If you're deciding on a CI or decided not to get one

RonJaxon

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There are so many opinions on Cochlear implants. I think it's important to separate the facts from the non-experienced opinions. By that I mean you can browse the internet and research about Cochlear implants and most of what you'll read are written by people who have no personal experience with a CI. Another common problem with this research is you'll also read a lot of out dated information. What was true ten years ago is not necessarily true today. Many advances have been made in recent years.

Now, who am I to talk about this. Well, I'm someone who has real life experience in this matter. I was HOH most of my young life but with hearing aids it was a minor issue. As I got older my hearing continued to decrease until I became deaf in my late teens and early twenties (Was a significant drop during those 4 or 5 years). I'll be 40 years old next month and I just had my CI activated last December (2009). So I lived almost 20 years deaf. The last voice I heard before my CI was when I was about 21 years old (I could hear a little then if it was very loud and low pitched).

So the short of it is I spent the first half of my life hearing (With mild hearing loss) the second half of my life deaf up till last year when I got my CI.

So here are some of the misconceptions I see as I research around online and even in this forum.

"I was tested and they said it won't work for me".

This could be true for some of you. But how long ago where you tested? I was tested back when the CI was first available and they told me that at the time the CI wouldn't work for me. They said I'd be able to hear "Some sounds" but not enough that it would be worth my time to get it done. So I didn't get it. Well, fast forward two years ago I talked to people who have the CI and found out how much they've advanced. So I got tested again and now they work for me. Today I'm talking on the phone, listening to music and having no trouble with everyday conversations. So, if it's been a long time since they said it won't work for you. I suggest you go in and find out if they'll work for you now if it's something you've always thought you might do someday when the technology advances. I'm not suggesting everyone should get it. I'm only saying that if you're going by what they said a long time ago then you should find out if that's still true for you today. If you have insurance it won't coast anything to find out. Just a hearing test basically. And if they say you are eligible that doesn't mean you have to. It just means that option is open to you now. Just don't depend on past advice. Go by what's true today.

"Getting the CI is dangerous".

Of course it is. It's surgery. But it's a low risk surgery. Most of the scary stories you might find are either very old ones from the days when the CI was new and experimental. Or are very, very rare cases. When you go through the process they'll give you a list of the risks involved and also the likelihood of those risks based on statistics. The highest percentage or risk was about 7% chance of that happening. And even if they did the effects are not permanent. OF all the people I've talked to who have a CI, the most serious side effect any of them have had is the temporary facial paralysis. And they no longer have that issue. Is it possible to happen? Sure it is. Not likely but possible. So many of these CI surgeries have been done that they've pretty much got it down to a standard procedure as far as surgery goes.

So what I'm saying here is to know the risks that exist TODAY. Not the risks that existed when they first came out.

"I read deaf people don't like people who have a CI."

So what! It's not their life you're living. It's your life. If you wanna hear and there's a technology that can give you that ability. Don't let anyone else opinion stop you. Besides, that negativity has died down a lot lately. It's still there of course but not as dominant as it was just 5 years ago.

I read things don't sound right with a CI.

FALSE!
Ok, sound with a CI doesn't sound like someone with "Normal hearing" would hear. But I've had mine a year and everything I hear sounds natural to me. I'm hearing music, I'm hearing peoples voices. I can tell this persons voice from that person.

Here's what happens. What you hear with a CI will not sound right at first. This is because you basically have to relearn how to distinguish sounds. Also know that the CI is not turned up all the way the first day. At first it's set very low then at each mapping session it's turned up and adjusted to your level. As you progress sounds start to sound clearer and clearer. By the time you're adjusted what you hear will sound "Normal" and "Natural" to you.

How I explain this to people is to use a metaphor. Have you ever put sun glasses on that have a colored lens? For example yellow lenses. When you first put them on you can still see the world around you, but it'll look strange to you for a while. But if you keep them on for a few hours things will start to appear normal to you. So much to the point that when you take them off again the way you see the world without the colored lens will look strange to you for a while. That's kind of what it's like. Once you're adjusted to it the way you hear then will be normal to you.

