I am mad that I have CI *sigh*

01-27-2007, 08:39 PM

I got my CI when i was 4 because my parents want me to..
till last year, I refuse to hear and use CI because I want to be 100% deaf.. so I fought my parents for 8-11months about wearing the CI..
Then I won the war from my parent but...
I still have CI thing inside my head.. I want it off..
And still blame myself because I did hear things..i still remeber the hearing noise from my past..
I dont want that..
I want the world mystery of sound to me when i am deaf..
I want to have Pure body..I mean Become Vegan when I was born and No machine sticky to my body but that hasnt happen to me..
that what i mean about Pure Body..
*sigh*

shel90 · 01-27-2007, 08:43 PM

Wow...wonder if there will be many deaf people with the same issues 18 years from now?

Did u check with your doctors about getting the implant removed?

01-27-2007, 08:46 PM

Quote:

Originally Posted by shel90

Wow...wonder if there will be many deaf people with the same issues 18 years from now?

Did u check with your doctors about getting the implant removed?

Not yet.. but ill get it off when i am done with my college...that when i will be 24 or 25 years old...still have long way to go.. *sigh*

lumbingmi · 01-27-2007, 10:31 PM

Yea it sucks that parents are forcing CI on helpless kids and try to "fix" them without know that deaf are able to function without any kind of helps.

animal lover, u should preach and inspire many others that CI is piece of shit.

LuciaDisturbed · 01-27-2007, 10:43 PM

Quote:

Originally Posted by KINGOFNOOBS

Yea it sucks that parents are forcing CI on helpless kids and try to "fix" them without know that deaf are able to function without any kind of helps.

animal lover, u should preach and inspire many others that CI is piece of shit.

CI is not a piece of shit.

Dino65 · 01-27-2007, 10:46 PM

Sorry about this. Just hang it there til you have a time to have your CI removed. Take a lot of patience. Some people like CI or not. It is up to everyone who wishes to have it removed. Like Lucia who is an adult and makes her own choice -- she is very happy with it which is great. But Animal_Lover -- this is a different story .. grew up with a lot of criticisms and oppression etc etc.

deafskeptic · 01-27-2007, 10:46 PM

I agree with Lucia.

However, I acknowledge that CIs won't work for everyone.

SteveESP52 · 01-27-2007, 10:48 PM

Animal Lover -

Sorry you did not benefit from the CI and sounds like you have been struggled with it for quite some time before shelving it. I'm asking the question since it sounds like you live with no sound 24/7. I don't know much history on you and if you are deaf or have a profound hearing loss. Kind of new here. Sorry.

I do have a real question for you though. You mention you don't wear the processor but do you ever pick up sound from the implant. Also, do you experience any ringing/tinnitus from the implanted side? Just curious. Specifically on the implanted side, do you hear any noise or buzz when you are around radio or TV towers. I am asking this question for real.

I live about 1000 feet from a radio/TV/Cell phone tower and at night with the processor off and I hear nothing, I pick up a buzz from the implant. It is quieter than the tinnitus I have in my other ear so it is not very loud but I do hear it. For others reading this, it is some what similar when the Telecoil is activated and walking under high power electrical transmission lines. 60 hertz is what I'm hearing. Do you experience the same or anything similar?

Just wondering here.

DevBaby · 01-27-2007, 11:36 PM

I will not read something like this again..

shel90 · 01-28-2007, 01:55 PM

Quote:

Originally Posted by DevBaby

I will not read something like this again..

What do u mean?

lumbingmi · 01-28-2007, 02:05 PM

Quote:

Originally Posted by LuciaDisturbed

CI is not a piece of shit.

Yes they are to me IMO.

Cloggy · 01-28-2007, 02:18 PM

In my opinion,

Your parents gave you a gift and opportunities....
It didn't work out for you, so it's up to you to stop using it.

But I would not hold it against your parents that you have CI. They took a difficult decision and they did it out of love for you. Understand their side that they want you to keep using it.

BTW, do you use sign? Do your parents use sign?

You said "...... but ill get it off when i am done with my college..." does that mean that you are still wearing / using CI? Or do you mean that you will take it out??

Spock · 01-28-2007, 03:11 PM

Quote:

Originally Posted by Cloggy

In my opinion,

Your parents gave you a gift and opportunities....
It didn't work out for you, so it's up to you to stop using it.

