JennyB

Hi all,

I am thinking about cochlear implants. I have always thought about it but now I am really thinking about it and thinking about going for the evaluations and really considering it. I have gone back and forth for a long time and I am at the point where it seems like going for the evaluation (and actually completing it) makes sense. It seems like before I put too much thought into anything I should establish a definite candidacy.

It is kind of scary though. I really have nothing to lose going to look into it. I am just a bit worried about my local community and their view point. We don't have many Deaf people with cochlear implants. In my own little community, we don't have any. It would be a political step for me too and I am not sure I am ready to make it. I would also be very concerned about how it may effect my disabilities, or how my disabilities may effect it. Lots of questions I guess. The CI center in this area is also very ANTI Deaf culture. They are strictly PRO CI and if you don't have one, your life isn't worth living because you are Deaf and therefore have no quality of life. I got that speech from an ENT in their CI program, as have others.

I am not sure what will come of all of this, but I am looking into it.

Jenny

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

Deafness

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souggy

Whereabout are you in Toronto? I find it hard to believe there are not a lot of people that have CIs.

Anyway, is it possible for you to travel to another clinic? Also, are you working with your audiologists? What do they have to say? Too bad you don't know anyone in the community with your CIs, so you can observe how well they immerse.

While the forum can offer you options and moral support, you would still need to find a real-life team that will support you and hold your hand through every step. Anyway, sounds like to me you need to find another clinic?

Hope you will be happy with your decision.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

JennyB

I live closer to Scarborough, but I mostly work and play downtown. There are plenty of people with CIs. I know many. The issue is I don't know many Deaf people with CIs. All of my friends with CIs don't sign, and if they do it is SEE, and they are strictly oral.

As far as I know Sunnybrook is our only option in Ontario. Going out of province isn't an option because of our health coverage...have to stay where OHIP is!

My audiologist is objective and great. She isn't pushing me either way and is doing what she can to help me research and figure it all out. We had a long talk about it today actually.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

souggy

That's stellar! I am not surprised at the SEE or oral thing in Canada, since that would be more related to the mainstream education rather than the actual implants. Have you asked one or your Deaf friends, or you're unsure about that yet?

According to Google, there's five clinics that are approved to perform cochlear implant surgeries. One of which is London University?

But glad that you got support from your audiologist!

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

deafdude1

Well, your audiogram would make you a great candidate. Even back in 1998 with your degree of hearing loss(110-120db) youd still be a candidate. I had only 100db loss(only 70db at 250Hz) in 1998(still 10db worse than what you had before your progressive loss) and I was aided to 35db which was as good as CI back then. I didn't give thought to CI in 1998 as CI would not have given me better hearing.

I started giving thought to CI in 2008 but by then, I begin to hear of alternative ways to regenerate hearing and this got me excited. I was sad when the experts said it would take 30 years for stem cells to come to fruition. I became so happy to find out the experts were very wrong! I could actually get stem cells today in China but they don't guarantee ill get a significent improvement and say the best is 30db improvement. So ill wait a few more years for stem cell technology to get better then ill go ahead. Have you seen my blog on why I choose stem cells?

I was actually thinking of getting a CI evaluation in a couple years from now, but no point anymore as im far more interested in stem cells. That's my choice. I respect whatever choice you make.

Will they reject you? You may want to discuss among your community what they think of CIs and why they would be for or against CI. Only you can decide if you want CI or not and if they stop being your friend, it's time to make new friends.

That makes your choice for CI very difficult. Will a CI work in your case? Will you just stop wearing it a month later as your brain can't get used to all the new sounds?

That's so insulting and if I were you, id never want a CI just so I don't have to deal with their rudeness! My life is fine being deaf(although im not in any Deaf cultures) my desire for stem cells is the convinence of having more access to sounds, the possibility of enjoying music and being able to understand some speech without reading lips. I want stem cells for much the same reasons as others want CI. All that CI hype makes me

Last week you said youd never get CI(nor stem cells) now you want CI? That is a hard choice only you can decide. There's an extremely good chance of you hearing much better, but the question is will your brain be able to handle CI and will you be happy with CI or prefer not to hear?

