A new take on CI's - Adult perspectives

I've noticed a trend in almost every single thread that discusses CI's. Inevitably, the discussion turns into a debate about whether or not children should be implanted. While I agree we all have our own opinions and those opinions are influenced by our upbringing (deaf/hearing) and our education, I would like to see a thread here about CI's in adults. Specifically, adults who can share their experiences, give advice to others who might be considering CI's etc without it turning into the name-calling, finger pointing and brou-ha-ha that it always seems to with regards to children and CI's - there are enough threads already available if you want to debate that subject.

I'd like to see an area (or at least a thread) where we adults who have CI's can freely discuss amongst ourselves our experiences, (be they good or bad!,) events in our lives that have impacted us, surgery and post surgery, experiences with activation, mapping, using different equipment, etc.

Being that I've seen this forum has hundreds of visitors, I'm sure that this kind of discussion will be welcome by many. Even educational to some.

Myself - I'm 34. I went deaf from meningitis and last year was implanted with the Freedom. My experience has been nothing short of mind-blowing. Even my greatest expectations (which I tried to suppress, so not to be disappointed if things didn't work out as well as I'd hoped) have been surpassed. I never dreamed I'd be doing things, and hearing things as I am now, just ONE year later!

So...is it wishful thinking on my part that we could intelligently discuss CI's in adults here, and in turn share our experiences, our frustrations, our achievements, CI moments etc?

I think it would be a nice change of pace from the constant bickering

Thanks for starting this Neecy!

Me I'm 35, was born severely/profoundly deaf due to Waardenburg syndrome. I did very well with hearing aids until last year when I had a sudden loss that zapped my residual hearing in my better ear. Since then I've had 24 hour tinnitus that sounds like a 747 jet and recruitment. I also feel exhausted most days in contrast to before I had my loss. I think my brain is wired to receive sound and it's straining itself a lot of the time! I am also mum to a hearing toddler as well.

I've gone through the assessment for a CI and was approved 6 weeks ago. I am currently waiting for a surgery date - I won't know until 2 weeks before the actual surgery. I will be implanted with a cochlear freedom (no other choice in Australia!). I am nervous but excited too. I've been told that in most cases the tinnitus from sudden loss either really improves or goes completely with CIs.

Anyone else lurking who has a CI or is going for one?

R2D2

R2D2 Congratulations on getting approved for implantation! I remember how excited I was when I received the news! My surgery went off without a hitch, and after the 2 hours post-surgery observation, I was able to go to the hotel room I was sharing with my Mom and spent the rest of the day sleeping. Woke up that night feeling just fine, and went home the following day. My healing was fantastic, I had NO pain whatsoever, a little bit of the dizzies fora couple days (which is normal) and I couldn't have been happier. I suffered no bad side effects, and the only side effect that I had was an inflamed lymph node on my neck (same side as implant) that was checked out but went away on its own and caused no problems.

I'm looking forward to hearing more about your experience especially when you get activated!!!!!

I agree with Neecy about CI threads generally degenerating into that heated debate...just not necessary.

Hi R2D2...good to see you still around

I'm getting to be a known commodity around but...here it goes.

I was born HOH and had a HA put on when I was four. Had one ear basically deaf and the other 60% for many years until my 30's. It started to slowly deteriorate and got to the point that I was considered legally deaf even though my HA was still working (abeit at a barely making it level). Since, I'm very intregrated into the hearing world, I decided to make the jump to a CI in March of '05. It has been a year now and I just can't believe how well it turned out for me. No regrets...I use the phone, conference calls, hear speech around corners and in the dark...just so many things that I could only dream of with my HA.

It would be really fantastic if I could use the phone with the CI. With hearing aids I could only use the phone with with people I knew very well and even then there were a lot of requests for them to repeat things.

My husband and I have just set up an accounting business as we are both trained accountants ( :roll: ) primarily as a way of getting around the discrimination that I experienced from not being able to use the phone in the workplace before I had my daughter. So being able to use the phone more easily with a CI would be a bonus. Anyway I'll see what happens as I want to stay realistic and keep my feet on the ground. I know that if I don't feel so tired anymore and the tinnitus decreases I will be really happy.

Thanks for the encouragement you both.

R2D2

I would like to know if any adult CI recipients here know SL? How did their Deaf peers react to them having the CI implant? Etc.

Eyeth,

I am very ASL-fluent and have had leadership positions in several Deaf (big D) organizations. I have found, and not to my surprise, that many Deaf people have been supportive of my decision even if they disagree with it.

