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???

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Major 'oops - now what do I do'! Saw the surgeon yesterday - super nice and has a WONDERFUL VOICE even with a mask. I had no problems hearing him. So he doesn't think I have a major problem hearing, at least in a controlled, quiet setting. I'm now severe flat line. He said he normally finds it easy to either said 'yes you need it' or 'no you don't'. Apparently I'm in his gray area. I asked him what he would tell me if I was his Mom - basically to try hearing aids for another 3 months. However, that would appear to mean spending 6K on something that I might not need in 3 months! Hey, I'm a penny pincher - especially on what I consider big money!

I turned in my trial Phonak hearing aids - which I was having a great deal of trouble with anyway as background noise was constantly high. Dr Le gave me a Phonak loaner and it is sooo much better. Not sure which model it is. Dr W is going to talk to the team. He was concerned that the CI would make my hearing worse rather then better.

I'm also very good at 'cheating' - when I did the hearing tests on understanding sentences I did well because if I caught a few words I basically could fill in the rest - i.e. 'Little Red ? ? ? ? ?'. I also went on Phonak learning site where you listen to the voice and then select the matching answer. Once again some voices easy. Others I would get a word or two and then it was a piece of cake to select the correct answer. One of the reasons the family didn't catch on for years that I was having a problem hearing them. I'm guessing I'm not alone in the 'cheating' department.

So at the moment I'm in a dither and on 'hold'.

In the meantime we have a Medicare Home Heath nurse arriving to evaluate my husband = he has Kidney problem (CKD Stage 3) among other problems and is 88. Basically housebound. Can't even make to to visit grandkids.

Busy week!

REPLY
@billchitwood

Major 'oops - now what do I do'! Saw the surgeon yesterday - super nice and has a WONDERFUL VOICE even with a mask. I had no problems hearing him. So he doesn't think I have a major problem hearing, at least in a controlled, quiet setting. I'm now severe flat line. He said he normally finds it easy to either said 'yes you need it' or 'no you don't'. Apparently I'm in his gray area. I asked him what he would tell me if I was his Mom - basically to try hearing aids for another 3 months. However, that would appear to mean spending 6K on something that I might not need in 3 months! Hey, I'm a penny pincher - especially on what I consider big money!

I turned in my trial Phonak hearing aids - which I was having a great deal of trouble with anyway as background noise was constantly high. Dr Le gave me a Phonak loaner and it is sooo much better. Not sure which model it is. Dr W is going to talk to the team. He was concerned that the CI would make my hearing worse rather then better.

I'm also very good at 'cheating' - when I did the hearing tests on understanding sentences I did well because if I caught a few words I basically could fill in the rest - i.e. 'Little Red ? ? ? ? ?'. I also went on Phonak learning site where you listen to the voice and then select the matching answer. Once again some voices easy. Others I would get a word or two and then it was a piece of cake to select the correct answer. One of the reasons the family didn't catch on for years that I was having a problem hearing them. I'm guessing I'm not alone in the 'cheating' department.

So at the moment I'm in a dither and on 'hold'.

In the meantime we have a Medicare Home Heath nurse arriving to evaluate my husband = he has Kidney problem (CKD Stage 3) among other problems and is 88. Basically housebound. Can't even make to to visit grandkids.

Busy week!

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Yes. That 'cheating thing' is real. This is especially true for those of us who have been tested many times over the years. Our brain kind of knows what those sentences are. Some of the tests include nonsense sentences that don't make sense. Still, if they don't change those periodically we tend to figure them out. This is what we are doing in real life much of the time; filling in blanks.

No one wants to fail a test, so we try not to.

Were you given the 'speech in noise' test? That one starts out loud and clear and becomes difficult because typical noise is added after every few sentences. It doesn't take long before your head starts spinning. It's like being at a very noisy cocktail party. People with hearing loss don't do well in situations where background noise is prevalent. That's our nightmare.

How long can you keep the loaner hearing aids?

REPLY
@julieo4

Yes. That 'cheating thing' is real. This is especially true for those of us who have been tested many times over the years. Our brain kind of knows what those sentences are. Some of the tests include nonsense sentences that don't make sense. Still, if they don't change those periodically we tend to figure them out. This is what we are doing in real life much of the time; filling in blanks.

No one wants to fail a test, so we try not to.

Were you given the 'speech in noise' test? That one starts out loud and clear and becomes difficult because typical noise is added after every few sentences. It doesn't take long before your head starts spinning. It's like being at a very noisy cocktail party. People with hearing loss don't do well in situations where background noise is prevalent. That's our nightmare.

How long can you keep the loaner hearing aids?

Jump to this post

I completely failed the noise test! Got an F. In the quiet word test I think I got over 80% - both of these tests were using the new hearing aids. Unfortunately very little hearing in life is done in a quiet 'good' small room.