But I would not hold it against your parents that you have CI. They took a difficult decision and they did it out of love for you. Understand their side that they want you to keep using it.

BTW, do you use sign? Do your parents use sign?

You said "...... but ill get it off when i am done with my college..." does that mean that you are still wearing / using CI? Or do you mean that you will take it out??

Cloggy,

I understand your situation. You have to weigh two things: putting a machine in your child's head versus allowing your child to remain deaf.

From the perspective that the hearing world is more beneficial (in any way) than the deaf world, someone would choose the CI.

If not, then ask yourself, why even consider a CI in the first place?

However, go a step further and think about the pros and cons.

Consider your child in the future - perhaps fulfilling more potential in the hearing world, but potentially disturbed that he/she has a machine in his/her head.

What if your child wants to be a scuba diver (below 100 meters) or an astronaut? What about possibilities that cannot be fulfilled now because of the CI?

What if your child eventually feels like others modified his/her body in a way that is irreversible except through intensive surgery?

A greater love might be to consider the child's feelings rather than yours. Is it you, rather, that is afraid that the child won't be able to accomplish as much in the deaf world versus the hearing world?

Are you afraid that your child's intelligence will be lower as a consequence of being deaf? Look at me, I have been 100% deaf since 2 years old, but I score higher on standardized tests than 99.99% of the nation.

Intelligence can be relative to how the child is raised, methods of being taught, and the creativity and intelligence of the parents themselves.

I was given a CI on the left side when I was 3 years old, and a CI on the right side when I was 16 years old. Most of it was my parent's decision rather than mine, yet it was my own body.

I was never able to distinguish consonants and vowels apart from each other. Yet my parents did it "out of love" in their own best interests, thinking it would also be in my own best interest.

But I enjoy being deaf. There is nothing wrong with it. If my CI allowed me to distinguish between consonants and vowels, maybe I would've seen the benefits, and enjoyed life more, but in the end it would've limited me in other ways and still been an imposing of their will on my body that may as well be irreversible.

The benefits of hearing may be numerous, but is it worth a child being used in a way that is irreversible?

You'll hear many deaf children being very happy with their CI - but you also have to think about the child's feelings about having a CI in the body, whether it's had positive or negative results.

I can tell you that I wish my parents had never forced a CI into my body, and let me make the decision at a later age despite what the doctors say that putting in a CI is more likely to be successful at a young age.

Because then it would've been my own decision, not theirs. It would've been my own decision about my own body.

Listen to what a deaf child (your child) may have to say, more than what the parent (you) think. Respect how the child may feel and let the child find acceptance through being deaf; if the child wishes to have a CI later, let the child do it at an age when he/she is capable of making an educated decision.

This is my point of view, as well as that of many deaf children and adults out there. Which would be the greater love: to listen to them or to listen to yourself?

deafskeptic · 01-28-2007, 03:18 PM

Quote:

Originally Posted by KINGOFNOOBS

Yes they are to me IMO.

If they are truly pieces of shit, I would expect an 80% to 100% failure rate in cochlear implants among people who underwent surgery. How do we define cochlear failures? It's defined by this citeria:

# The skin flap can become infected.
# The body can reject the implant
# The implant receiver can extrude.
# The electrode array can get damaged or the electrodes were not put in right. Or the electrode array can migrate out of place.
# The implant simply does not work right

According to several sites on CI failures, only 1% to 4% of CIs fail. Not bad for "pieces of shit."

Even among failures, a second implant to replace the failure will work most of the time.

Now no one has ever claimed that implants will make you hearing or even understand speech. That often requires a lot of therapy. My audiologist pointed out to me that since I'm prelingually deaf and an adult, it will be harder for me to understand speech than if I had been born hearing and lost hearing after age 3. I will never be hearing even with CIs.

According to several of Cloggy's posts, implants are most likely to work on babies when they are implanted around age 1. I'm sure he can back up his claims with data.

I note that Animal lover was implanted at age 4 and outcomes are not nearly as likely to be successful after age 3. Unless she is having health problems with her CI, she's not likely to get it removed.