I want to wait for something better.

I look at it this way. Sure, technology will continue to improve. Something better always comes along. That's always going to be the case. If I wait another ten years there's still going to be "Something better" coming out after that. So it's a never ending wait. You'll never obtain the end of that process. So, let's assume for a moment that in ten years something better comes up and you get it. You've just lost ten years of sound (Assuming that's what you want).

Besides. Todays CI's are upgradeable without any additional surgeries (Which is another misconception that's floating around). Again, that comes from outdated information.

The funniest one to me is those who are waiting for stem cells. Sure, work is being done on that and some progress is being made. But you will not be able to have that done yourself for many, many years. For most of us the wait will be to long. Even if they have it perfected tomorrow it'll still be years before it's available to the general public. So much more research will be needed for that. Even when it works there will still be research on side effects. Perfected techniques, public opinion (Which as we know, it's not accepted by many today, especially some religious aspects). It's a "Someday" that makes as much sense as waiting to buy a car until they can fly. It can be done today but it'll be a long time before we have highways in the sky. So they'd spend the next couple decades walking or taking the bus simply because their waiting to get a flying car. :)

So basically make sure you're "Wait for something better" is a realistic expectation.

I've learned a lot from my experiences when it comes to my hearing. I'm so glad I got my CI and I couldn't be happier with it. I know there's a huge difference between someone like me who use to be able to hear, went deaf then got their hearing back and someone who was born deaf and never "Lost" their hearing. I knew what I was missing and I did miss sound. I missed the ease of communication and the sounds around me. What I've come to realize is that after the years of struggling to come to terms with my deafness (Because I lost the sense I once had) I finally was able to be happy with my life. But now that I can hear again I also realize that in some ways I was living in "Survivor mode" during most of my deaf years. I was doing the best I could with what I had and eventually learned not to dwell on what I lost. I know a person can live a happy and fore filled life without sound. But now that I got my hearing back I'm no longer in that "Survivor mode". What I lost is now back and the world has gotten much larger and easier to deal with for me. This is why I'm so glad I got mine and I encourage anyone who does want to hear to look into what's possible TODAY and only rely on the accurate facts. Don't take anyones word for it including mine. Do you're own research, ask your own questions and make your own decision. But, don't listen to anyones "Opinion" who doesn't have an experience in the matter. That includes the people here in AD. Listen to the reason they say they won't get one. But don't suspect they are an expert on a CI unless they've had one. Their reasons may be true to them and I respect that. But we each have our own minds and should make our own decisions on facts that are current.

Just thought I'd share some of my thoughts on this. I know there are some in here on AD that fit some of the things I mentioned above. Still some might find this during their "research" for I know I looked all over before I made my decision.

Just wanted to speak my mind on this. :)

Ron
 
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Ron, good post.

I do want to say though - I think for a lot of us...we just don't want one. No one accepts that answer, at least in the hearing world. I have been hounded by doctors and professionals about this answer and as a result we come up with things that will shut them up. "It is too dangerous and I don't want to risk my life" or any of the other reasons you gave.

I guess for some they are legitimate reasons, but I think for most of us it is just what we say when no one will accept that we don't want one and we just want to be Deaf. Many people have trouble understanding why on earth we would WANT to stay Deaf. Instead of having that debate with someone, making up a reason to not get a CI is just simpler!

I think it is great that your CI is working so well for you!!!!
 
awesome post Ron! hopefully when I am eligible for Medicare coverage in November this year, they'll approve the CI for me. Until then, all I can do is keep on waiting.
 
I support this post.
 
This is an excellent post. Very well written and to the point. Thanks for sharing!!!
 
Agreed. Good post.

And yes, JennyB. There are some that refuse to accept the fact that not all deaf/Deaf are dying to get a CI. Yet they expect that their reasons for wanting one will be accepted by all. Strange sort of irony, isn't it?
 