I intimately and profoundly respect each and every one of those outstanding people--we have all worked together to further the progress of our community and the declaration of our culture.

Yes, it's perfectly possible to be big-D deaf (I am enormously proud of my heritage and culture as a Deaf person) and still have an implant, regardless of what some may think.

Endymion-

Thanks for your illuminating reply.

Endymion said:

I am very ASL-fluent and have had leadership positions in several Deaf (big D) organizations. I have found, and not to my surprise, that many Deaf people have been supportive of my decision even if they disagree with it.

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I don't know if I've caught this before; Did you go to a Deaf residential school? If so, how did your old classmates react?

I remember attending the FAD convention last summer (2005) and actually meeting a couple of old friends from my FSD days, now sporting implants. While I consider myself 'supportive', admittedly it is still jarring to me, finding out my old friends now opting for the CI. I hope no one actually filmed me at the FAD convention when I bumped into these old friends! My facial expression(s) would have given me away! :Ohno:

Don't take this the wrong way; I grew up at FSD during its heyday, almost 1,000 Deaf/HH students (think Rubella..) and nary a single person having a CI in sight! Of course, it was too easy an target to bash and ridicule. Looking back, like so many peers of my time, I was misinformed about the emerging CI technology in some ways. The fact that the early results of the CI regimen were poor, also helped fuel our disdain for the CI technology. Really, those heady times were the apex of the ASL-using Deaf Culture.

Now, these same people, admittedly in small numbers, are opting for the CI. Quite a 180 degree change, indeed, in 20 years! It has been somewhat an adjustment for me. I undertook a little bit of research and found out my misconceptions and misunderstandings were unwarranted, and were seriously out of date. Still, after meeting those old friends and getting over the initial shock, we continued to converse in ASL, and it felt like the 1980's all over again, with warm and fuzzy feelings! I forgot all about the CI being in the picture, and perhaps that best says it all about my acceptance of old friends having them!

Eyeth-

I think your comments about your friends are a good indication that CIs aren't going to wipe out Deaf culture. Several friends of mine have implants, or have recently opted for them , yet they still sign and are affiliated with Deaf culture. It's a nice thing to see.

Yes, back when hearing aids first became popular, the Deaf conscienous was that aids were gonna wipe out Deaf culture. Yet they have become a PART of Deaf culture! So will CIs.....If audilogically hoh folks can ID as Deaf and take part in Deaf Culture, then there is NO reason whatsoever that CIs will be the Hitler of Deaf culture. Sure there may be some folks who totally buy into that auditory-verbal thinking......but it's been proven by research that most oral kids do eventually learn sign..... I mean I rememeber hearing that it's not that unusual a sight to see 'terps (and not oral 'terps or Cued Speech 'terps) at AG Bell conferences.....and even a small albliet significent percentage of auditory-verbaled kids learn ASL as a second language.

Eyeth said:

I would like to know if any adult CI recipients here know SL? How did their Deaf peers react to them having the CI implant? Etc.

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I know ASL, though not as well as I used to, I freely admit. I pretty much stopped using sign after I left RIT/NTID and mostly because all of my family members are hearing, and once I came back home, most of my friends are hearing as well. The deaf friends I do have whom know of my implant are very happy for me, as they all knew this was a desire I had. I've experienced ZERO negative reactions. Its been wonderful!

Eyeth said:

Endymion-

Thanks for your illuminating reply.I don't know if I've caught this before; Did you go to a Deaf residential school? If so, how did your old classmates react?

I remember attending the FAD convention last summer (2005) and actually meeting a couple of old friends from my FSD days, now sporting implants. While I consider myself 'supportive', admittedly it is still jarring to me, finding out my old friends now opting for the CI. I hope no one actually filmed me at the FAD convention when I bumped into these old friends! My facial expression(s) would have given me away! :Ohno:

Don't take this the wrong way; I grew up at FSD during its heyday, almost 1,000 Deaf/HH students (think Rubella..) and nary a single person having a CI in sight! Of course, it was too easy an target to bash and ridicule. Looking back, like so many peers of my time, I was misinformed about the emerging CI technology in some ways. The fact that the early results of the CI regimen were poor, also helped fuel our disdain for the CI technology. Really, those heady times were the apex of the ASL-using Deaf Culture.