Most of the parents here have thought long and hard about the implants and success has varied a bit; I recall that Rockdrummer's son had an CI and it didn't work for him. Lotte and Lily seem to have had better outcomes than Rockdrummer's son. I always hope the parents will learn sign language for their CIs as the outcomes for CIs can vary a lot. I hate hearing about cases like those Shel90 has to deal with in her job. I wish more parents with CIs would be like the parents around here.

Success is most likely with babies under age 3 or with adults/children who were born hearing and became deaf after age 3.

if CIs are truly pieces of shit, can you back up your claims with data? I'm waiting.

TweetyBird · 01-28-2007, 05:32 PM

i undy how ur feeling abt this.. u wanna CI get out of in ur head.. have u try talk to dr abt this??

RedheadGrrl · 01-28-2007, 05:40 PM

Quote:

Originally Posted by KINGOFNOOBS

CI is piece of shit.

They arent!!! Have you try?? If no, then you dont know nothing..

TweetyBird · 01-28-2007, 05:47 PM

Quote:

Originally Posted by RedheadGrrl

They arent!!! Have you try?? If no, then you dont know nothing..

true i agree with u abt this..

Cousin Vinny · 01-28-2007, 05:49 PM

Quote:

Originally Posted by deafskeptic

How do we define cochlear failures? It's defined by this citeria:

# The skin flap can become infected.
# The body can reject the implant
# The implant receiver can extrude.
# The electrode array can get damaged or the electrodes were not put in right. Or the electrode array can migrate out of place.
# The implant simply does not work right

While that kind of criteria is fine, IMO, it still misses the mark by a mile. (And then some!)

For adults, the success rate of the implant should also be measured by audiometric data such as speech discrimination levels before/after the implantation. If there's an increase, then the patient can be reasonably sure that his/her implant is working as intended.

For infants/children, the success rate of the implant should be measured differently and is much harder to gauge. These children should be tested on their language development according to objective, standardized, and normed criteria.

That all said, there's no perfect way to test a successful implantation. A lot of factors, including subjective ones, goes into the overall sense of success/failure for each and every CI receipient.

Not surprisingly, that there are still developmentally-delayed Deaf children with CI's, the jury is still out as far as the Deaf community is concerned. It isn't some POS, but needs to be further developed by the medical community. I read somewhere that the device manufacturers are now considering fiber optics (lasers?) to supplement the CI electrode array. Those kind of developments continue to be the key to the future 'success' of the CI approach, and widespread acceptance/usage in the Deaf community.

shel90 · 01-28-2007, 05:51 PM

Quote:

Originally Posted by Spock

Cloggy,

I understand your situation. You have to weigh two things: putting a machine in your child's head versus allowing your child to remain deaf.

From the perspective that the hearing world is more beneficial (in any way) than the deaf world, someone would choose the CI.

If not, then ask yourself, why even consider a CI in the first place?

However, go a step further and think about the pros and cons.

Consider your child in the future - perhaps fulfilling more potential in the hearing world, but potentially disturbed that he/she has a machine in his/her head.

What if your child wants to be a scuba diver (below 100 meters) or an astronaut? What about possibilities that cannot be fulfilled now because of the CI?

What if your child eventually feels like others modified his/her body in a way that is irreversible except through intensive surgery?

A greater love might be to consider the child's feelings rather than yours. Is it you, rather, that is afraid that the child won't be able to accomplish as much in the deaf world versus the hearing world?

Are you afraid that your child's intelligence will be lower as a consequence of being deaf? Look at me, I have been 100% deaf since 2 years old, but I score higher on standardized tests than 99.99% of the nation.

Intelligence can be relative to how the child is raised, methods of being taught, and the creativity and intelligence of the parents themselves.

I was given a CI on the left side when I was 3 years old, and a CI on the right side when I was 16 years old. Most of it was my parent's decision rather than mine, yet it was my own body.

I was never able to distinguish consonants and vowels apart from each other. Yet my parents did it "out of love" in their own best interests, thinking it would also be in my own best interest.

But I enjoy being deaf. There is nothing wrong with it. If my CI allowed me to distinguish between consonants and vowels, maybe I would've seen the benefits, and enjoyed life more, but in the end it would've limited me in other ways and still been an imposing of their will on my body that may as well be irreversible.

The benefits of hearing may be numerous, but is it worth a child being used in a way that is irreversible?

You'll hear many deaf children being very happy with their CI - but you also have to think about the child's feelings about having a CI in the body, whether it's had positive or negative results.