Good post!

Good post JennyB too. I had so many people asking me why I don't have CI even though I am so very Deaf. Instead of explaining them why (takes too much time and it happens far too often) I just say it is too much work and it probably won't work for me. That shut them up most of time, there still few say why to that.
 
Good post, but I was bemused at the part where it is false that things don't "sound right." But good post anyway.
 
Welcome back JennyB. We previously had convulted discussion -how it is possible a "deaf" person to use a hearing aid? As I pointed from my personal experience when I became bilaterally deaf- I didn't hear anything-just silence. My previous Phonak aid no longer worked-.either You keep asserting you wish/want to remain deaf apparently using your"aid" re Dec 31/10 comment-Nadia. My confusion-apparently.
As for being "hounded by ENT doctors/other professionals (audiologists?)" I am assuming you are referring the 3 doctors at Sunnybrook Cochlear Implant section/Toronto who actually do the operation.( This excludes Sicks Kids/Toronto as you aren't a "deaf" baby) I had to make appointments to see Dr J Chen who didn't come to my home to discuss the operation. I guess we live in different "segments in Toronto" it seems.
Presumably you aware of the" huge number" of Cochlear Implant operations at Sunnybrook/Toronto. In actuality over the last 18 years only 850 persons were implanted! Another interesting statistic-60% of all persons referred there are REJECTED on various "physical/psychological" grounds. This info from Sunnybrook at recent Implant patients meeting which I attended. I don't think Dr J Chen is part of Honest Eds trying to "drum up" Cochlear Implant business.
I can understand why "Alice in Deafland" is still around-words mean whatever I say which kind of make rational discussion "difficult".
Oh yeah JennyB apparently I still "hate myself" for getting an Implant. Seems the "deaf community"-wherever/whoever-didn't "approve it".Thus I am really NOT BILATERALLY DEAF. Is this DEAF BROTHER/SISTER GONE AMOK? Your friend Jillio is trying to discover what NON pathological/physical deafness is excluding- Self defined?

Welcome back JennyB. Cheers

Implanted Advanced Bionics-Harmony activated Aug/07
 
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Ron,

What a wonderful post. This is something I believe quite a few of us have trying to portray what it really is like having this device. Thank you for trying to bridge the gap from those unexperienced with these devices and are skeptic about what it really does.
 
DrPhil

I once again invite you to meet me, at any time in a nice well populated public place. Even at Sunnybrook - I am there often enough.

I am not engaging in a debate about my Deaf identity with you again. I am Deaf. period.

When I have gone into a doctors office for an ear infection, or a hospital, or met a new prof at school or whatever - I am quite often asked why I do not have a CI. Dr. Chen didn't ask me why not, nor did anyone else at Sunnybrook - at least in that department. It is a fairly common question. That is what I was referring to.

I am also curious why the other Deaf person (Speedy Hawk) was not attacked by you? Didn't they just say the same thing as me?
 
DrPhil

I once again invite you to meet me, at any time in a nice well populated public place. Even at Sunnybrook - I am there often enough.

I am not engaging in a debate about my Deaf identity with you again. I am Deaf. period.

When I have gone into a doctors office for an ear infection, or a hospital, or met a new prof at school or whatever - I am quite often asked why I do not have a CI. Dr. Chen didn't ask me why not, nor did anyone else at Sunnybrook - at least in that department. It is a fairly common question. That is what I was referring to.

I am also curious why the other Deaf person (Speedy Hawk) was not attacked by you? Didn't they just say the same thing as me?

He appears to be fond of attacking the female members, JennyB.:wave:
 
He appears to be fond of attacking the female members, JennyB.:wave:

Goodness, are you saying DrPhil is a misogynist? :hmm:

Anyway, he is a humongous PITA and a idiot to boot, IMO.

By the way, good posting, RonJaxon. Thanks for taking the time to educate people on this.
 
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