If you're about the get a Cochlear Implant please read this

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RonJaxon

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I felt this was worth sharing. At the time I'm writing this my CI was activated a month ago. Like I'm sure all of you who are are have gotten your CI. We do our homework and read opinions and experiences of others. But there are a couple of topics that I don't see mentioned very often so I thought I'd bring them up here for discussion.

So if you're about to get your CI or looking into getting one. It's very important to have realistic expectations. I've read that some people are very excited when they get theirs turned on. Some even get very emotional. But another thing that can possibly happen if you don't have realistic expectations is you could later get a little depressed when you realize your hearing still has limitations. Don't get me wrong and I'm not trying to scare anyone. I just think it's important to realize this. I've had mine for a month and I don't regret the decision in the least. I'm loving it and I'm hearing better everyday. But if I didn't have realistic expectations I would have been frustrated. It takes time, work and patients to get use to it. Nothing will sound right at first. Don't let that discourage you. Keep going and I promise those buzz and squawk sounds will eventually turn into sounds that you can recognize.

Because I understood this so I didn't get frustrated when sounds didn't sound right to me. Instead I was able to be thrilled with the fact that I heard them at all. The first couple of weeks, actually even today, I smile and blurt out "I just heard that!" when I discover a new sound. Had I not had realistic expectations I probably would have gotten frustrated because what I heard didn't sound like what it was. When that happens just be glad you heard it then wait a little while. That sound that didn't sound right to you will soon sound like what it is to you and that's another thing to be thrilled about. So that's one sound discovery and two accomplishments!

Most of us can eventually understand speech. It'll take time and effort. But you'll still have some limitations. You'll likely still have to have some things repeated every now and then. I can already pick up some words here and there and I'm just getting started. And what little I do pick up makes me excited. At my last mapping I got a little teary eyed when I realized how much speech I was picking up compared to a couple of weeks before. Not to mention the fact that before I got my CI I couldn't pick up any speech at all.

Trust me. Keeping realistic expectations will allow you to enjoy your small accomplishments and also raise your potential. Be glad that you are able to hear at all then when you exceed those expectations it's even more for filling. I didn't expect to be able to understand any speech for a few months so when I could do it in my first month it was like icing on the cake.

Ron Jaxon
 
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Ron, I'm very excited and happy for you. One good thing to remember is that b/c you were hoh before, (even thou you haven't heard for twenty years) you have an advantage over born or early deafened folks, who didn't have any residual hearing with HAs.
But if I didn't have realistic expectations I would have been frustrated
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Ron, do you think that some of the marketing for CI is kind of " here's the latest most modren technological gadget? You'll be able to hear at hoh levels no matter what your previous loss/history was/is?"
I do remember the same thing happening when digitals were really new (mid 90's)
Are you going to be happy with whatever it gives you, even if you don't reach hoh listening levels?
 
RonJaxon said:
I felt this was worth sharing. At the time I'm writing this my CI was activated a month ago. Like I'm sure all of you who are are have gotten your CI. We do our homework and read opinions and experiences of others. But there are a couple of topic that I don't see mentioned very often so I thought I'd bring them up here for discussion.

So if you're about to get your CI or looking into getting one. It's very important to have realistic expectations. I've read that some people are very excited when they get theirs turned on. Some even get very emotional. But another that can possible happen if you don't have realistic expectations is you could later get a little depressed when you realize your hearing still has limitations. Don't get me wrong and I'm not trying to scare anyone. I just think it's important to realize this. I've had mine for a month and I don't regret the decision in the least. I'm loving it and I'm hearing better everyday. But if I didn't have realistic expectations I would have been frustrated. It takes time, work and patients to get use to it. Nothing will sound right at first. Don't let that discourage you. Keep going and I promise those buzz and squawk sounds will eventually turn into sounds that you can recognize.

Because I understood this I didn't get frustrated when sounds didn't sound right to me. Instead I was able to be thrilled with the fact that I heard them at all. The first couple of weeks, actually even today, I smile and blurt out "I just heard that!" when I discover a new sound. Had I not had realistic expectations I probably would have gotten frustrated because what I heard didn't sound like what it was. When that happens just be glad you heard it then wait a little while. That sound that didn't sound right to you will soon sound like what it is to you and that's another thing to be thrilled about. So that's one sound discovery and two accomplishments!

Most of us can eventually understand speech. It'll take time and effort. But you're still have some limitations. You'll likely still have to have some things repeated every now and then. I'm on my first month and I can already pick up some words here and there and I'm just getting started. And what little I do pick up makes me excited. At my last mapping I got a little teary eyed when I realized how much speech I was picking up compared to a couple of weeks before. Not to mention the fact that before I got my CI I couldn't pick up any speech at all.

