To Cochlear Implant or to re-Hearing Aid; know thyself what you want, my Deaf ears?

[ambrosia]

No, we, or at least I, meant "Dead." I had a severe-profoundly deaf ear that was implanted, but it was not dead. It had been aided with a hearing aid since the loss began and even in the end it was never completely without sound. By "Dead" I was referring to an ear that had never been actually used for hearing. It's been dormant. When you implant a dead ear, you aren't going to have the same results as someone implanting an ear they've been using all along.

Oh yeah duh. Clearly I didn't read the post benonang quoted, just her comment. Dead actually makes more sense than deaf there.

 

[SBirn]

Bleeding Purist

You have two things going for you. Number one is that you have very low expectations, so any gains from here will be appreciated. Number two is that you don't just give up. That one is the most important to moving beyond the ducks. I do know what you are trying to describe. It really is a lot like the hearing equivalent of being in a dark room for years and then the door opens and you are blinded by light, not seeing/hearing the details. With time, that will come more into focus. It is not likely you will hear ducks from here on out.

By keeping the processor on during all waking hours you'll build your tolerance and be able to get those high frequency levels up there. Hopefully, you will be able to get your levels pretty much uniform. I'm hoping the best for you! How often do you go to mappings? I believe it's a drive for you so you only go so often?

Bleeding: I'm in Asheville and I'm going to Vanderbilt in Nashville. That's a 5 - 6 hour drive. I have gone for mappings 1 to 2x a month but I get a break in Jan. except, it's also odd, I have a mapping scheduled for Feb. only because I have a follow-up with the doctor and happened to mention it to Susan, so she scheduled me for the same day. Without mentioning this to her, the mapping would not have happened. I have little to change as 3 of the 4 mappings seem useless. I do change them per her directions. I do not notice the difference.

Yes, of course, my expectations are realistic and low but for me only - so don't any of you get any ideas they will not work for you. If one grows up hearing and everything one reads that says "normal" hearing cannot be expected and there will always be some sort of mechanical sound that is what I will believe. (You already know that's what commercials are based on, CP. You say it once, the receiver will not remember it. Years ago, you had to hit the magical number of three repetitions to lodge the product in the consumer's mind.)

My question to you remains: How could a (smart) guy with a CI pick up the phone ONLY if he knows who's calling? I used to do that with my HAs (people would know if I said something stupid, I likely did not understand them) but cannot do it due to true gibberish with the CI. I do not understand. While brain processing is unique, is this really a possibility?

Yes, BP, my expectations are low and oddly, I agree, that is in my favor. If I believed how our government worked for the people (us, not corporations) and knew that we were told the truth, this would be different. But we are not told the truth for many, many reasons.

Humble and sincere thanks. I do believe your responses more than any CI reps and quite honestly, more than my audiologist's answers. They are in the business. You have your experience and a bit of faith.

 

[BleedingPurist]

My question to you remains: How could a (smart) guy with a CI pick up the phone ONLY if he knows who's calling? I used to do that with my HAs (people would know if I said something stupid, I likely did not understand them) but cannot do it due to true gibberish with the CI. I do not understand. While brain processing is unique, is this really a possibility?

In my experience, after so many years of having the phone sit and ring like a demon taunting me when I couldn't answer it unless I knew the caller (which amounted to one person, my Mom.. and even that was hell,) it becomes habit even after you are perfectly capable. It's still a trip for me seven years later when I use phone. There are many habits we develop when deaf that persist even with new-found abilities.

It is important that you do a lot of rehab, despite the existing sound quality. Listen to audiobooks or talk radio. Do exercises such as AB Clix if you have an iPad. There are many resources.

Keep this in mind... I didn't fully realize I was capable of hearing what I could until I decided to call my parents on a whim, expecting it to be the way it had been. It was only when they answered that it hit me that I was actually hearing them, not guessing. It's important to take away the visual we rely on so heavily to really wake up the auditory part of your brain.

