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Unread 11-10-2010, 02:33 PM   #1 (permalink)
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Problems with cochlear implant

Hi
I had my cochlear implant fitted 7 weeks ago and was activated last week. It is an Advanced Bionics implant.

Since the op, I have had constant tinnitus in my implanted ear. Also, I have experienced occasions when the tinnitus gets so loud it becomes unbearable, before it gradually goes back to the "normal" level after a minute or two. This loud tinnitus always occurs if I get out of my chair or bend over, even if I do so really slowly.

My second problem is with the activation. I know it is early days but I am just hearing whistling tones when there is noise or speech, and these tones sound very similar to feedback on a hearing aid. It is really tiring although I know I have to keep at it and wear the processor as much as I can, and with time hopefully things will get better. I also notice a constant ringing tone when I switch the processor on which stops when I turn the processor off.
Does anyone else here share these experiences?
Regards
Dan
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Unread 11-10-2010, 02:38 PM   #2 (permalink)
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Quote:
Originally Posted by danscu View Post
Hi
I had my cochlear implant fitted 7 weeks ago and was activated last week. It is an Advanced Bionics implant.

Since the op, I have had constant tinnitus in my implanted ear. Also, I have experienced occasions when the tinnitus gets so loud it becomes unbearable, before it gradually goes back to the "normal" level after a minute or two. This loud tinnitus always occurs if I get out of my chair or bend over, even if I do so really slowly.

My second problem is with the activation. I know it is early days but I am just hearing whistling tones when there is noise or speech, and these tones sound very similar to feedback on a hearing aid. It is really tiring although I know I have to keep at it and wear the processor as much as I can, and with time hopefully things will get better. I also notice a constant ringing tone when I switch the processor on which stops when I turn the processor off.
Does anyone else here share these experiences?
Regards
Dan
when I was activated, i could only hear beep, dings, and white noise... I guess the ding is like the whistling you hear. Give it some time, it get better. It definitely get better after several mappings.
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Unread 11-11-2010, 12:12 AM   #3 (permalink)
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Hi Dan: I recall from my operation in July/07 having strange sounds-like water falling-when I woke from the operation-- that lasted about 3 hours. None since.
Lots of strange sounds-street cars with dance music. Mapping took care of that problem. I recall thinking someone was following me- only my foot steps which I hadn't heard before! I keep it on all the time-except when swimming.
Just takes lots of time to get used to all the sounds- you DIDN'T hear before.Have patience with yourself-Dan.
Like you I have an Advanced Bionics-Harmony model. Just crossed over the 3 year anniversary-recently.
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Unread 11-11-2010, 03:21 AM   #4 (permalink)
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Patience.... when i was first switched on it was all white noise at high pitch it was like that for about a month. Yes it's tiring and emotional but preservace paid off by keeping wearing it, listening hard, ask a person what's the sound to help you to teach your brain what the sound is, If you find the sounds uncomfortable, turn it down and granually increase it through the day/week. Note down your new sounds that you could identify and isn't uncomfortable, sounds that made you uncomfortable and tell your Audiologist so s/he have the idea what you are hearing. At first, paper crinkling was the highest pitched sound ever heard that made my eyes squint so was the water running, the audi turned down the highs a little so it was more comfortable until i got used to it.

I had suffered with tinnitus all of my life and with CI it had been much better as it over powers the sound of tinnitus but it's still there when i take the CI off, although not as loud as pre implant and it usually settles quite quickly.

I am now 2 years/4months post implant and since about 18 month mark it had been great, I had began hearing well. That's from me, who was born profoundly deaf, aided until implanted at 30. Each person is different, their hearing history is different so the outcome is different.
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Unread 11-11-2010, 01:13 PM   #5 (permalink)
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Hey there Dan,

I am 4 months into my activation with my implant, It was pretty wild at the begining. At first I had trouble with men's voices but could easily hear womens, it took me about 2 weeks to get pretty comfortable with hearing via CI. The sound during the early days of water were the worst for me it did not sound anything like water for me. Pre implant I had tinnitus 24/7 for 10 long years The night of surgery it was unbearable but did calm down to a very small hum. Now it's pretty much non existent unless i am very physically active then it will get somewhat loud but will settle back to nearly nothing within a few mins. Now 4 months into implant I can hear better than I have ever heard in my entire life ( I am late deafend). I have gotten to the point to finally take the steps to do my life long dream to play the guitar now that I am able to hear everything within music. I no longer require the use of closed captioning on the television. I wish you the best in your journey the more you use it the more it will be benefical to you. The brain is a powerfull organ!!
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Unread 11-11-2010, 01:36 PM   #6 (permalink)
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I haven't wore my CI for weeks, and when I got it fix, all that dinging and bells came back to me... it always sound like that if you don't wear your implant for awhile. Not sure why it does that though.
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Unread 11-11-2010, 02:15 PM   #7 (permalink)
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Originally Posted by danscu View Post
Hi
I had my cochlear implant fitted 7 weeks ago and was activated last week. It is an Advanced Bionics implant.

