Cochlear Implants

Posted by mwbucket @mwbucket, Jun 22, 2016

Considering a cochlear implant. Any info on type to get and/or any needed info to consider???

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@julieo4

@rae54 I will be interested to hear what the medical doctors tell you, and what you decide to do. I encourage you to go for it!

My poorer ear was implanted in 2005. I was managing then with a power hearing aid in the other ear, along with constant use of assistive technology. I am still bimodal. At a recent testing I scored 99% word recognition using both technologies. The CI has been amazing. Being bimodal has worked well for me even though the aided ear alone, tests way below what they score together. The CI alone also scores below the bimodal testing. It's remarkable how the brain adapts.

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Julie thank you for your response- I have a call scheduled with Mayo Clinic tomorrow to schedule my consultation appointment. I have read a lot on information on this site and with Cochlear. We decided that I’m going to get the cochlear implant. I also believe I will be Bimodal as my audiologist said my left ear should receive the implant the they should place a high end hearing aid in my right ear .... I’m looking forward to being able to hold conversations again.

Question - after you have the implant installed did you gave any issues fir the next few weeks or did you live your life as normal? Thank you Raeann

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@colleenyoung

Rae, here is the link to the journal discussion that @lizzy102 started in 2019 and she continues to update:
* My Cochlear Implant - a journal https://connect.mayoclinic.org/discussion/my-cochlear-implant-a-journal/

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Colleen thank you very much I’m going to check this out ... much appreciated.. Raeann

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@rae54

Julie thank you for your response- I have a call scheduled with Mayo Clinic tomorrow to schedule my consultation appointment. I have read a lot on information on this site and with Cochlear. We decided that I’m going to get the cochlear implant. I also believe I will be Bimodal as my audiologist said my left ear should receive the implant the they should place a high end hearing aid in my right ear .... I’m looking forward to being able to hold conversations again.

Question - after you have the implant installed did you gave any issues fir the next few weeks or did you live your life as normal? Thank you Raeann

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@rae456 Good for you to move forward on the CI. I don't think you'll be disappointed. I had the surgery done on a Thursday, and went back to work a week later. The first couple of days after surgery I was very tired, but no pain. Yes, it was uncomfortable to lie down on the surgery side, so I slept in a recliner for a few nights. I always tell people who are having surgery of any kind to request anti nausea medication prior to the surgery. I did and I had no issue with nausea or dizziness. Everyone's experience is unique. I knew what to expect after activation a month later, and did amazingly well fairly soon. It took a while to get used to hearing that way, but within a few months it sounded very normal to me, and still does. A miracle to be able to hear again!!

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@judysmayo

I have profound hearing loss in my left ear and I wear a BiCros that sends the sound from my left side to my right ear. I was also told to only repeat the words that you understand. I found doing that very stressful although my word recognition dropped from my last audiogram. I find it difficult because I am so familiar with the words that I am asked to repeat. In my actual daily surroundings and hearing experiences I find that my word recognition is a lot lower than in the controlled Hearing booth. I am not a candidate yet for a CI because I have Medicare. All I want to do is to be able to hear!!! I can’t even say that sentence without crying its so upsetting.

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@judysmayo I am going through all of the messages on this cochlear implant discussion because I am now a candidate for a CI.

I can understand too well that you sometimes just want to cry. I have been through a lot of health problems, I had a liver transplant in 2016, but my loss of hearing has by far been the most depressing problem.

Getting a CI is scary to me, there are possible problems and even though they are not common, they do happen. I'm to the point though where I don't think I have other options. Oticon has come out with a hearing aid, the More, that's supposed to help with word recognition but I doubt it will help enough. My audiologist has a pair on order for me to trial. If those don't help enough I will go the CI direction.
JK

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@contentandwell

@judysmayo I am going through all of the messages on this cochlear implant discussion because I am now a candidate for a CI.

I can understand too well that you sometimes just want to cry. I have been through a lot of health problems, I had a liver transplant in 2016, but my loss of hearing has by far been the most depressing problem.

Getting a CI is scary to me, there are possible problems and even though they are not common, they do happen. I'm to the point though where I don't think I have other options. Oticon has come out with a hearing aid, the More, that's supposed to help with word recognition but I doubt it will help enough. My audiologist has a pair on order for me to trial. If those don't help enough I will go the CI direction.
JK

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We have several people in our hearing loss group that are doing well with CI. I’m glad that you’re pursuing the Oticon More before making the decision. Best to pursue all the latest technology before deciding. Phonak also has a new Paradise line.

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@judysmayo

We have several people in our hearing loss group that are doing well with CI. I’m glad that you’re pursuing the Oticon More before making the decision. Best to pursue all the latest technology before deciding. Phonak also has a new Paradise line.

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@judysmayo I went to my audiologist last week and had a hearing test, etc. When we discussed HAs she definitely leaned toward the Oticon. She deals with both so she could have recommended either. I'm not sure why she seems to prefer Oticon, perhaps just because that's what I currently have, the Oticon Opn1 HAs.
JK

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I had a hearing test last week with my audiologist and she feels that I may want to look into getting a cochlear implant. I am looking into it, trying to make appointments with two places, Mass Eye and Ear and Lahey Clinic but making appointments is more difficult than it should be, exacerbated of course by the fact that I have a hearing impairment and understanding what is said on the phone can be difficult. In the meantime, I have some questions that probably can be answered by people who have cochlear implants. I would really appreciate any input.