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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog

Lissa

Good luck with your decision Jenny!! Make the decision that YOUR happy with, not AD'ers, not your audi, not your local community in Toronto. YOU!! Take care! You need to be comfortable with the decision you make!

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lissa, 23, profound bilateral sensorineural hearing loss.
http://bioniclissa.blogspot.co.uk/

SkullChick

im naturally strong-minded person and doesnt give **** about what other people thinks but heres my insights, dont worry about what other deaf people think, just be strong and said look, im still deaf and do i still uses signs? yes am i still same jenny? yes so shush stop get all worked up over object behind my ear and focus on me and move on
if they reject you they're not worthy being your friend.
CI is mere object you'll be same deaf jenny. and it wont affect your disability because you're still deaf when its turned off and its not normal hearing so it will not change a thing except ability to hear better than ever when you want to and pop coil off when you want to be deaf

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[Left Ear] Implanted 1/15/08 with Nucleus Freedom!
Activated 2/12/08 with Freedom BTE
Link for my Cochlear Implant
http://skullchick.blogspot.com
Link for my Blog unrelated to cochlear Implant
http://skullchickworld.blogspot.com

faire_jour

I agree with the PP's. It is about your life and your happiness.

What do you hope to gain?
What is the best case, everything goes perfectly, success for you?
What would be your "reasonable expectations"?
What is your definition of failure with the CI?

I think those are the important questions to ask yourself.

overthepond

As other had said.... it's for you not anyone.... Good luck.

JennyB

Yes. I am quite content being Deaf and I don't want to cure myself.

I don't think they would outwardly reject me, no. My opinion is that they reject the person, not the device. I think if I were to get a CI and get all elitist and start being more oral then they would reject me. I think I got the CI and nothing changed then it wouldn't matter.

That would be the concern. With the sensory processing disorder that goes with autism we have no idea if I would be able to handle having a CI or what my brain would do with the sound.


I have flip-flopped on the CI thing for well over a year.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

JennyB

By disabilities I mean epilepsy and autism. Not being Deaf. I get nervous making my brain do new things in fear that my seizures will be triggered by it or something.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

JennyB

What do I hope to gain? My major is linguistics and my area of interest in phonetics. I would like to be able to do it a little easier. I have ways of doing what I need to do now but it takes a long time and there are some things I just can't do.

What is the best case, everything goes perfectly, success for you? Best case for me would be no surgery complications, my brain actually can learn t process the sound, and I am able to rely more on my hearing for phonetics and learning the sound based concepts for school. Do I have hopes of sitting in a lecture hall without terps and catching everything said? No. I do I have hopes of not having to lip read? No. I would just like to be able to use more hearing for phonetics.I think this answers the next question too...

What is your definition of failure with the CI? If I see no additional improvement, if my brain can't learn to process the sound, if it triggers seizures...but all of those things can be dealt with - I take off the CI and use my non-implanted ear and my hearing aid. Pretty simple.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

Hear Again

This is a valid concern JennyB. If you don't mind my asking, are you on any meds for your epilepsy? Perhaps you could ask a CI surgeon and/or your neurologist about how a CI would affect the possibility of causing a seizure. If truth be told, I think you're being very smart about this by not jumping into the decision one way or the other. Good for you!

cdmeggers

Good luck with whatever you decide to do! There is definitely a lot to consider, but only you know what you want for yourself. It couldn't hurt to at least go through the evaluation, and get as much info as you can from the center. They might have an idea on how a CI might work for someone who has austism and epilepsy, etc., then from there you could make your decision on what to do.

I just saw my new primary doctor and he's going to do a referral for me to get the implant (Medicaid guidelines, bah!), so I'm quite anxious to get going.

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Lighthouse77

Go for it if that what you want... If you already wear hearing aids, it is no different. I think a true deaf culture would not use hearing aids at all.

anyway, I have cochlear implant and it work out great.

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Good thing about standards is that there are so many of them to choose from.

Frisky Feline

That's great. go for it. I might get one for my own curiosity.

Hear Again

I don't mean to split hairs, but the sound of hearing aids is different from a CI -- especially if a person has been profoundly Deaf since birth. Some people report a mechanical sound to voices or hearing beep tones. Each person is different as to what they hear with their CIs (for example, I'm late deafened and everything sounds exactly the way I remember before losing my hearing), but I thought I'd mention this for those who are considering a CI for themselves. The last thing a person wants is to get a CI and expect to hear "normally." Another difference is that there are more mappings required during the first year following implantation. Hearing aids require programming as well, but not as much as a CI does during the first year it is activated.

Hear Again

JennyB,

For the record, I'm not trying to discourage you from getting a CI. I just wanted to point out some facts that people may want to be aware of.

Pinky

That's good for you to consider for CI. Don't listen what deaf people saying about CI. Just tell them it's your choice. You're adult now. You have to ask ENT doctor about your disability. Don't be afraid. The deaf people thought CI in brain surgery. That's not true. I offer you research over the internet. You can read the CI blog. Good luck on your decision!

JennyB

My seizures are active now and I am on medication - not that it does much. Sigh.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

JennyB

I am excited for you! It is a lot quicker of a process here in Canada. I could go from initial meeting with an audiologist to surgery day in 3 months. It's also covered by my provincial health care...

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

JennyB

I know :-). My audiologist and I have talked about it all a million and a half time. I like to be thorough and get EVERY side.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com

cdmeggers

3 months?! Lucky! for me, it's over 2 years now (with the initial evaluation having been done in Sept. 2007), but with no insurance/funding for all that time... weee.

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Lighthouse77

It didn't really take me long to be evaluation either. But we had to make sure our cochlear implant people to talk to our insurance about covering and it was all good to go.

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Good thing about standards is that there are so many of them to choose from.

Endy

I am in your same boat. I am thinking about CIs, too. I really need to talk to someone are proficient ASL that who already have CIs. I am pretty avoiding to talk to any Deaf person regarding CIs. They are pretty much Anti-CIs. It's pretty frustrating for trying to make a conversation with someone with an open-mind over CIs.

Anybody who is willing to have a time and chat via VP would be a great idea. I'd appreicate that.

SkullChick

you can ask me, ASL is my language grew up around deafies whole my life, immersed myself in deaf cultures so im pretty much the type you're looking for and i have CI.

__________________
[Left Ear] Implanted 1/15/08 with Nucleus Freedom!
Activated 2/12/08 with Freedom BTE
Link for my Cochlear Implant
http://skullchick.blogspot.com
Link for my Blog unrelated to cochlear Implant
http://skullchickworld.blogspot.com

deafdyke

Yes......I have to say you're right. CI isn't universally accepted in the Deaf culture......but it's slowly but surely becoming more accepted and common.
I think in five or ten years CI is gonna become more accepted in the Deaf community.
I'm not an audi but if sounds wouldn't trigger seizures with your hearing aid....I don't think that it would trigger seizures with CI. You're basicly just gonna have more access to sound.....
Jenny......kind of off topic, but you don't seem autistic to me. Your grasp on language is very good. Or do you have Asperger's Sydrome? Asperger's isn't exactly autism. It's more like having a cold vs. having pneumonia.

Banjo

Jenny, I know it's a big decision. The important thing is that you should make the decisions for yourself, not anybody else.

So if a cochlear implant is what you want, you should go for it. If you are still on the fence, take your time. There's no rush. If you end up not wanting it, that's your decision.

Do whatever it takes to make yourself happy.

Wendy H

Jenny,
What do you hope to get out of a CI? Possibly answering that question for yourself might help you to come to a decision . . ?

JennyB

Anything that involves doing something different with my senses can trigger seizures. Auditory input does trigger them for me.

I have high functioning autism. There are differences between that at Aspergers. Contrary to popular belief you can be very intelligent with HFA. I know one person who learns entire languages (fluently) within 2 weeks. He is a savant, but it proves that HFA doesn't mean language difficulties in all cases. The difference between the two diagnoses really has to do with when developmental milestones are hit, less to do with the final outcome. I also have more sensory integration issues than the typical person with AS, hence the HFA diagnoses.

However, some psychologists would label me as PDD-NOS too, which is more of a catch-all diagnosis.

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Jenny~B
http://fiestydeafanddisabled.wordpress.com