I can tell you that I wish my parents had never forced a CI into my body, and let me make the decision at a later age despite what the doctors say that putting in a CI is more likely to be successful at a young age.

Because then it would've been my own decision, not theirs. It would've been my own decision about my own body.

Listen to what a deaf child (your child) may have to say, more than what the parent (you) think. Respect how the child may feel and let the child find acceptance through being deaf; if the child wishes to have a CI later, let the child do it at an age when he/she is capable of making an educated decision.

This is my point of view, as well as that of many deaf children and adults out there. Which would be the greater love: to listen to them or to listen to yourself?

to your posting!

deafskeptic · 01-28-2007, 06:15 PM

Quote:

Originally Posted by Eyeth

While that kind of criteria is fine, IMO, it still misses the mark by a mile. (And then some!)
For adults, the success rate of the implant should also be measured by audiometric data such as speech discrimination levels before/after the implantation. If there's an increase, then the patient can be reasonably sure that his/her implant is working as intended.

You raise some excellent points here. However, some people will be happy to hear environmental sounds even if they can't understand speech. I hope to be able to understand speech one day but I don't expect to be able to understand it. I'll be happy if I can hear a lot more than I do with my HA. If I can't understand speech and I'm happy with the results, does this mean the CI is a failure?

Quote:

Originally Posted by Eyeth

For infants/children, the success rate of the implant should be measured differently and is much harder to gauge. These children should be tested on their language development according to objective, standardized, and normed criteria.[/QUOTE
Yeah. It's been hard to find objective data on children.

That all said, there's no perfect way to test a successful implantation. A lot of factors, including subjective ones, goes into the overall sense of success/failure for each and every CI receipient.

True. I have always wondered why CIs don't work in some cases and what factors causes the outcome to be poor. Is it because the parents didn't work on the child's progress? Is it because the child wasn't used to hearing anthing and no one factored that into the mapping sessions or was there a lack of commiucation regarding the implant and the child's reaction to it?

Quote:

Originally Posted by Eyeth

Not surprisingly, that there are still developmentally-delayed Deaf children with CI's, the jury is still out as far as the Deaf community is concerned. It isn't some POS, but needs to be further developed by the medical community. I read somewhere that the device manufacturers are now considering fiber optics (lasers?) to supplement the CI electrode array. Those kind of developments continue to be the key to the future 'success' of the CI approach, and widespread acceptance/usage in the Deaf community.

Hence why I want parents of CIs to learn sign just in case. Second, no one wears CIs all the time and you do need to be able to communicate somehow even if the CI is a success.

rockdrummer · 01-28-2007, 06:40 PM

Please remember that any surgury has risks. Whenever evaluating risk you have to ask yourself, what is the benefit? If the benefit outweighs the risk then you may want to consider going through with it. One risk of surgury as that you may not wake up, or the entire side of your head may remain numb for the rest of your life. I am sure there are many other risks that your doctor should go over with you. Is the benifit of not having something in your body worth those risks? Even your doctor will tell you this. I have been in accidents where they have mechanically wired and screwed me back togehter. My bones have fused and I really don't need the metal in me anymore but I am not going to have it removed becuase the risk doesn't outweigh the benefit. To me there is no benefit. I don't feel any less pure because I have forigen objects in several parts of my body.

The CI didn't work for my son and I would think it's a terrible waste to have your CI removed if you have had any benefit from it. I think that it's good for you to have a thread like this that shows a different perspective. I too am curious if you ever had any benefit from the CI? Or are you so upset with your parents for having you implanted that you never even gave it a chance?

shel90 · 01-28-2007, 06:46 PM

Quote:

Originally Posted by rockdrummer

Please remember that any surgury has risks. Whenever evaluating risk you have to ask yourself, what is the benefit? If the benefit outweighs the risk then you may want to consider going through with it. One risk of surgury as that you may not wake up, or the entire side of your head may remain numb for the rest of your life. I am sure there are many other risks that your doctor should go over with you. Is the benifit of not having something in your body worth those risks? Even your doctor will tell you this. I have been in accidents where they have mechanically wired and screwed me back togehter. My bones have fused and I really don't need the metal in me anymore but I am not going to have it removed becuase the risk doesn't outweigh the benefit. To me there is no benefit. I don't feel any less pure because I have forigen objects in several parts of my body.