• After the surgery, before they can add the device is about 6 weeks from what I have read. During that time that ear cannot hear at all, correct?
• Is the surgery generally done outpatient or do most people stay overnight in the hospital?
• I have read things indicating that CIs are most successful on people whose hearing loss is relatively recent. I identified my hearing loss in 2004 and have been wearing HAs since then. Have any of you gone that long with a hearing loss before getting a CI? My hearing loss has gotten progressively worse over the years and is now severe in one ear, profound in the other, and my word recognition is in the 20-30% range.
• When I have gotten new hearing aids there are sometimes frequent appointments to get them adjusted correctly. Is that true also of CIs? I ask because of the two places I am considering Lahey is more convenient than Mass Eye and Ear but I prefer Mass Eye and Ear. They both seem to be very well regarded. Dartmouth Hitchcock was recommended also but that’s much further away than the two places in MA.
• The predictions I have seen of how long it takes to really get the full benefits indicate it can take quite a while. It sounds as if frequent appointments are needed then also. How often did you have to see the doctor after the device was connected?
• Does anyone have experience with either of the two places I am considering and if so would you recommend that place and a specific doctor from there? I am very ambivalent because getting to Lahey is much easier than getting to Mass Eye and Ear but I want the best place and if that means dealing with a less convenient place then I will do that.
• When I spoke to someone at Lahey they mentioned I have to have a two hour hearing test there. Is that typical? Obviously much longer than the hearing test I have at my regular audiologist.

I’m sure I will have more questions but that’s what I can think of for now.

Thank you for any help you can provide.
JK

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@judyca7

I'm very happy that your CI has been so successful. I just joined Mayo Connect today.....want to learn more about my options to treat my hearing loss which happened suddenly 3 years age. At the point now where hearing aids do not help much but my docs have told me that hearing aids have to be completely useless before I qualify for a CI. Were you also told this? Profound hearing loss and also major balance problems have been a real life changer for me and I miss my old life so much. Thanks for listening. Judy

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This thread just popped up again. Since my initial response, I have heard a few other stories about people being told that their hearing isn't bad enough for a cochlear implant. Again, I want to encourage anyone who has been told that to consider being tested at a CI center/hospital. The criteria for candidacy is considerably lower than it was even a decade ago.

It seems that some hearing aid providers; be they audiologists or hearing instrument specialists, do not always suggest CIs to their customers. In many instances, those providers lose a customer if the person becomes a CI recipient. I don't like to think that is a reason for not encouraging someone who is struggling with hearing aids to consider a CI, but as many providers have said: "It is a business". (That is my reason for using the term 'customer' rather than 'patient' in this post.)

Also, some providers do not have current information about the success rate of cochlear implants. After re reading the post by judyca7, I ask the question "What does a provider mean by hearing aids being 'completely useless'?

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@contentandwell

@judysmayo I am going through all of the messages on this cochlear implant discussion because I am now a candidate for a CI.

I can understand too well that you sometimes just want to cry. I have been through a lot of health problems, I had a liver transplant in 2016, but my loss of hearing has by far been the most depressing problem.

Getting a CI is scary to me, there are possible problems and even though they are not common, they do happen. I'm to the point though where I don't think I have other options. Oticon has come out with a hearing aid, the More, that's supposed to help with word recognition but I doubt it will help enough. My audiologist has a pair on order for me to trial. If those don't help enough I will go the CI direction.
JK

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Regarding the Oticon More I found them less effective than the advertisement. My audiologist ordered them for me and subsequently moved away. The next audiologist thought I'd do better with the Phonak Paradise so she ordered them. I tried both the More and Paradise and found that neither lived up the the advertisements for me. Of course we are all different and yours experience may well be different.

After trying the More and Paradise I finally decided to keep the More and return the Paradise. It was a very difficult choice.

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Yesterday was spent at Mayo with my daughter helping. First appointment was to select which CI I wanted to go with. Robin and I had done a lot of homework and decided on the Cochlear because of it's Kanso 2 (I have problems with dermatitis caused by the ITE). And Cochlear gave a lot of free 'toys'. Mayo uses Cochlear, MedEl (another consideration due to their Rondo) and AB. We both discounted AB as it didn't have an off the ear device). Dr Le then went over each one, plus, minus and the same in comparing them.

Turns out I'm going with the AB! The device is BTE, however it has a microphone that is directly in front of the ear canal (doesn't go in the ear) and for me would give better hearing. Another major point for me was that it included the HA (no cost) that 'talks' directly to the CI. Will stream directly to my Iphone (which was one of the selling points on Cochlear - MedEl you need to wear the mini-mic).

AB's HA is made to directly interface with the CI, which seemed to be a major plus. At one time AB had a recall (which had concerned me). Dr Le (who is fabulous) knew all the details and that it had been fixed. For my hearing loss - flat and severe - the AB turned out for me to make the most sense.

Next I was in and out for the CT - a piece of cake.

Last for the day was the balance tests, which were very easy and interesting.

Thursday I see the surgeon to hear (pun intended) what the team decided and if a 'go' to set a date for the surgery. The whole team has been wonderful. For the CT I was scheduled for 4:45pm, which meant hanging about for almost 3 hours. They managed to squeeze me in between the other two appointments! Yeah for Eric!. And by the time we headed out a major rain storm had left the area and we didn't have to mess with rush hour traffic and another storm (Arizona people do not drive well in rain - we aren't used to it).

Wishing you the very best in your journey.

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