Since the op, I have had constant tinnitus in my implanted ear. Also, I have experienced occasions when the tinnitus gets so loud it becomes unbearable, before it gradually goes back to the "normal" level after a minute or two. This loud tinnitus always occurs if I get out of my chair or bend over, even if I do so really slowly.

My second problem is with the activation. I know it is early days but I am just hearing whistling tones when there is noise or speech, and these tones sound very similar to feedback on a hearing aid. It is really tiring although I know I have to keep at it and wear the processor as much as I can, and with time hopefully things will get better. I also notice a constant ringing tone when I switch the processor on which stops when I turn the processor off.
Does anyone else here share these experiences?
Regards
Dan
Some experienced tinnitus after surgery and it's normal.

Tinnitus happens to a lot of people after activation. It's normal. It takes a while to get used to it. CI is "tinny" - always do but over time, your brain gets to filter out the tinny part well. The tinny is actually a result of "conditioning" - it's constantly putting pure noise to help "condition" the hair cells for incoming signals. It is used to improve speech comprehension. And you will likely hear the tinnitus after you turn off CI for a while.
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Unread 11-11-2010, 06:55 PM   #8 (permalink)
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Yep, everyone said the right thing, it takes time.

Your brain is processing all these new sounds, and needs to "map" itself. The older you are, the longer it takes.

The first 3-4 weeks are going to sound awful and weird. 2-3 months later, it starts to sound normal. I went in for a 'tune-up' every week for 4 weeks, then 2x a month after that for 4 months. Now I go once a year.

As for the tinnitus, some is normal while the cochlea repairs itself, but if it continues for another 2-3 months, talk to your surgeon.

People have different reactions to the new CI.

With mine, I had a very sensitive spot behind my ear that if I pushed it, I got very dizzy. Took a year to heal completely. Also, some of my facial nerves got re-connected in a weird way: If I scratched one part of my head, I could feel the scratching on another area, even though I wasn't touching it, and part of my tongue had a bitter taste every time I scratched a certain part of my head.
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Unread 11-12-2010, 02:55 AM   #9 (permalink)
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.
Also, some of my facial nerves got re-connected in a weird way: If I scratched one part of my head, I could feel the scratching on another area, even though I wasn't touching it.
Thank god, I am not the only one!!

Last edited by naisho; 12-03-2011 at 12:26 PM. Reason: broken quote fix
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Unread 11-12-2010, 11:22 AM   #10 (permalink)
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I am lucky my facial nerves were never affected.. but my taste nerve was out of whack for about 15 days or so. I couldnt taste much of anything .
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Unread 11-12-2010, 12:11 PM   #11 (permalink)
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I've been talking with CI users in the past couple weeks and discovered that there ARE problems the CI poster-folk in here do not mention. I wonder if it is because they tend to be more open and honest when talking with a fellow deafie? It is so weird.
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Unread 11-12-2010, 07:35 PM   #12 (permalink)
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I've been talking with CI users in the past couple weeks and discovered that there ARE problems the CI poster-folk in here do not mention. I wonder if it is because they tend to be more open and honest when talking with a fellow deafie? It is so weird.
I think its because the CI is a huge investment and they don't want to mention problems...
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Unread 11-12-2010, 11:10 PM   #13 (permalink)
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PFH is correct about the total cost of a Cochlear Implantation. The total cost for me -surgeon fees/hospital care/audiologist fees/implant itself-3 years ago was $55,000.00 CDN covered by Ontario Health Insurance. I met their criteria-to be fully covered. The Implant section-Sunnybrook/Toronto has to choose who are suitable. The rejection rate is 60% of those considered over the last 18 years.
So far, no problems with taste, tinnitus or facial nerve problems

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Unread 11-13-2010, 06:43 AM   #14 (permalink)
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Nothing is usually 100% problem-free. Besides I think the pros of CI's certainly outweighs the cons.
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Unread 11-13-2010, 06:44 AM   #15 (permalink)
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I've been talking with CI users in the past couple weeks and discovered that there ARE problems the CI poster-folk in here do not mention. I wonder if it is because they tend to be more open and honest when talking with a fellow deafie? It is so weird.
We talk about problems with CIs all the time in other forums, blogs, facebook. Equipment issues (breaking, adjusting, settings, batteries), accommodation issues (FM systems, accessories for other technology), where they can/can't be used, some people have trouble keeping them on in rough and tumble physical sports, some people get irritation at the magnet contact point if they set their magnet too strong, teachers don't know what they are, strangers think they are bluetooths, etc.