Now, these same people, admittedly in small numbers, are opting for the CI. Quite a 180 degree change, indeed, in 20 years! It has been somewhat an adjustment for me. I undertook a little bit of research and found out my misconceptions and misunderstandings were unwarranted, and were seriously out of date. Still, after meeting those old friends and getting over the initial shock, we continued to converse in ASL, and it felt like the 1980's all over again, with warm and fuzzy feelings! I forgot all about the CI being in the picture, and perhaps that best says it all about my acceptance of old friends having them!

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Your posts make me smile, you know that? I am a fan of your style and the compassion and understanding you show. Plus, you've got humor, and nothing beats that!

Did you know that when I first heard about implants, I thought they were biological apparati removed from cows! Funny that. I'd be hearing with a moo moo here and a moo moo there. E I E I O!

No, I never did attend a residential school. There was a time when I was rather adamant about it, but my parents refused to budge. Did they make a good decision? I don't know, though I think there is a chance I turned out all right. A remote one, admittedly.

You hear lots about a paltry quality of education at residential schools (CSD-Fremont and CSD-Riverside miserably bombed the California STAR tests a few years back, with more than half of the students failing to pass the bottom 75th percentile in many categories--and CSDF is supposed to be one of the premier deaf schools), but I am increasingly convinced that quality of education means little without social autonomy and esteem, two things at which any residential school for the deaf excels (at least by stereotype). We all know of introverted educated types who are miserable whether deaf or hearing. I state the obvious: we need more improvement in the school environment.

If you want the California STAR results, let me know and I'll see if I can dig them up again.

Back to CIs. I unfortunately feel that the Deaf world's days are numbered, and so soon after its official recognition! The threat isn't the CI, but rather, the progressing technology that may lead to complete restoration of hearing at birth without bulky, visible artificial devices. When we create a ruckus about the implant genocide, what we're really doing is we're establishing a dichotomy between "ASL" and "Hearing" and and through that, we're setting ourselves up for cultural demise. For our culture to preserve, we must integrate it with the needs and nature of greater society, and we cannot afford to make the two mutually exclusive.

Or, that's my two cents on it, complete with a copper Lincoln bust.

Endymion said:

Back to CIs. I unfortunately feel that the Deaf world's days are numbered, and so soon after its official recognition! The threat isn't the CI, but rather, the progressing technology that may lead to complete restoration of hearing at birth without bulky, visible artificial devices. When we create a ruckus about the implant genocide, what we're really doing is we're establishing a dichotomy between "ASL" and "Hearing" and and through that, we're setting ourselves up for cultural demise. For our culture to preserve, we must integrate it with the needs and nature of greater society, and we cannot afford to make the two mutually exclusive.

Or, that's my two cents on it, complete with a copper Lincoln bust.

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Interesting observation - and true enough with the advent of fully implantable devices, nerve regrowth and even stem cell possibilities, I think that in many cases that may be true, but there are still many forms of deafness that even medicine won't be able to cure. Children born without cochlea's come to mind. Or those with cochlear occification (although direct nerve induction is showing promise its not yet reached the success of CI's.) There will be those who are DODA and therefore prefer to retain their deafness...so I don't think we will ever see deaf "dying out" but I do think that it will become more homogeneous with regards to empathy and acceptance of *ALL* aspects of deafness, be it mechanically aided (HA/CI, etc), biologically fixed (stem cell regrowth) or whatever science may throw at us in the future.

glad you made this thread

myself i'm 26.. become Deaf from menigits. got CI last year with freedom.

I'm fluent-ASL and hangs with Deaf world and hearing world.

only thing i'm disappointed about having CI is that i can't wear it when i'm going ATVing because the helmet makes the magnet fall off anyway i can still live with it.

my Deaf peers, during my planning on getting CI for myself they weren't supportive about my choice that i want to have. After the surgery.. they're yet still my friend and support and hang out, chat, etc like we normally do everyday lifestyle and i'm glad about it.

As my love with scuba diving. I had to give up the deep-diving before the surgery i know and asked questions about scuba diving.. the funny thing is when i was having a meeting with surgeon. i asked him " am i allowed to go scuba diving?" he was surprised that i go scuba diving and says sure. but the manufactor for nucleus recommand up to 82 feet deep... 82 feet deep is very deep though.. and i accept that.. there's still beautiful waters, plants, fishes in 40 feet range.





i am enjo

Dear CI users, I have a question to you.


I use a HA and change the battery once every two weeks.

What about battery usage of CIs ?

Could you give me some information ? Thanks

DeafSCUBA98 said:

myself i'm 26.. become Deaf from menigits. got CI last year with freedom.