 

[SBirn]

Wow Bleeding - What a Livid and Well Posted Response

Dupe and removed.

 

[SBirn]

Wow Bleeding - What a Livid and Well Posted Response

In my experience, after so many years of having the phone sit and ring like a demon taunting me when I couldn't answer it unless I knew the caller (which amounted to one person, my Mom.. and even that was hell,) it becomes habit even after you are perfectly capable. It's still a trip for me seven years later when I use phone. There are many habits we develop when deaf that persist even with new-found abilities.

It is important that you do a lot of rehab, despite the existing sound quality. Listen to audiobooks or talk radio. Do exercises such as AB Clix if you have an iPad. There are many resources.

Keep this in mind... I didn't fully realize I was capable of hearing what I could until I decided to call my parents on a whim, expecting it to be the way it had been. It was only when they answered that it hit me that I was actually hearing them, not guessing. It's important to take away the visual we rely on so heavily to really wake up the auditory part of your brain.

Very impressive writing. I mean that in all sincerity. I see a strong amount of, "Lessons Learned." Hopefully, I can describe a similar feeling and story. For the first time since the implant (10/13), we went out with real friends (dinner) at their lovely home last night. As Seinfeld characters would say, "Yada, yada, yada." Lovely time was had and my partner and I are in the car headed home. Her first question to me was, so how was it compared to wearing your hearing aid - on a scale of 1 - 10 where 10 is I was absolutely comfortable hearing everything. Honestly, I don't know what a 10 is and haven't for too many years, for such a young chick as I am . I gave the CI a 3 and the aid got a 2 from other visits.

A few minutes later I ask her, "So, on a scale of 1 to 10 how did I do? " She said "... an 8. You were comfortable talking, and you responded when appropriate." (This is what I remember and is close enough.) I said I did not have the old tools to cheat with so I couldn't guess what was being said. I understood it or I didn't. At this time there is NO intonation, no guessing the number of syllables, no cadence - no nothing of the old tricks I have probably been using for 35 years. I had to rely on my real comprehension of sounds. For the first time in many many years I did not feel that people thought I was a dope or quirky (can't be a snob anymore when one does not hear and that's fine as well - at least I know it). I anticipated speaking and understanding less and was spot on. BUT it was not a bad experience. Darn right you are (BP, I mean you).

Interesting. Socialize and NOT feel I said something stupid is rather amazing.

Serious thanks again. I'm on now and will turn off the duck shortly. But I will pursue this more of the time. The Daisy duck all around is what makes me really nuts. I'm also pretty disappointed about the phone. Not a woe is me. But it does show you how much a good researcher (me and my partner) didn't do a very good job at a critical time. My partner did better and was concerned (scared as to what would happen on the other side of the surgery - that should make sense now from one perspective). The question will remain is can I exist surrounded by ducks? I will try to get past that as difficult as it will likely be. The telephone stuff annoys me.

I'm getting the answers from you, BP. I knew about activating the brain (or as we call them creating new pathways for sound to be processed since the old way is dead). The rep from the CI companies would not and probably could not tell me this stuff and someone should have. The audiologist didn't say this either perhaps due to lack of time prior to surgery (except that has to be made or it's very unfair). THAT's key to why I am so skeptical of corporate America. I'm thankful again for your answers. Truth is better than no truth or misleading information.

 

[green427]

Keep this in mind... I didn't fully realize I was capable of hearing what I could until I decided to call my parents on a whim, expecting it to be the way it had been. It was only when they answered that it hit me that I was actually hearing them, not guessing. It's important to take away the visual we rely on so heavily to really wake up the auditory part of your brain.

That is true.

I tried practicing on the phone with just one CI, and it was difficult, although a handful of people like my sis were crystal clear. After a few years I eventually gave up calling people.