I've seen several CI users discuss their experiences, the apprehensions, the scary surgery, the discomfort after, the activation and excitement/ disappointment of first sounds, getting to know the equipment. I suspect you are just thinking there are a lot more problems than you are reading about, and there may not be. Perhaps you'd read more if the moment CI is mentioned, a truckload of people without any familiarity with CIs didn't join the conversation and begin the anti-CI debate.
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Unread 11-13-2010, 07:13 AM   #16 (permalink)
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Or people do not post here because other people think they are writing not so positive experience when they aren't.

Here you gotta be a cheerleader rooting for CI . I am not going to do that and be your CI cheerleader
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Unread 11-13-2010, 08:12 AM   #17 (permalink)
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Or people do not post here because other people think they are writing not so positive experience when they aren't.

Here you gotta be a cheerleader rooting for CI . I am not going to do that and be your CI cheerleader
Thats what I was meaning when I started the CI Support Group thread....
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Unread 11-13-2010, 08:13 AM   #18 (permalink)
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We talk about problems with CIs all the time in other forums, blogs, facebook. Equipment issues (breaking, adjusting, settings, batteries), accommodation issues (FM systems, accessories for other technology), where they can/can't be used, some people have trouble keeping them on in rough and tumble physical sports, some people get irritation at the magnet contact point if they set their magnet too strong, teachers don't know what they are, strangers think they are bluetooths, etc.

I've seen several CI users discuss their experiences, the apprehensions, the scary surgery, the discomfort after, the activation and excitement/ disappointment of first sounds, getting to know the equipment. I suspect you are just thinking there are a lot more problems than you are reading about, and there may not be. Perhaps you'd read more if the moment CI is mentioned, a truckload of people without any familiarity with CIs didn't join the conversation and begin the anti-CI debate.
But you hear almost none of them discussing explants.
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Unread 11-13-2010, 08:15 AM   #19 (permalink)
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I think its because the CI is a huge investment and they don't want to mention problems...
yeah my hubby's balance got worsen after he got a CI.
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Unread 11-13-2010, 08:35 AM   #20 (permalink)
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Hi danscu. Sounds like starting problems from what my friends have told me, and hope it works out for you in the end. Good luck!
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Unread 11-13-2010, 01:30 PM   #21 (permalink)
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AS Flip would say in a different thread-entirely up to you how one deals with the fact of deafness.Your choice!

Implanted Advanced Bionics- Harmony activated Aug/07
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Unread 11-13-2010, 01:45 PM   #22 (permalink)
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But you hear almost none of them discussing explants.
Exactly. And in all the literature I have been given to read (and two CD's to watch), nowhere are Cons mentioned. That to me is lying. Why do they lie? I was seriously thinking of getting an implant (for professional reasons), but now I just dunno. There is something wrong with the whole picture and I find it disgusting. The only people in here who are purely and unabashedly pro-CI are HEARING. Oh come on.
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Unread 11-13-2010, 02:04 PM   #23 (permalink)
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The only people in here who are purely and unabashedly pro-CI are HEARING. Oh come on.
Not all pro-CI's are hearing; many deaf are.

The CI is most successful in people that lost their hearing later in life.

Hearing people WANT to believe that the CI is the best thing out there.

I believe the reason we don't hear much about the bad side of CI's is that people focus on the successes much more than the failures.

When a new prescription medicine comes out, and it is touted as a miracle, all you are going to hear are good things. The people who have had bad experiences will not be heard, and will be swept under the rug as "minor problems". This mentality applies to CI's.

Same thing happens to hearing aid users....how often do we hear people complaining about HA's making their life miserable? Not very often, but it happens.

The CI should have been marketed as an advanced hearing aid, not as a 'cure' that many people want to believe.

I know one woman who had a CI and suffered seizures & other maladies for two years before having it explanted, her symptoms went away. She was written off as a fluke.
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Unread 11-13-2010, 02:20 PM   #24 (permalink)
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Not all pro-CI's are hearing; many deaf are.

The CI is most successful in people that lost their hearing later in life.

Hearing people WANT to believe that the CI is the best thing out there.

I believe the reason we don't hear much about the bad side of CI's is that people focus on the successes much more than the failures.

When a new prescription medicine comes out, and it is touted as a miracle, all you are going to hear are good things. The people who have had bad experiences will not be heard, and will be swept under the rug as "minor problems". This mentality applies to CI's.

Same thing happens to hearing aid users....how often do we hear people complaining about HA's making their life miserable? Not very often, but it happens.