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Based on the argument against parents making the decision for children to get implanted, it appears that you should be accepted by your peers for making the decision on your own. You are old enough and educated enough to make this decision which may have a profound impact on your life. One thing that is not clear based on your post. Is the CI working for you? If it is, how would you say that it has impacted your life?

DeafSCUBA98 said:

my Deaf peers, during my planning on getting CI for myself they weren't supportive about my choice that i want to have. After the surgery.. they're yet still my friend and support and hang out, chat, etc like we normally do everyday lifestyle and i'm glad about it.

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Firstly I am glad that your peers that were not supportive are still your friends. That means they are true friends which are hard to come by. The true colors of those that abandon you as you assimilate with the hearing world will show through. They were not true friends to begin with. On another note, that comment intrigues me. Is the issue really if a parent should decide for a child to have an implant? You made the decision on your own but your peers weren’t supportive of your decision. It appears to me the REAL issue is how someone that is deaf (in any form) will choose to assimilate with the hearing world or even IF they will assimilate. Please correct me if I am wrong but it seems like assimilation is the real issue here.

I am visually impaired and have been since birth. To those that are against the parents making decisions for their children, I ask this. Should my parents have been allowed to make the decision to have my eye operated on? I was under two years old when I had that operation. The surgery carried risks and possible complications just as ANY operation does. If things went wrong I could have been left blind in one eye. The operation (if successful) also carried rewards and the promise to enhance the quality of my life. Did they make the right decision? Was it wrong for them to have me prescribed for glasses and wear them since I was two years old? I am glad that my parents did for me what they felt was in my best interest. Why, because I was way too young and not educated enough to make that decision for myself. If they chose to wait I would have paid a heavy price in terms of achievement. I am very happy they made that decision for me. I still wear glasses today and do so because it enhances the quality of my life by assimilating me with the "Seeing world".

So what is wrong with people making the decision to assimilate themselves with the "hearing world" or the "mobile world" (for those with mobility impairments) or any world for that matter? If someone (anyone) feels there quality of life will be enhanced by making decisions, who are we to say they are wrong? Who are we to say they can or can’t decide? The last time I checked this was America. A place where we are free to decide as long as we remain within the boundaries of the law. If you want to take away a parents right to do what they feel is in the interest of there child, I say GOOD LUCK to you. Good luck because you will have to change laws which will take a majority to accomplish. Trust me when I tell you this. The majority of responsible sane parents (deaf and hearing) will crush any attempt to take away our rights to choose. Those that want to take away parents rights are the minority and your attempts will be futile.

Also to those that are against CI’s in general, I ask you; do you believe nothing positive ever comes to those who are implanted? From what I have read here so far, those that have been implanted with successful results are very happy of their decisions. Also those that have been implanted by their parent’s decisions are happy with the results. So what is the real beef here? Its assimilation, isn’t it? Please correct me where I am wrong.

Thank you

Ecevit,

CI batteries are rechargable. Most of them, anyway. Thank goodness for electrolytic cell processes!

ecevit said:

Dear CI users, I have a question to you.


I use a HA and change the battery once every two weeks.

What about battery usage of CIs ?

Could you give me some information ? Thanks

Click to expand...

My Freedom goes through 3 batteries every 3 days. I use the ADRO map. I use the BTE Freedom and button-cell batteries aren't rechargable, so I don't have that benefit, but I'm sure they'll find a way to make them rechargable in the future.

ecevit said:

Dear CI users, I have a question to you.


I use a HA and change the battery once every two weeks.

What about battery usage of CIs ?

Could you give me some information ? Thanks

Click to expand...

Depends...

If you have a Freedom (Cochlear Inc.) like I do, you either use a BTE model that uses batteries the same size as P675s or a BWP (body worn processor) that uses a rechargeable battery. Note the P675 type batteries you get for your CI are not the same that you buy at Radio Shack. You need to get P675s for CIs due to its demand from a power standpoint (think of a CI like a little computer) Anyway, most people using the Freedom get about three days worth (I did ask my audi about this and she said that three days was typical). BTW...that is three batteries (in series) at the same time for three days. So, you typically will need about 300 batteries a year! There is good news for the near future as I have heard they are working on a rechargeable battery for the BTEs and it would be easy to swap out the battery compartments.

I can't vouch for the rechargeable batteries as I didn't get the BWP.

I assume the BTE is the little disc that sits on the back of the skull above and behind the ear? Or is it similar in shape to a HA BTE?

What is the advantage to going with a BWP - more power or signal processing?