I'm not sure how long I can keep the loaners as haven't heard back from Dr Le - although I have a feeling as long as I'm still under consideration for the CI she will work around it. At this point I'm more inclined to trust the experts rather than family or even myself. Dr Le had me feeling confident and Dr W scared the heck out of me. So at this point I would be flipping a coin rather than using logic. Dr Le would understand what Dr W is concerned about and know how to process it without emotions (fear) getting in the way. At the moment the loaners are working better - in a one on one situation than the trial pair. Tomorrow I'm joining my tribe for Sunday lunch - they are all a very talkative bunch with a wide range of voices - extending from one Granddaughter who talks so low none of the family can understand her (she gets that from her Mom) to Robin who is expert at getting me to hear her. So that should be a good test of these HAs anyway.

Everyone wishing you a great weekend. Our weather has turned perfect. Only problem is the bugs are out enjoying it as well so itchy places where they stopped to dine on me.

REPLY
@billchitwood

Major 'oops - now what do I do'! Saw the surgeon yesterday - super nice and has a WONDERFUL VOICE even with a mask. I had no problems hearing him. So he doesn't think I have a major problem hearing, at least in a controlled, quiet setting. I'm now severe flat line. He said he normally finds it easy to either said 'yes you need it' or 'no you don't'. Apparently I'm in his gray area. I asked him what he would tell me if I was his Mom - basically to try hearing aids for another 3 months. However, that would appear to mean spending 6K on something that I might not need in 3 months! Hey, I'm a penny pincher - especially on what I consider big money!

I turned in my trial Phonak hearing aids - which I was having a great deal of trouble with anyway as background noise was constantly high. Dr Le gave me a Phonak loaner and it is sooo much better. Not sure which model it is. Dr W is going to talk to the team. He was concerned that the CI would make my hearing worse rather then better.

I'm also very good at 'cheating' - when I did the hearing tests on understanding sentences I did well because if I caught a few words I basically could fill in the rest - i.e. 'Little Red ? ? ? ? ?'. I also went on Phonak learning site where you listen to the voice and then select the matching answer. Once again some voices easy. Others I would get a word or two and then it was a piece of cake to select the correct answer. One of the reasons the family didn't catch on for years that I was having a problem hearing them. I'm guessing I'm not alone in the 'cheating' department.

So at the moment I'm in a dither and on 'hold'.

In the meantime we have a Medicare Home Heath nurse arriving to evaluate my husband = he has Kidney problem (CKD Stage 3) among other problems and is 88. Basically housebound. Can't even make to to visit grandkids.

Busy week!

Jump to this post

@billchitwood @julieo4 I've never heard of a CI making your hearing worse but I have to imagine it's because of the learning curve needed to retrain your brain on hearing differently. I agree with Julie that it doesn't take too many hearing tests before you start to remember those words (they call them spondees, I believe). Some audiologists use recordings for these words. It's to make sure that the volume of the words are consistent. I hope that one day the hearing system could be tested without our input. Heck, Dr. McCoy would be able to do it (this is a pun if you're not familiar). One thought comes to mind. Since most hearing loss is in the high frequencies and because the high frequencies are picked up near the opening of the cochlea, a hybrid device may be a consideration for the implant. The electrode array is shorter so as to not disturb the innermost part of the cochlea, which receives the low frequencies. The CI processor will function as a hearing aid so it amplifies the low frequencies and these sounds enter the cochlea as they normally do (air conduction). I know that Cochlear America makes a hybrid but I don't know if Med-El or Advanced Bionics offers a hybrid.
Tony in Michigan

REPLY
@tonyinmi

@billchitwood @julieo4 I've never heard of a CI making your hearing worse but I have to imagine it's because of the learning curve needed to retrain your brain on hearing differently. I agree with Julie that it doesn't take too many hearing tests before you start to remember those words (they call them spondees, I believe). Some audiologists use recordings for these words. It's to make sure that the volume of the words are consistent. I hope that one day the hearing system could be tested without our input. Heck, Dr. McCoy would be able to do it (this is a pun if you're not familiar). One thought comes to mind. Since most hearing loss is in the high frequencies and because the high frequencies are picked up near the opening of the cochlea, a hybrid device may be a consideration for the implant. The electrode array is shorter so as to not disturb the innermost part of the cochlea, which receives the low frequencies. The CI processor will function as a hearing aid so it amplifies the low frequencies and these sounds enter the cochlea as they normally do (air conduction). I know that Cochlear America makes a hybrid but I don't know if Med-El or Advanced Bionics offers a hybrid.
Tony in Michigan

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I'm apparently unusual as I am now basically flat lined in the severe range - Both high and low are equally non-working! My family always maintained that I was never normal lol. I gather flat line can show in people with cognitive problems but they all swear that I'm not showing problems in that area. Still do all the financial stuff, including IRS, work all different puzzles, do genealogy (keeping track of a lot of family for relatives and friends), do all the house and yard work (at 81 the kids did take away my really high ladder! - scared them to death). Dr W thought I didn't notice the emergency vehicles when I was driving because I wasn't paying attention to what was around me. Not true - I saw them because I was paying attention - just couldn't hear them.