The CI didn't work for my son and I would think it's a terrible waste to have your CI removed if you have had any benefit from it. I think that it's good for you to have a thread like this that shows a different perspective. I too am curious if you ever had any benefit from the CI? Or are you so upset with your parents for having you implanted that you never even gave it a chance?

U have a good point about evaluating the risks the surgery may involve but the problem is that Animallover was too young to make those decisions. He couldnt determine whether the risks outweigh the benefits or not. That is the big difference and I think that is why Animallover is upset about that. If I am wrong, then I am sure Animalover will let me know.

R2D2 · 01-28-2007, 06:57 PM

Quote:

Originally Posted by Spock

If my CI allowed me to distinguish between consonants and vowels, maybe I would've seen the benefits, and enjoyed life more, but in the end it would've limited me in other ways and still been an imposing of their will on my body that may as well be irreversible.

The benefits of hearing may be numerous, but is it worth a child being used in a way that is irreversible?

You'll hear many deaf children being very happy with their CI - but you also have to think about the child's feelings about having a CI in the body, whether it's had positive or negative results.

I think these are the interesting parts of your post to me. You are speaking with the perspective of someone that has "failed" with the CI and that failure then lead to feelings that you have a "machine" that was forced into your body against your will. That's natural to feel that way. We do all tend to feel negative about any process that hasn't worked for us. I know I do!

However it's impossible for parents of children to know in advance what the outcome of a potential CI and how their children are going to feel. There is someone like you with the thoughts that you have outlined above and then there are those who are really happy with themselves as deaf people with CIs and who do not feel limited. Most CI implantations on young children according to studies are at least reasonably successful and lead to good emotional wellbeing and confidence.

I think that all parents can do is to read stories like yours as well as the success stories so that they can prepare themselves for when and *if* their child does experience those feelings and use the help of therapy and counselling to help them come to terms. I underline "if" because not all of us feel like we have a "machine" in our heads - I don't even think about it to be honest. And I still feel that I am deaf too. Deafness is not an either/or thing for me. And I don't feel limited by my CI at all. I can throw myself into deaf culture if I want to and into the hearing world if I want to at different times.

We are all different and come to different feelings and conclusions. If I were to have a profoundly deaf baby one day that could not benefit at all from hearing aids I will make no assumptions. I will simply provide the tools and then let that child self determine with those tools when they are of age.

01-28-2007, 07:20 PM

Quote:

01-27-2007, 08:39 PM	#1 (permalink)
Animal_Lover Guest Posts: n/a	I am mad that I have CI sigh I got my CI when i was 4 because my parents want me to.. till last year, I refuse to hear and use CI because I want to be 100% deaf.. so I fought my parents for 8-11months about wearing the CI.. Then I won the war from my parent but... I still have CI thing inside my head.. I want it off.. And still blame myself because I did hear things..i still remeber the hearing noise from my past.. I dont want that.. I want the world mystery of sound to me when i am deaf.. I want to have Pure body..I mean Become Vegan when I was born and No machine sticky to my body but that hasnt happen to me.. that what i mean about Pure Body.. sigh

01-27-2007, 08:43 PM	#2 (permalink)
shel90 Sun Whorshipper Join Date: Sep 2006 Location: A Desert Rat that has found herself in Maryland Posts: 16,155 Blog Entries: 1	Wow...wonder if there will be many deaf people with the same issues 18 years from now? Did u check with your doctors about getting the implant removed? __________________ ~Shel~ "A child educated only at school is an uneducated child." -George Santayana

01-27-2007, 10:31 PM	#4 (permalink)
lumbingmi Invigorated Join Date: Aug 2006 Posts: 4,263	Yea it sucks that parents are forcing CI on helpless kids and try to "fix" them without know that deaf are able to function without any kind of helps. animal lover, u should preach and inspire many others that CI is piece of shit. __________________ Picard: Seize the time, Meribor, live now. Make now always the most precious time. Now will never come again. Meribor: I love you, father.

01-27-2007, 10:46 PM	#7 (permalink)
deafskeptic AAACCK! I got BORGED! Join Date: Sep 2006 Posts: 2,452	I agree with Lucia. However, I acknowledge that CIs won't work for everyone. __________________ Left ear implanted with Med-El on April 24 2007. Activated on May 9th.