Trust me. Keeping realistic expectations will allow you to enjoy your small accomplishments and also raise your potential. Be glad that you are able to hear at all then when you exceed those expectations it's even more for filling. I didn't expect to be able to understand any speech for a few months so when I could do it in my first month it was like icing on the cake.

Ron Jaxon
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Ron, sounds like you are coming along well and glad you have realistic expectations. The pace of progress seems to vary widely from what I have learned. Congrats and best luck
 
I totally agree with you! I believe that everyone should have realistic expectations. It's like when people get new limbs etc they have to go through tons of rehab to learn how to re-use what they had before. Even though some CI people have never heard much sound they still need to rehabilitate their brain to know what everything should sound like. I as a once hearing person know that things aren't easy. I went from hearing to deaf in a bit over a year. So, If I get implanted I know things aren't gonna sound perfect right away but that hopefully eventually I can gain back a lot of what I am missing now :)
 
Ron, ur words flow so beautifully! Wishing you the very best with ur courage, patience and willingess to advise others on the CI issue.
 
I'm not even expecting to hear anything right off the bat when i get the left ear implanted. I know it's going to take time.
 
Oh, you'll most likely hear "Sounds" right away. Not a lot but some. And things won't sounds right at first. But in time it will improve.

The first thing I heard was something that sounded like static. But was just the air coming into the room.
 
That was nice of you, Ron, to create this thread. It is better than those other threads making all the hype about CIs that make a deaf person like a hearing person overnight.

Yours sounds much more on a realistic level.
 
RonJaxon said:
Oh, you'll most likely hear "Sounds" right away. Not a lot but some. And things won't sounds right at first. But in time it will improve.

The first thing I heard was something that sounded like static. But was just the air coming into the room.
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that reminds me of a sound I kept hearing. It was full of statics, and couldn't make out of it. I kept hearing this "static" but I couldn't figure out the source of the sound. It sounded like a static ocean waves. So one day, I asked my husband what that sound was and he asked me "What sound?" I said "That sound"... he still couldn't figure out. when I told him that I hear it again, and he said, "ohhhh, that sound! That's the traffics outside in the rain" all a sudden, my brain just click and the sound began to like a car in the rain instead of static. It's really weird because all these years, it sounded like a static ocean wave, and ever since my husband told me what it was, it doesn't sound like a static ocean wave anymore.
 
As a recent implantee, I thought this is a GREAT post! I also had realistic expectations which I believe helped formed my response to my CI. It does sound like "Well, the CI must not be "all that" if you had to have low expectations in order to appreciate it." It is pretty awesome, but I think people just don't comprehend how complex hearing is.

Regarding to what Ron said about "air coming into the room.", it reminded me of what happened yesterday. I bought some weather stripping for the bottom of my front door. As I kneeled down to the bottom of the door, I realized that I can hear the air coming through gap. After I installed the weather strip, I knew it worked because I couldn't hear the air coming in anymore. So COOL.

(Of course, it isn't that useful since you can always put your hand out to feel for any drafts.. ;) )
 
Ron, It's a very good realistic post, should be made sticky.

This is one of reasons why Cochlear have Cochlear advocate, AB have Contact Network, they train people to help potential candiates. I have been trained and had few patients of similar age and length of deafness. I have heard from one patient had done well with hers. And another had chosen not to go through with it. I am seeing another on thursday.

When I was being trained, they told us to be very honest with our experiences, obviously they knew we all had been through bad patches and want us to share the good and the bad to the potential candiates to give them realistic expectations of what might happen to them. I talk to Cochlear Advocate manager if i feel this person is expecting too much or not expecting it would take a lot of work etc so that the CI centre knows what to expect too.
 
yeap, random weird sounds I probably would hear with the implant, but I'm sure it'll take me a while before I recognize anything as I haven't heard anything with the left ear in oohh 15ish years, no hearing aid in left ear for 15 years, etc. Left ear is 100% deaf, there's no ossification or blockage, so we'll see what happens. Hopefully sometime this week I'll find out more on the appeal to Medicaid, see if it worked out. I also sent a message to our state Medicaid/health department, requesting they double-check their implant coverage for adults guidelines and do some research on what a cochlear implant does, explaining how their "patient must have no means of communicating to make medical or personal needs known" clause truly does not fit in with the rest of their cochlear implants coverage guidelines. So hopefully that'll make a difference somehow too.
 