And speaking of outside jobs I need to tackle a Palo Verde that has decided it wants to take over the driveway - those trees are downright mean with their thorns! In the meantime wishing everyone else a beautiful Fall with no mean trees - just beautiful colored leaves to enjoy, along with apple cider and pumpkin pie and for those of you not in Phoenix area, a lovely fire to curl up next to.

REPLY
@billchitwood

I completely failed the noise test! Got an F. In the quiet word test I think I got over 80% - both of these tests were using the new hearing aids. Unfortunately very little hearing in life is done in a quiet 'good' small room.

I'm not sure how long I can keep the loaners as haven't heard back from Dr Le - although I have a feeling as long as I'm still under consideration for the CI she will work around it. At this point I'm more inclined to trust the experts rather than family or even myself. Dr Le had me feeling confident and Dr W scared the heck out of me. So at this point I would be flipping a coin rather than using logic. Dr Le would understand what Dr W is concerned about and know how to process it without emotions (fear) getting in the way. At the moment the loaners are working better - in a one on one situation than the trial pair. Tomorrow I'm joining my tribe for Sunday lunch - they are all a very talkative bunch with a wide range of voices - extending from one Granddaughter who talks so low none of the family can understand her (she gets that from her Mom) to Robin who is expert at getting me to hear her. So that should be a good test of these HAs anyway.

Everyone wishing you a great weekend. Our weather has turned perfect. Only problem is the bugs are out enjoying it as well so itchy places where they stopped to dine on me.

Jump to this post

Wondering if you've tried a streamer with the hearing aids, or if your audiologist even mentioned those to you? There are some terrific assistive technologies that work in noisy social settings. Also some strategies about where to sit or stand. I've been carrying an 'extension microphone' around with me since learning about them back in the 90s. It isn't perfect, but it sure helps. You are using Phonak products. Did the audi tell you about the Roger Pen mike?

Enjoy the time with your family. Smile a lot and try to pull those grand kids aside for some one on one conversation. I'm doing just that, this weekend as I'm at 'Parents/Grandparents weekend' at UW LaCrosse. đŸ™‚ Let the good times roll!

REPLY
@julieo4

Wondering if you've tried a streamer with the hearing aids, or if your audiologist even mentioned those to you? There are some terrific assistive technologies that work in noisy social settings. Also some strategies about where to sit or stand. I've been carrying an 'extension microphone' around with me since learning about them back in the 90s. It isn't perfect, but it sure helps. You are using Phonak products. Did the audi tell you about the Roger Pen mike?

Enjoy the time with your family. Smile a lot and try to pull those grand kids aside for some one on one conversation. I'm doing just that, this weekend as I'm at 'Parents/Grandparents weekend' at UW LaCrosse. đŸ™‚ Let the good times roll!

Jump to this post

I brought them up and she wanted to wait and see if the HA worked before ordering them. Bill is using a TV streamer and helps us out, although he has it so loud in his ear that I can hear it from his HAs and daughter Robin can even hear it in the kitchen (this is with the TV muted for the rest of us. I can't make out the words so doesn't help me but Robin can even hear the words.

Have a wonderful time at UW LaCrosse. Son Craig is moving from Madison this month to Phoenix! Part of my Irish clan settled in Fond du Lac county in around 1848 or so - McNeely. My Mom used to visit their farm in the summer. She and her cousin collected dried cow pies to see who could get the most. I have a strange family lol.

REPLY
@billchitwood

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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I too am looking at Cochlear Implant. Very good information. Thank you.

REPLY

Talk about weird. Lately with the new loaner HAs I've had problems with my right ear (the worse ear and one suggested for CI). You know how when you fly or are in high altitudes your ears can feel stuffed and you yawn to try and pop them open? Well, this is happening on the right side. At first I thought it was the wax guard so kept replacing it and it only helped briefly.
Then last night I was on speaker phone with son and daughter and having major problems with the right HA going in and out like that. By accident I leaned on my right hand with the finger pressed against a bone between the ear and face. HA popped and I could hear without a problem. If I removed the pressure it went back to the muffled sound. Same thing this morning while talking to my husband. Looks a little weird walking around talking with my finger pressing the bone at my right ear. No effect on the left ear - which is behaving itself with the HAs.
Has anyone else come across this problem? Doesn't seem like it could be the wax guard.
I sent an email to Mayo doctor letting her know about it. I presume she talked to Dr W, the surgeon but I haven't heard back yet (meeting with him was over a week ago). In the meantime I'm still using the 'loaners' which were acting better than the ones I was in process of trying. The surgeon thought the CI might not help and could make the hearing worse (or maybe better) - he was on the edge of which way to go. Suggested trying the HAs for another 3 months. Using loaner HAs at the moment and not sure how long I can do that.

REPLY
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