01-27-2007, 10:48 PM	#8 (permalink)
SteveESP52 Registered User Join Date: Dec 2006 Posts: 62	Real Animal Lover - Sorry you did not benefit from the CI and sounds like you have been struggled with it for quite some time before shelving it. I'm asking the question since it sounds like you live with no sound 24/7. I don't know much history on you and if you are deaf or have a profound hearing loss. Kind of new here. Sorry. I do have a real question for you though. You mention you don't wear the processor but do you ever pick up sound from the implant. Also, do you experience any ringing/tinnitus from the implanted side? Just curious. Specifically on the implanted side, do you hear any noise or buzz when you are around radio or TV towers. I am asking this question for real. I live about 1000 feet from a radio/TV/Cell phone tower and at night with the processor off and I hear nothing, I pick up a buzz from the implant. It is quieter than the tinnitus I have in my other ear so it is not very loud but I do hear it. For others reading this, it is some what similar when the Telecoil is activated and walking under high power electrical transmission lines. 60 hertz is what I'm hearing. Do you experience the same or anything similar? Just wondering here.

Today
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01-27-2007, 10:46 PM	#6 (permalink)
Dino65 Registered User Join Date: Aug 2005 Posts: 491	Sorry about this. Just hang it there til you have a time to have your CI removed. Take a lot of patience. Some people like CI or not. It is up to everyone who wishes to have it removed. Like Lucia who is an adult and makes her own choice -- she is very happy with it which is great. But Animal_Lover -- this is a different story .. grew up with a lot of criticisms and oppression etc etc.

01-27-2007, 11:36 PM	#9 (permalink)
DevBaby Registered User Join Date: Jan 2007 Location: Columbus, Ohio Posts: 56	I will not read something like this again.. __________________ Nucleus Freedom - Left Ear Implanted 01/25/07 Activated 02/26/07

01-28-2007, 02:18 PM	#12 (permalink)
Cloggy Up to a loud future ! Join Date: Feb 2005 Location: Norway Posts: 3,794 Blog Entries: 5	In my opinion, Your parents gave you a gift and opportunities.... It didn't work out for you, so it's up to you to stop using it. But I would not hold it against your parents that you have CI. They took a difficult decision and they did it out of love for you. Understand their side that they want you to keep using it. BTW, do you use sign? Do your parents use sign? You said "...... but ill get it off when i am done with my college..." does that mean that you are still wearing / using CI? Or do you mean that you will take it out?? __________________ . The limits of my language mean the limits of my world. . . . Ludwig Wittgenstein (1889 - 1951) Information about . . . . . . . . . My daughter . . . . . . . . . How the ear works . . . . . . . . . Nonsense/ Myths about CI, here,or here.

01-28-2007, 05:32 PM	#15 (permalink)
TweetyBird ~ Fall ~ Join Date: Dec 2003 Posts: 21,406	i undy how ur feeling abt this.. u wanna CI get out of in ur head.. have u try talk to dr abt this?? __________________ CHECK MY ALBUM PICTURES!!!!

01-28-2007, 06:40 PM	#21 (permalink)
rockdrummer Always 1 beat off Join Date: Feb 2006 Location: Chicago area Posts: 3,008	Please remember that any surgury has risks. Whenever evaluating risk you have to ask yourself, what is the benefit? If the benefit outweighs the risk then you may want to consider going through with it. One risk of surgury as that you may not wake up, or the entire side of your head may remain numb for the rest of your life. I am sure there are many other risks that your doctor should go over with you. Is the benifit of not having something in your body worth those risks? Even your doctor will tell you this. I have been in accidents where they have mechanically wired and screwed me back togehter. My bones have fused and I really don't need the metal in me anymore but I am not going to have it removed becuase the risk doesn't outweigh the benefit. To me there is no benefit. I don't feel any less pure because I have forigen objects in several parts of my body. The CI didn't work for my son and I would think it's a terrible waste to have your CI removed if you have had any benefit from it. I think that it's good for you to have a thread like this that shows a different perspective. I too am curious if you ever had any benefit from the CI? Or are you so upset with your parents for having you implanted that you never even gave it a chance?

01-28-2007, 07:20 PM	#24 (permalink)
Animal_Lover Guest Posts: n/a	Quote: