Lifetime HoH, now CI candidate - first post

Ruminator

Ruminator

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Greetings from Seattle. Let me see if I can introduce myself without getting too wordy...

I was born severely/profoundly hard-of-hearing (maternal rubella). I've worn a hearing-aid on my left since age 4, and was fortunately able to enjoy relatively decent hearing most of my life. Relying about 50% on sounds and 50% on lip-reading, I was able to communicate without too much difficulty -- no sign language, rarely used note-takers in class, and have even been able to use telephones except if person on other end was not an articulate speaker.

However, I experienced an abrupt and substantial decline in hearing about 2-1/2 months ago (dang, it seems so much longer than that). I've had several appts. consisting of hearing tests, attempts to get hearing to bounce back (including oral cortisone, then later two separate [and painful] cortisone injections right into the eardrum), and CI candidacy evaluation (which is a definite yes for me).

Obviously, I can no longer do a lot of the things I used to be able to do, and have also lost a certain level of independence. Am now relying on a transcriber in classes. Wife's voice on the phone, once clear and pleasant, now sounds like garbled monotone mumble that is 100% unintelligible. Music sounds ugly now. So, it's things like these that have got me seriously contemplating a CI. I may even go ahead and schedule surgery for early March 2008. However, the one thing that makes this decision so difficult is that I only have one legitimate candidate ear that has benefited from years of practice hearing and understanding speech. I've almost never used the bad right ear; thus, the part of my brain responsible for understanding speech via my right would probably never do much for me if I had that side implanted. The difficulty stems from the fact I still *do* have a little bit of hearing remaining in the left, albeit much softer and much more monotone. So, if the CI on the left for whatever reason turns out to be a flop, I'll then have nothing left at all with which to hear because I won't have the other ear to "fall back" on.

Tough, tough decision.

Anyway, I'm reading a lot of internet web sites like this one, evaluating potential CI benefits, weighing all the pros and cons, and asking my Dr. a lot of questions. But even now I have this feeling that, despite the risks, I will probably go ahead and give it a shot. I've even picked out the CI I would want to get if I get one -- Advanced Bionics Harmony HiRes Fidelity 120.

Mixed emotions persist...

- Steve
 
Welcome to the forums and I see you're yet another rubella child like me. I was born deaf due to rubella but my loss was greater than yours; I was born with a severe to profound deafness. I've worn a CI for nearly six months now. I should note here that success with a CI is not guarteed but it's worth the risk if your HA isn't working for you. Not everyone here will agree with me on this one but only you know if the CI route is the best way to go.
 
However, the one thing that makes this decision so difficult is that I only have one legitimate candidate ear that has benefited from years of practice hearing and understanding speech. I've almost never used the bad right ear; thus, the part of my brain responsible for understanding speech via my right would probably never do much for me if I had that side implanted. The difficulty stems from the fact I still *do* have a little bit of hearing remaining in the left, albeit much softer and much more monotone. So, if the CI on the left for whatever reason turns out to be a flop, I'll then have nothing left at all with which to hear because I won't have the other ear to "fall back" on.
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Hi Steve!

Welcome to AD and congratulations on your candidacy! I had my surgery done a little over two months ago and was activated on 9-17 with the Harmony device. I chose my worse ear to be implanted which is my left. I only used a hearing aid in that ear for a couple years when I was younger. It has been virtually left untouched for 15 years. I decided to get an implant because my hearing in my right ear has declined soo much, very similar to how yours is going. The right side of my brain which is responsible for my left ear supposedly has done a wonderful job of adapting. I thought that I was getting the wrong ear done because of the left/right brain theory but it doesn't seem that way. It seems that the brain rewires itself.

When I was going for my evaluation, the surgeon suggested my better ear to be implanted but I wanted to reserve that to fall back on in case it didn't work. I haven't heard too many cases of when a CI has not benefited someone but it is important to keep your expectations low. A CI is not a cure for hearing, it is the upgrade to hearing aid basically :)

I have a question though. Does this mean that your left ear is only suitable for implantation or is both ears suitable? You say that your right ear has "almost" never been used, does that mean it has in the past?
 
After numerous discussions here on the subject I came to conclusion that what really matters is how much hearing means to you, how much do you want to be able hear - "really really want to hear", "just want to hear" or "oh, whatever! hear"? - because there may be a lot of work involved with learning to hear with CI afterwards.

Your own motivation is very important. If you are serious about being able to hear, I think it's worth it.

Fuzzy
 
Hi, Steve.

I am new at this forum, like you, and I do wish you all the best of luck with your CI decision.