The CI should have been marketed as an advanced hearing aid, not as a 'cure' that many people want to believe.

I know one woman who had a CI and suffered seizures & other maladies for two years before having it explanted, her symptoms went away. She was written off as a fluke.
I cannot quite put my finger on the why, but I agree with the bolded, even though many people here insist it works best with toddlers. I feel I am at the point where I will no longer research negative effects of CI's; rather, I will personally talk with the CI users who fit my age and personality type and find out how they succeeded. I talked with a couple CI users who bemoaned their feelings of vertigo after receiving their implants, but I suspect it was pre-existing conditions: they were finicky types of guys so I will practically disregard their experiences. I look at the people who have the CI's. Tomorrow I will meet a successful deaf stockbroker from Chicago: I talked with him on VP and he was implanted four years ago. He is sharp as a tack and made it clear it was his determination to succeed that let him overcome the obstacles. I will find out exactly what obstacles they were. I am not poo-pooing CI's. I just think one needs the right stuff to make it work.
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Unread 11-13-2010, 02:39 PM   #25 (permalink)
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with hearing people, they are more likely are just happy they can hear really good with their Ci, better than nothing for them as they have always taken their hearing for granted. But I think if I asked them if they would pick a stem cells cure or Ci - both works, and both have their own issue, they are far more likely to choose stem cells over CI anyday, in my opinion. I would doubt they would say "it doesn't make a difference" if stem cells is more natural to hearing.

I will tell you this, anyone who tell you they don't have any obacles with their Ci would be lying. But they can still see the glass half full about it if they want to. Even many pro-ci will talk about the things they have to deal with that they don't like.
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Unread 11-13-2010, 11:44 PM   #26 (permalink)
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Quote:
Originally Posted by green427 View Post
Not all pro-CI's are hearing; many deaf are.

The CI is most successful in people that lost their hearing later in life.

Hearing people WANT to believe that the CI is the best thing out there.

I believe the reason we don't hear much about the bad side of CI's is that people focus on the successes much more than the failures.

When a new prescription medicine comes out, and it is touted as a miracle, all you are going to hear are good things. The people who have had bad experiences will not be heard, and will be swept under the rug as "minor problems". This mentality applies to CI's.

Same thing happens to hearing aid users....how often do we hear people complaining about HA's making their life miserable? Not very often, but it happens.

The CI should have been marketed as an advanced hearing aid, not as a 'cure' that many people want to believe.

I know one woman who had a CI and suffered seizures & other maladies for two years before having it explanted, her symptoms went away. She was written off as a fluke.
advanced hearing aid...that makes more sense.
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Unread 11-14-2010, 08:38 AM   #27 (permalink)
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Clearly a Cochlear Implant will NOT be beneficial to everyone. This was explained to me almost 4 years ago when I started to process at Sunnybrook/cochlear section. I knew that from the various articles I had already. This fact is true of all operations-fortunately in small numbers. Yeah if one is "unsuitable" for an Implant- the consequence will to remain deaf. A footnote to my experience- I met a person who had to wait almost a year for the operation due to ongoing heart troubles. When actually performed almost died on the operating table but survived because there was a heart doctor at the same time and saved him. Yeah no exactly a "minor operation"!
A Cochlear Implant is NOT an advanced hearing aid but an entirely different electronic device which operates in a very different manner.

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Unread 11-14-2010, 08:58 AM   #28 (permalink)
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A Cochlear Implant is NOT an advanced hearing aid but an entirely different electronic device which operates in a very different manner.

A CI is NOT an advanced hearing aid? Oh, no, what have I gotten myself into??? Get that thing outta my head!!!!!


If it is not classified as a hearing aid, then what the **** is it?
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Unread 11-14-2010, 09:11 AM   #29 (permalink)
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It aids your hearing doesn't it?

People just call it CI.
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Unread 11-14-2010, 09:12 AM   #30 (permalink)
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Clearly a Cochlear Implant will NOT be beneficial to everyone. This was explained to me almost 4 years ago when I started to process at Sunnybrook/cochlear section. I knew that from the various articles I had already. This fact is true of all operations-fortunately in small numbers. Yeah if one is "unsuitable" for an Implant- the consequence will to remain deaf. A footnote to my experience- I met a person who had to wait almost a year for the operation due to ongoing heart troubles. When actually performed almost died on the operating table but survived because there was a heart doctor at the same time and saved him. Yeah no exactly a "minor operation"!
A Cochlear Implant is NOT an advanced hearing aid but an entirely different electronic device which operates in a very different manner.

Implanted Advanced Bionics-Harmony activated Aug/07
It aids hearing, doesnt it?
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