Good luck cdmeggers. Of course we'll all have a little different results but I'm sure you'll love it. I know I do. The biggest things I would warn you about are to be prepared to make many trips to the audiologist. Mine is a 2 hour drive away and I've made that trip over a dozen times in the last few months and I've got more to go. Also, be prepared for the hardest part and that's the wait. Wait for insurance. Wait for surgery. Then a couple of days after the surgery you'll likely feel just fine (still gotta take it easy of course) and you'll be anxious to get it turned on. But you'll have to wait a few weeks or a month before activation. But trust me. Once it's turned on and you look back you'll realize that it wasn't as long as it seemed. To me right now the entire process is almost a blur because of all the sound I'm picking up now.

deafdyke said:
Ron, do you think that some of the marketing for CI is kind of " here's the latest most modren technological gadget? You'll be able to hear at hoh levels no matter what your previous loss/history was/is?"
I do remember the same thing happening when digitals were really new (mid 90's)
Are you going to be happy with whatever it gives you, even if you don't reach hoh listening levels?
Click to expand...

Sorry I didn't reply to this sooner. For one thing anytime there is more then one company making a single product there's going to be heavy advertising to get customers to use their product. So they are all going to stress their stronger points (Smaller, better sound, most popular, etc...). If they are lying about these things then they'll eventually get called out. For example the N5 claims to be the smallest. It is so they are safe with that claim.

My advice to anyone looking into them and making their decision is to read their sites and ads. Then ask people who have the CI and get their opinion. That way you get "claims", "claims verified" and well and opinion and advice. Many choose a particular brand for a number of reasoning from size, number of batteries or even by the color they come in. Go to the forums of each brand and you'll find people who got them and are happy with their decision.

So basically I don't see any marketing and claims that aren't reasonable. I was never told it was a miracle cure or that I'll 100% be able to understand speech. None of the brands claimed that to me. I made my decision to get the N5 because of the long standing of the company, other peoples opinion, it's small size and the remote control.

Ron Jaxon
 
Thanks Ron

VERY interesting and good thread. Excellent information. I'm due to get my implant on 2/5/10 . I also chose the N5 due to long time company has been in business as well as small and being able to use remote. I've had aids with remote and it's handy as long as one does not misplace. Going to be interesting as I have no idea what "normal" is. I've worn aids for over 50 years and finally to the point that they do not help comprehension. I'm looking forward to it and as I'm not a spring chicken anymore, time seems to fly. I'm retired and I wonder where and how I found time to work. I'm also new to this group as you probably know but looks like a real good one. Thanks for your thoughtfull post.
Rampratt:wave:
 
I also sent a message to our state Medicaid/health department, requesting they double-check their implant coverage for adults guidelines and do some research on what a cochlear implant does,
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CD, maybe emphasize that you're perilingal (you went deaf at two right? Perilingal means that you lost your hearing while aquirring language) It's possible that the people in charge of Mediaid may think you're prelingal and see implanting you as a high risk that may not be "cost effective"
Point out that you did have hearing with an aid for quite a few years, and your brain knows how to process sound. It's still a big ? as to how much benifit you'll get with CI, since you've been deaf for many years, BUT you would seem to be a better canidate then someone who is prelingally deaf and hasn't worn hearing aids for a while.
 
Medicaid specifically stated that they denied my implant request because I could communicate via speech (and with the "must have no means of communicating" clause in place, boom immediate denial for me). But hopefully with my message, and with Advanced Bionics doing my appeal, they'll somehow get their guidelines straightened out. Rest of the implant guidelines is right on, just the no communicating bit that does not fit the rest of the guidelines.


and I'm aware there'll be multiple trips to the audiologist. You're lucky it's only 2 hours, for me it'd be 6 hours to the CI center, then 6 hours back. Hm yeah that'll be fun to deal with haha. Hopefully my current job will be understanding and flexible once I do actually get the implant. Only time will tell I suppose. Once I know of how the appeal turned out, and I definitely am able to get the implant, then I'll start working things out with my supervisor.
 