If I may, just wanted to ask you what kind of audiogram you have. I, too, am concidering obtaining a CI, but my ENT says I'm not a candidate yet. I was born HOH, moderate-to-severe, started wearing a HA on my left ear from the age of 7, and progressed to profound-to-total loss (90-115 dB on my left ear, 105-115 dB on the right one). My right ear remained untrained throughout the greater part of my life, but when I felt I could no longer cope with one HA, I started wearing another one on the right ear. That was a couple of years ago, and now it discriminates sounds much better than before, though the hearing threshold has actually deteriorated. So I think it's never too late to try and train, though you may require somewhat more time to get accustomed to your CI, if you opt for your "worse" ear.

Whatever decision you make, good luck! BTW, I live not very far from where you are - in Vancouver, Canada :)
 
Assynt said:
Hi, Steve.

I am new at this forum, like you, and I do wish you all the best of luck with your CI decision.

If I may, just wanted to ask you what kind of audiogram you have. I, too, am concidering obtaining a CI, but my ENT says I'm not a candidate yet. I was born HOH, moderate-to-severe, started wearing a HA on my left ear from the age of 7, and progressed to profound-to-total loss (90-115 dB on my left ear, 105-115 dB on the right one). My right ear remained untrained throughout the greater part of my life, but when I felt I could no longer cope with one HA, I started wearing another one on the right ear. That was a couple of years ago, and now it discriminates sounds much better than before, though the hearing threshold has actually deteriorated. So I think it's never too late to try and train, though you may require somewhat more time to get accustomed to your CI, if you opt for your "worse" ear.

Whatever decision you make, good luck! BTW, I live not very far from where you are - in Vancouver, Canada :)
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I'm surprised you are not considered to be a candidate with the significant hearing losses you mention. Perhaps you do really well with the hearing aids on the sentence testing? Are you getting more than 60% of words without any visual cues such as lipreading?
 
Ruminator,

I had a discussion with my surgeon about implanting ears that haven't been as well stimulated as the dominant ear. He is a very well thought of surgeon here in Australia and his opinion was that if the auditory system has been stimulated well with the dominant ear, it will not make any difference if you have the less dominant ear implanted.

I asked him this question because the second ear I had implanted did not have a hearing aid in it until I was 10 and it didn't do very well with the hearing aid. I told him that I was not expecting the results to be as good as my first ear. He said that as long as the hearing nerve was workable that you should get similar results, since we only have one auditory processing system. I do realise that the jury is a bit out on this but something for you to think about.

I am very pleased with the results in my less stimulated ear, if anything the progress has actually been faster for some reason. My first ear which used to be my best ear with hearing aids struggled to keep up.
 
Thanks. It does sound like a CI could potentially be considerably better than how I am hearing with a HA these days.
 
R2D2 said:
Ruminator,

I had a discussion with my surgeon about implanting ears that haven't been as well stimulated as the dominant ear. He is a very well thought of surgeon here in Australia and his opinion was that if the auditory system has been stimulated well with the dominant ear, it will not make any difference if you have the less dominant ear implanted.

I asked him this question because the second ear I had implanted did not have a hearing aid in it until I was 10 and it didn't do very well with the hearing aid. I told him that I was not expecting the results to be as good as my first ear. He said that as long as the hearing nerve was workable that you should get similar results, since we only have one auditory processing system. I do realise that the jury is a bit out on this but something for you to think about.

I am very pleased with the results in my less stimulated ear, if anything the progress has actually been faster for some reason. My first ear which used to be my best ear with hearing aids struggled to keep up.
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Wow. This really gives me a lot to think about. I'll be addressing this with my surgeon in the letter I'm sending to him soon, because they had suggested that I have my better, exercised, practiced ear implanted.
 
Good luck with your decision. I went into the CI surgery with a severe loss. I was able to repeat around 69% of the sentences but had a audiologist and surgeon who listened and got approval based on the noise test. Thankfully my insurance approved and I'm really enjoying my hearing now. :)

The decision is individual and the results are as varied as the people. But most of us who have a good auditory memory seem to adapt quite well and fairly quickly.

And if you really want to hear and are like I was, at the point of frustration....what do you have to lose? (that was just my way of deciding, if it wasn't good what difference would it have made if one ear became completely deaf? if the question would be should I wait for better technology, to that I answered myself....why would I want to wait when I'm having problems now? ) Life is short no need to be more frustrated then necessary.

Good luck I hope you have an easy journey into the CI world if that's what you want.
 
contradica said:
I have a question though. Does this mean that your left ear is only suitable for implantation or is both ears suitable? You say that your right ear has "almost" never been used, does that mean it has in the past?
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Thanks for the welcome!

Both ears are physically suitable. But according to surgeon and audiologists, the right isn't really "suitable" because of "lack of use." (They like to use the unexercised muscle that atrophies as an analogy, which I'm sure you've heard before.)

I used the poorer right ear for a few years as a kid, then after that, have never used it since. (I'm now 42.)

Since the dominant left ear's recent decline, I decided to have a mold made for the poorer right ear so that I could experiment and see how well I do with using two bad ears as opposed to just one ('cause I happened to have a spare HA). I know I may not have given it enough time, but it didn't seem particularly helpful.

My wife and I also conducted a test. We picked three sentences of similar length that she's been known to say from time to time. We tested each ear independently in which she picked a sentence at random to see if I could identify (no lip-reading) which of the three she said. This was done twice per ear. Testing the dominant left, I only got one of the two correct, and that was partly luck because I actually had to guess a bit. (Prior to the decline, I would have identified both sentences easily.) When we tested the poorer right, each time she spoke one of the sentences, even though I could hear sound, it was so totally garbled that I was like "Oh, FORGET it!" I could not even begin to guess which sentence she said.

I am kind of excited about the prospects of a CI, but it's so hard to decide which side to have implanted.
 
Ruminator said:
When we tested the poorer right, each time she spoke one of the sentences, even though I could hear sound, it was so totally garbled that I was like "Oh, FORGET it!" I could not even begin to guess which sentence she said.
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R2D2 surgeon makes perfect sense. One brain, two sides, one auditory processing system, makes sense :) What you just described is what I heard with my left ear with a hearing aid. It sounded garbled, awful, nothing made sense, it was garbage, not sound. My speech discrimination with hearing aids on my left ear was 0% and now it is at 44% with the CI in only 6 weeks. If you can still pick up sounds but not speech, then most likely your auditory nerve did not atrophy, its still alive boss :)
 
Ruminator said:
...
Tough, tough decision.

Anyway, I'm reading a lot of internet web sites like this one, evaluating potential CI benefits, weighing all the pros and cons, and asking my Dr. a lot of questions. But even now I have this feeling that, despite the risks, I will probably go ahead and give it a shot. I've even picked out the CI I would want to get if I get one -- Advanced Bionics Harmony HiRes Fidelity 120.

Mixed emotions persist...

- Steve
Click to expand...

Welcome aboard! Best success in your endeavors!

Take your time and check the various threads out there on CIs. Lots of opinions about CIs...some good some bad. Personally, I became a 'borg in March 2005 and I haven't looked back since. Best thing I ever done. Do your homework and decide how important hearing is to you. That should simplify the whole kabootle :D
 
R2D2 said:
Ruminator,

I had a discussion with my surgeon about implanting ears that haven't been as well stimulated as the dominant ear. He is a very well thought of surgeon here in Australia and his opinion was that if the auditory system has been stimulated well with the dominant ear, it will not make any difference if you have the less dominant ear implanted.

I asked him this question because the second ear I had implanted did not have a hearing aid in it until I was 10 and it didn't do very well with the hearing aid. I told him that I was not expecting the results to be as good as my first ear. He said that as long as the hearing nerve was workable that you should get similar results, since we only have one auditory processing system. I do realise that the jury is a bit out on this but something for you to think about.

I am very pleased with the results in my less stimulated ear, if anything the progress has actually been faster for some reason. My first ear which used to be my best ear with hearing aids struggled to keep up.
Click to expand...


Hmm.. I guess there's hope for my right ear. My right ear has received a bit more stimulation than your worse ear did; I've not had much stimulation in that ear since I was 14 because sounds were so garbled that they did not make much sense to me.
 
The difficulty stems from the fact I still *do* have a little bit of hearing remaining in the left, albeit much softer and much more monotone
Click to expand...
Wow.....tough decision. Do you know what your word/sentance percentage is with your HA? That might help swing the decision.
 
deafdyke said:
Wow.....tough decision. Do you know what your word/sentance percentage is with your HA? That might help swing the decision.
Click to expand...

Good ear used to have nearly 50% comprehension. Now its 4%. I know, this would seem to make getting a CI a no-brainer, and for the most part, it is. The loss is still a pretty recent event for me, and I'm going about this cautiously, educating myself as much as I can. As everyone else says, no need to rush. March 2008 is looking likely at this point, tho, and I am going to have to talk to my doctor soon to reserve that time frame.
 
Wow...........in that case I totally would go for it! 4% is VERY low comprehension.
 
Hi, Steve:

I'm glad you get good advice and support at AD. I know CI is a tough decision. This year my hearing is worse too. I understand about "garbled" - just low sound and no real words with speech with HA and nothing really without HA. Even with lipreading, HA, and clear slow speech recently I can't understand conversation. Now I try to decide about CI without family pressure. Probably I am stupid about this but I need to decide about CI without family opinion. (Everyone in the world has opinion about CI I think :roll:) I'm glad your wife helps you. Good luck with the decision. :)
 
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