanted. While this devices is fully implanted, it requires a battery to function. That battery needs to be replaced periodically in an outpatient surgical procedure. In the literature it says the battery life is 4.5 - 9 years, but then in smaller print it says it may be reduced to 2.8 years depending on the settings of the device.
This device does have FDA approval. However, the literature I have also lists quite a few Contraindications for the Esteem. You may want to request literature from the Envoy Company.
Choosing to wait if one qualifies for a cochlear implant is a personal choice. What is available and in use now from 3 different CI manufacturers has a very high rate of success. We all have choices to make. As I've said several times, my only regret is that I didn't have my CI surgery done sooner. I waited a decade after seeing the success others had. The remarkable difference this has made for me is wonderful. It took me less than a month to experience the improvement with the CI.
I had a friend who was an MD, who decided not to get a CI. He struggled for years while he waited for a 'cure' that he believed would come in his lifetime. Sadly, he passed away from a sudden illness shortly after he retired. I can't help wondering how much better his life would have been had he gone the CI route. We'll never know.
I wish you luck with hearing aid trials. There are many good products out there. The fitting of those products is the game changer in most cases.
@julieo4 I have a good audiologist in fact I have two. One is actually out of my network but well worth the money for periodic visits. Both have told me I am probably not a candidate for CI’s and they are still trying to dial in my hearing aids better.
As far as Esteem my out of network provider at UCH which is the biggest hospital in Colorado says they won’t work with Esteem and said it wouldn’t be an option.
Thanks for your long response. Greatly appreciated.
PS I watched the Packers vs Dallas and was disappointed that it ended in a tie. 😢
I am seeking advice as well. Long story short, a history of hearing loss and wearing hearing aids for 9 years. Right ear is always the worst. Recent hearing test showed 0 clarity in right ear. It turns out I had extensive Cholesteotoma in the right ear that was removed three weeks ago and the ear drum repaired. My doctor wants to do a second look surgery in December. If all clear, install a cochlear implant.
I am nervous about the cochlear implant process and is the benefit worth going through it all.
@rsedlock1958
This past Friday, October 3rd, I had my cochlear implant surgery done on my right ear.
I only decided to have the surgery after an extensive hearing test showed that my hearing loss on both side was beyond any hearing aid could compensate.
I spent a lot of time to understand as much as possible about the benefits, the recovery time, the activation and subsequent phase of training the brain to hear again with the implant.
Preceding the surgery were a string of medical exams, MRI and CT scans and I got from my audiologist packages of literature from all 3 manufactures and contacted each of their local area support managers, with whom I had several zoom Q/A meetings,. Each put me in contact with volunteer users who I talked to, in order to learn from their individual experiences and get suggestions for the phases to maximize gaining from the cochlear implant.
I discussed with my clinical audiologist the differences of the 3 suppliers and decided in favor of Med-El because of
1) Med-EL's OTOPLAN program, which the surgeon uses to upload the MRI and CT scans, and plans the entire procedure and is used as a guide during the procedure.
2) Being a retired engineer and also a classical music lover, it was important for me not only to get a good technical understanding of the procedure and hardware but also by using the OTOPLAN program the surgeon would select the longest electrode array in order to cover the maximum available length inside the cochlear.
Regarding your understandable nervousness about the implant process, I also had those moments, but I have learned in my long life (I am 85) that the best way to overcome such fears and reluctance is to dig into the details, understand as much about the procedures, and the efforts needed to learn to hear again.
If you haven't done it yet, I encourage you to contact other CI users to learn as much as possible from their experience. It can only help you to think positive about it.
Since I will have Bimodal hearing, I need to continue wearing my obsolete OTICON miniRITE hearing aid on my left ear, and I am anticipating that in a few months I might decide to get an implant for my left ear, too.
I have one major regret: I should have decided to get the procedure done at least two years ago when an audiogram already showed that I had sensorineural severe hearing loss.