Medicaid specifically stated that they denied my implant request because I could communicate via speech (and with the "must have no means of communicating" clause in place, boom immediate denial for me). But hopefully with my message, and with Advanced Bionics doing my appeal, they'll somehow get their guidelines straightened out. Rest of the implant guidelines is right on, just the no communicating bit that does not fit the rest of the guidelines.
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That's really weird. Unless they put that in for a failsafe so that a certain population wouldn't abuse getting CI. Point out to Medicaid that you're NOT getting CI b/c you're "upgrading and feel like you need the latest technology" Point out that you do have VERY poor speech perception/ no perception in the ear you want implanted I think that might really help.
Ooooo.... would they pay for new hearing aids? Argue that you can't use a hearing aid in your "deaf" ear.
Have you contacted Let Them Hear? I'm not a HUGE fan of them, but this sounds like a legit case.
Oh you could argue that you're havign a REALLY hard time communicating orally, and you've maxed out totally on hearing aids. I wish i could help you!
 
RonJaxon said:
I felt this was worth sharing. At the time I'm writing this my CI was activated a month ago. Like I'm sure all of you who are are have gotten your CI. We do our homework and read opinions and experiences of others. But there are a couple of topics that I don't see mentioned very often so I thought I'd bring them up here for discussion.

So if you're about to get your CI or looking into getting one. It's very important to have realistic expectations. I've read that some people are very excited when they get theirs turned on. Some even get very emotional. But another thing that can possibly happen if you don't have realistic expectations is you could later get a little depressed when you realize your hearing still has limitations. Don't get me wrong and I'm not trying to scare anyone. I just think it's important to realize this. I've had mine for a month and I don't regret the decision in the least. I'm loving it and I'm hearing better everyday. But if I didn't have realistic expectations I would have been frustrated. It takes time, work and patients to get use to it. Nothing will sound right at first. Don't let that discourage you. Keep going and I promise those buzz and squawk sounds will eventually turn into sounds that you can recognize.

Because I understood this so I didn't get frustrated when sounds didn't sound right to me. Instead I was able to be thrilled with the fact that I heard them at all. The first couple of weeks, actually even today, I smile and blurt out "I just heard that!" when I discover a new sound. Had I not had realistic expectations I probably would have gotten frustrated because what I heard didn't sound like what it was. When that happens just be glad you heard it then wait a little while. That sound that didn't sound right to you will soon sound like what it is to you and that's another thing to be thrilled about. So that's one sound discovery and two accomplishments!

Most of us can eventually understand speech. It'll take time and effort. But you'll still have some limitations. You'll likely still have to have some things repeated every now and then. I can already pick up some words here and there and I'm just getting started. And what little I do pick up makes me excited. At my last mapping I got a little teary eyed when I realized how much speech I was picking up compared to a couple of weeks before. Not to mention the fact that before I got my CI I couldn't pick up any speech at all.

Trust me. Keeping realistic expectations will allow you to enjoy your small accomplishments and also raise your potential. Be glad that you are able to hear at all then when you exceed those expectations it's even more for filling. I didn't expect to be able to understand any speech for a few months so when I could do it in my first month it was like icing on the cake.

Ron Jaxon
Click to expand...

I agree 100%. I kept my expectations low and as a result I am pleased with my CI. I cannot understand speech but that is to be expected as I lost most of my hearing as a baby from chicken pox. But I am happy anyway because I get to enjoy music, and I think that is the best part anyway.

Good post, RonJaxon!
 
cdmeggers said:
Medicaid specifically stated that they denied my implant request because I could communicate via speech (and with the "must have no means of communicating" clause in place, boom immediate denial for me). But hopefully with my message, and with Advanced Bionics doing my appeal, they'll somehow get their guidelines straightened out. Rest of the implant guidelines is right on, just the no communicating bit that does not fit the rest of the guidelines.


and I'm aware there'll be multiple trips to the audiologist. You're lucky it's only 2 hours, for me it'd be 6 hours to the CI center, then 6 hours back. Hm yeah that'll be fun to deal with haha. Hopefully my current job will be understanding and flexible once I do actually get the implant. Only time will tell I suppose. Once I know of how the appeal turned out, and I definitely am able to get the implant, then I'll start working things out with my supervisor.
Click to expand...

I don't think medicaid people can make the determination if you qualified for Cochlear Implant or not as far as how well you can communicate with speech. I think your ENT and cochlear implant team make that determination if you qualify or not. Then they will talk to medicaid about it if you are a candidate (if they feel you can do better without cochlear implant, they will let you know). We all can fake good communication but it is still hard work.we have to concentrate twice as hard to get good communication so that's why I said Medicaid can not make that determination by talking to you.
 
Let Them Hear is not accepting any new appeal cases for who knows how long, last I checked. But I have Advanced Bionic's insurance reimbursement on the case.

CI audie also wrote a letter to Medicaid stating that I do need the implant and explained my poor speech recognition skills with hearing aid on, and etc. She even got the CI surgeon to sign off on the letter.
 
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