It wasn't until recently when I was in my boss' new car when he made a call to another person, and I was picking up a lot more sentences than usual....so, when I got my new car, which has a Sony 10 speaker system, I called my parents through the car's BT connection, and I was shocked to hear how crystal clear they were. It was a combination of two CI's and multiple speakers in all the right places that made it work much better.

I can talk to the same person on a cell, speakerphone, landline, or in a car, and the clarity is never the same.

Unfortunately for me, if I want to make a voice-only call, my car is the only place so far. One thing I haven't tried is the personal audio cable directly to my cell....keep forgetting to do that.

 

[HOH-ME]

See subj.

1. When
2. How long could you hear say in the moderate range before you rec'd the implant? (For me - it was probably @30 years ... maybe longer.)
3. Did you wear HAs?

I'm trying to understand why I'm sort of flipping out with this stuff. I'm going to a place that serves the deaf & HoH on Monday because I am so overwhelmed with the sound - that thing my 2nd ENT was concerned about in particular with me. That's also why he immediately said to just start with one CI rather than two.

My hearing (while duck-like) is better when I can understand what has been said. I no longer sound stupid guessing what was said because I can't. I hear more pure tone but less voice. I have a mapping for background noise but it's not right and I assume after the Miracle Ear fiasco it actually works.

Thanks.

I had sudden loss about 18 years ago that gradually declined. My speech scores before my implant were in the 18% range, at 3 months post implant they are in the 90% range. I wore HA's for 17 years. I'm supposed to be wearing my left HA but it's just worthless for me so I'm not very good about it. Going bilateral soon--hopefully Feb--meeting with the ENT in a couple weeks.

Sounds like you need to keep working on your mappings. Do you do any rehab with Angel Sounds or anything like that? What are your settings? I have an IDR of 70, thinking about going to 75. My M levels are in the high 200-low 300 range for the most part. I have Advanced Bionics and I think that makes a big difference too. I hear music very well, can talk on the phone, do great in large crowds, etc. I have problems with some sounds/voices still being very mechanical/mickey mouse but they are getting better.

What different settings have you tried? Are you good at communicating what is going on with your hearing with your Audi? Are you using Vanderbilt's CT mapping strategy?

 

[SBirn]

lol ... I'm used to HA speak. I don't understand much of what you ask!

I had sudden loss about 18 years ago that gradually declined. My speech scores before my implant were in the 18% range, at 3 months post implant they are in the 90% range. I wore HA's for 17 years. I'm supposed to be wearing my left HA but it's just worthless for me so I'm not very good about it. Going bilateral soon--hopefully Feb--meeting with the ENT in a couple weeks.

Sounds like you need to keep working on your mappings. Do you do any rehab with Angel Sounds or anything like that? What are your settings? I have an IDR of 70, thinking about going to 75. My M levels are in the high 200-low 300 range for the most part. I have Advanced Bionics and I think that makes a big difference too. I hear music very well, can talk on the phone, do great in large crowds, etc. I have problems with some sounds/voices still being very mechanical/mickey mouse but they are getting better.

What different settings have you tried? Are you good at communicating what is going on with your hearing with your Audi? Are you using Vanderbilt's CT mapping strategy?

Thanks, HOH for responding. You already know that I wore HAs for @50 years.

I have no idea what Angel Sounds is. I only can tell you what the four programs are for and I use one (to wear the processor on my shirt). The first two are for men and women's voices (there's little difference). The third is for background noise (to me useless).

In terms of communicating:
1. People must speak slower (not necessarily slowly) and enunciate. If they speak slowly and don't enunciate it doesn't work. So, I'm better at understanding my partner. The audi is okay.
2. What is Vanderbilt's CT mapping strategy? I go to Nashville the day before my appt. I see whoever, have an audiogram and leave for a month.
3. I do not know what IDR or M means.

I am also going to be evaluated tomorrow by a local deaf and hard of hearing place to see where they can help and likely refer me out. I emailed places looking for help and my partner called. Where I am is more isolated than I was before and that is not good. Asheville is lovely but they do not do implants, so finding help here is difficult.

I opted for Advanced Bionics despite some issues with their rep.. The good thing was that after surgery, I managed to get the (processor plastic clip so I could wear it on my shirt and I didn't pay anything). That was worth what I went through .

So, here I am in a world of ducks and a new world of lingo I do not understand. I also believe this makes me look pretty naive (I'm being politically correct to myself). You all should (not must) trust me that I literally ran out of time choosing a brand without an audi (I threw all the marketing brochures I first received in recycle), using a rep who was not forthcoming (?) enough, was told TWO weeks before the implant it was approved and we were moving forward and I did what I could in the event this would happen and had little time. The audiologist did not show up until we knew I qualified makes sense but killed the learning process. That was all pretty insane.

I could go on but this is enough for you to understand I literally had no time to get through this in a a logical fashion to gain an understanding of what I was getting into. My hearing had gotten a lot worse and my partner had to explain my stupid responses more. We stopped going to dances because I couldn't hear. I relied on what other people were doing or holding a column (used bone conduction) to get the beat and looked like a lunatic. My sign language teacher came over and immediately knew what I was doing vs. the woman coming over thinking I was ill ...

Time to got out and get some "healthy" biscuits and gravy. Boy, is that one heck of an oxymoron.

Thanks, HOH-ME,
-- Sheri

 

[HOH-ME]

I hope I'm ok putting this link here:

Angel Sound - Interactive Listening Rehabilitation and Functional Hearing Test Program

This is a rehab site for working with your CI and developing sounds. If you are not already, you should probably join the Advanced Bionics Hearing Journey site. There is a wealth if information there.

The IDR is the input dynamic range--basically how much sound you processor is letting in. Many audis use a setting of 60 but users are finding better hearing with settings in the 70-75 range.

M levels are those beep tones they work with at your mappings, the ones you have to tell them are soft, comfortable, loud, etc.

The Vanderbilt CT strategy is a new mapping strategy using a CT Scan from pre/post surgery. Are you going to Vanderbilt or some other clinic? You should really be seeing the same audi for your mapping sessions. If you don't know any of the above, perhaps a new audi that can teach you more about your CI would be beneficial.

Have you done any rehab at all yet?

 

[SBirn]

HOH-ME, Thanks for the link. I will use it and found an office locally where they will assist. Now, I'm not yelling at you , "I WILL NOT JOIN THE AB HEARING JOURNEY SITE." I'm sorry but Bleeding and I had a little battle on that one. I have an AB, though. I stumbled onto it not knowing it was AB. I posted a remark about understanding how a woman was scared getting her CI. I concurred. But when I got on the site, people were writing "oddly" and I noticed that immediately. The moderators/owners sent me everything is fine BUT ... note to remove my response by 10 p.m. or they would. I stand firmly when I say, "It's their website and can do what they want." But they removed my remark and want nothing negative or potentially so. It's not a journey if they remove truths - objective or subjective. (BP, do me a favor and let this be because the sky is not falling was ever denoted in my response.)

Thanks for explaining the other info. I'm going to the Bill Wilkerson clinic for mappings.

Rehab? I've gone in for mappings. Susan only does them.

Ah... the IDR. I attempted to ask that last session but said it wrong. Thanks for the right wording.

* * * *
I apologize for my ignorance and this was a problem. I did not have accurate from the reps or whoever or enough information about any of this before I went for surgery. It just happened that way. I can help fit anyone with a HA but CIs are way beyond me.

I will ask Susan (audi) about the CT Scan now.

 

[HOH-ME]

Rehab is practice listening to voices, sounds, etc. If you are not doing that, you are not giving your CI a fair shot.

I think you are missing out on getting help on Hearing Journey but whatever, it's your choice....

 

[cdmeggers]

SBirn wasn't happy with whatever happened at HJ.com. So be it, his/her choice to go back to HJ or stay away. There are plenty of resources available online, so it's not necessary to go to HJ.com. Can even just contact AB or audie if having problems with the CI for troubleshooting too.

 

[SBirn]

Our own journies

SBirn wasn't happy with whatever happened at HJ.com. So be it, his/her choice to go back to HJ or stay away. There are plenty of resources available online, so it's not necessary to go to HJ.com. Can even just contact AB or audie if having problems with the CI for troubleshooting too.

I do go elsewhere (like here). Hearing Journey denotes it is about people's experience with CIs. I logically went there in an attempt to learn. But if a user's experience is removed, it's not a true journey. It makes it more of a "made for tv" experience and brings viewers in. Please do not mix up my distaste for HJ with questions that would be posed to AB (my own rep) or my audiologist. I learned from my own experience that the "journey" of people has been sanitized. That is essence of why I don't go there.

HOH-ME and Bleeding Purist and so many others here have truly reinforced that hearing after a CI evolves. I trust what has been written and it has not been cleaned up. I do not see the owners of this site eliminating data. They left my comment about the world sounding like ducks and Bleeding Purist explained what was likely going on. So, I'm learning here (what I expected from the other website) and I fully expect my experience with the CI to get better in many ways. Due to HOH-ME and the others, I am wearing the CI even when my dog quacks and his tags clank. I wore it driving yesterday and today. That's what y'all have been telling me (w/BP's bit that I'm not used to high frequencies and wearing the CI is the only way to hopefully make the ducks go away; man, BP seemed to hit that on the nose). This is a picture of a real hearing journey and that is the difference.

 

[HOH-ME]

I do go elsewhere (like here). Hearing Journey denotes it is about people's experience with CIs. I logically went there in an attempt to learn. But if a user's experience is removed, it's not a true journey. It makes it more of a "made for tv" experience and brings viewers in. Please do not mix up my distaste for HJ with questions that would be posed to AB (my own rep) or my audiologist. I learned from my own experience that the "journey" of people has been sanitized. That is essence of why I don't go there.

HOH-ME and Bleeding Purist and so many others here have truly reinforced that hearing after a CI evolves. I trust what has been written and it has not been cleaned up. I do not see the owners of this site eliminating data. They left my comment about the world sounding like ducks and Bleeding Purist explained what was likely going on. So, I'm learning here (what I expected from the other website) and I fully expect my experience with the CI to get better in many ways. Due to HOH-ME and the others, I am wearing the CI even when my dog quacks and his tags clank. I wore it driving yesterday and today. That's what y'all have been telling me (w/BP's bit that I'm not used to high frequencies and wearing the CI is the only way to hopefully make the ducks go away; man, BP seemed to hit that on the nose). This is a picture of a real hearing journey and that is the difference.

That has not been my experience with HJ

 

[SBirn]

I know and I'm really thankful for that for you!

That has not been my experience with HJ

I look and recognize things others may not see. I'm glad for me and I am glad that others don't see what I do. It makes my life a little harder and yours easier.

 

[BleedingPurist]

Ah... the IDR. I attempted to ask that last session but said it wrong. Thanks for the right wording.

* * * *

I will ask Susan (audi) about the CT Scan now.

IDR is probably not on your radar at this time to be concerned with until you settle in to your implant. I am sure your audiologist probably has you on a conservative setting, necessary for the initial period. Raising the IDR lets more sound in and can make it unbearable if you aren't ready. Certainly, ask your audie about it! The more you know

The same probably goes for the Vanderbilt study, which involves analyzing CAT Scans to determine which electrodes may be causing overlap/channel interaction so that they can be shut off with the goal of increasing clarity. It might be something to consider down the line. It might even help if you cannot get the ducks to clear up that you turn off some electrodes, but that doesn't require the Vanderbilt approach.

There are many programming changes that can be done going forward to improve/change how it sounds to you. You did choose well when it came to your implant! At this point, the main focus is getting your nerve to be as fully responsible as possible before getting into all the other tweaks.

 

[SBirn]

No IDR and I don't know if I want another CATSCAN

IDR is probably not on your radar at this time to be concerned with until you settle in to your implant. I am sure your audiologist probably has you on a conservative setting, necessary for the initial period. Raising the IDR lets more sound in and can make it unbearable if you aren't ready. Certainly, ask your audie about it! The more you know

The same probably goes for the Vanderbilt study, which involves analyzing CAT Scans to determine which electrodes may be causing overlap/channel interaction so that they can be shut off with the goal of increasing clarity. It might be something to consider down the line. It might even help if you cannot get the ducks to clear up that you turn off some electrodes, but that doesn't require the Vanderbilt approach.

There are many programming changes that can be done going forward to improve/change how it sounds to you. You did choose well when it came to your implant! At this point, the main focus is getting your nerve to be as fully responsible as possible before getting into all the other tweaks.

Good timing, BP. I had it on my list of questions. Let more sound in? That would drive me more bananas. But it's weird because I had trouble understanding a woman who came to visit for a couple hours yesterday. I wanted to turn up but I knew it would just cause more problems and not allow her voice to be louder. The IDR will stay on the list for the audiologist in the future. We go back in a month. I had a Catscan at Chapel Hill. I had a Catscan at Vanderbilt. I don't believe in extending ones life but this is a little nuts. I won't even mention that unless the doctor does.

Susan turned off two electrodes (I don't know which ones). My left ear has a little bit of hearing but that works only through bone conduction. So, when I was talking, I heard my own voice and my duck voice. When she turned off the electrodes (or turned them down), my voice and my duck are about equal and that I can handle.

Thanks for reminding me. I just wrote my list of issues and stuffed it by the worn envelop I use each time I see her.

Nice seeing you back, Bleeding.

 

[cdmeggers]

the experience of getting used to the signals from a CI is definitely an interesting experience. I didn't truly hear anything at first when I was activated. for a few days it seemed like I was hearing a busy dial tone (like when you try to call someone but it's busy on the other end?). That was strange. and instead of hearing, I felt the sounds in my head, a truly odd sensation haha. But slowly, over time, my brain started making the connections that those things are sound and making sense of the different sounds. I could not tolerate high frequencies at all at first, it was just too much. Just needed to give it time for the brain to work everything out. Even wearing a HA and CI together at the same time was quite confusing at first but slowly got better too. Always interesting to see what each individual's experience is with their new CI's and how they're coping with that.

I've not had any issues with HJ, and have been happy with them for the most part. But I haven't been as active at HJ lately due to being busy with school, work, holidays, stuff like that. But it's cool. Like I said, plenty of resources online to utilize.

 

[Jane B.]

the experience of getting used to the signals from a CI is definitely an interesting experience. I didn't truly hear anything at first when I was activated. for a few days it seemed like I was hearing a busy dial tone (like when you try to call someone but it's busy on the other end?). That was strange. and instead of hearing, I felt the sounds in my head, a truly odd sensation haha. But slowly, over time, my brain started making the connections that those things are sound and making sense of the different sounds. I could not tolerate high frequencies at all at first, it was just too much. Just needed to give it time for the brain to work everything out. Even wearing a HA and CI together at the same time was quite confusing at first but slowly got better too. Always interesting to see what each individual's experience is with their new CI's and how they're coping with that.

I've not had any issues with HJ, and have been happy with them for the most part. But I haven't been as active at HJ lately due to being busy with school, work, holidays, stuff like that. But it's cool. Like I said, plenty of resources online to utilize.

I noticed it must have gotten to your ear blog as well with the last entry it pulls up for me being on October 14.

 

[cdmeggers]

yeah, I haven't had much going on worth reporting in my blog regarding my CI progress. yep.