Another CI failure story. No improvement in speech!

#21
What I read said:

She got the CI, and it worked well. She was hearing better. She could hear many new sounds. She went from being able to hear that "someone was talking" to "understanding common words". That is a big jump in functioning.

Then her CI malfunctioned and she chose not to fix it. Totally her right, and decison.



By the way- Thanks for the compliment about Miss Kat's progress, but she is FAR from an "amazing success story". Her progress is pretty average, and she is not considered a "star user" or even a "A" user (as defined by the Ausplan curriculum developed by Oakland Children's Hospital using a studies of young implanted children.)
 
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rockdrummer

Guest
#22
What I read said:

She got the CI, and it worked well. She was hearing better. She could hear many new sounds. She went from being able to hear that "someone was talking" to "understanding common words". That is a big jump in functioning.

Then her CI malfunctioned and she chose not to fix it. Totally her right, and decison.



By the way- Thanks for the compliment about Miss Kat's progress, but she is FAR from an "amazing success story". Her progress is pretty average, and she is not considered a "star user" or even a "A" user (as defined by the Ausplan curriculum developed by Oakland Children's Hospital using a studies of young implanted children.)
Exactly. I don't know that I would consider that a failure story. To me a failure story is when there is zero benefit.
 
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rockdrummer

Guest
#25
hum bug. deafdude, seriously, get a life and quit bringing in non-sourced garbage to these boards. geez!
Bingo!! Without a source it's nothing more than hearsay. Even with a source it's possibly questionable depending on the source. I would like to see a reliable source that says you can get electrical shocks in your head from a CI.
 

Lissa

Active Member
Premium Member
#26
Bingo!! Without a source it's nothing more than hearsay. Even with a source it's possibly questionable depending on the source. I would like to see a reliable source that says you can get electrical shocks in your head from a CI.
I have proof of this as my friend has experienced it because her electrodes was failing but I don't have any proof. It's fine that you need proof, I just cannot provide it
 

Pinky

New Member
#27
I suggest you ignore the guy who created obsessive threads about anti-ci. He painted on pro-CI people to make look bad! He never change his way. He think he know it all about CI isn't success. He have no proof it. He need to straight go to audiologist to ask the question about CI without misinformation and mislead. Many members are sick of him! He need to stop being negative toward CI and bring up the threads. He couldn't stop it. He need to be ban from AD to learn his lesson. The best is IGNORE him!
 

Lissa

Active Member
Premium Member
#28
I suggest you ignore the guy who created obsessive threads about anti-ci. He painted on pro-CI people to make look bad! He never change his way. He think he know it all about CI isn't success. He have no proof it. He need to straight go to audiologist to ask the question about CI without misinformation and mislead. Many members are sick of him! He need to stop being negative toward CI and bring up the threads. He couldn't stop it. He need to be ban from AD to learn his lesson. The best is IGNORE him!
Most of us ignore him we're just telling him that he is wrong etc and why. That's all.
 
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rockdrummer

Guest
#31
I have proof of this as my friend has experienced it because her electrodes was failing but I don't have any proof. It's fine that you need proof, I just cannot provide it
I don't doubt that your friend had sensations that may have felt like shocks. The question is if an intact CI is even capable of actually generating shocks.
 
#32
There are going to be success and failure stories about everything. And I do mean everything. In matters like this when it comes to a "device". They are not particularly "Device" failures. They are individual results and it's widely known in this case that the CI will bring better results for some then others. I am at the point right now awaiting for my activation day and I know that no one knows how well I'll be able to hear.

But I'll tell you this. A person who is putting all their hope into a device to solve their problems are setting themselves up for failure. It's not up to the device to solve their problems. It's a device to "aid" a person toward their goals. If a person has the mind set that they are going to get a CI and it'll improve their speech. They are going to fail every time. If they have to goal to improve their speech and get a CI in hopes to give them an edge toward their goal then they'll have a chance of reaching that goal.

If the CI fails to work then it can be repaired. This story also seems to be about someone who was implanted years ago and the technology has come a long way since then. This individual who's CI stopped working needs to talk to their doctor and get it repaired or replaced. This is something that can and has been achieved by many people who got early implants.

I'm reminded of a group who designed a machine to be a perfect bowler. It was made to bowl a strike every time and their calculations where perfect. They considered all aspects such as balance, weight, friction. It should have gotten a strike every time it rolled the ball down the ally but it only got a strike about 60% of the time. Why? because the machine that rolls the ball down the ally isn't the only thing that effects the outcome. The condition of the lanes, even the temperature of the room effects the ally.

Again, when someone gets a device to solve their problem they will most likely fail. Get a device to aid their goal with realistic expectations then they have a chance.

Ron Jaxon
 
#33
I don't doubt that your friend had sensations that may have felt like shocks. The question is if an intact CI is even capable of actually generating shocks.
No more then it would be to if you out your tongue on a battery. And the 2 or 3 batteries in a CI does not have enough power to do this with anything more then the sensation that static electricity could give.
 
#35
I for one don't mind reading what those who don't want the CI have to say. All opinions matter to me as long as their opinion is based on something solid. I mean I don't expect everyone with hearing loss to want a CI.

But sorry to say this one is a pretty poor example of a "CI failure". I don't see it as one. It just seems to me that it's about someone who got an earlier model of the implant (Going by the OP it was about someone who was implanted more then 5 years ago at least). Expected it to solve all their problems and didn't look into it enough to know that it's not a miracle cure. And got upset when they realized they where still Hard of hearing. I know of plenty of stories like that about many things (Eye glasses, winter coat and breast implants). Well, I'd imagine breast implants usually get more immediate and desired results. LOL :P

Ron
 

shel90

Audist are not welcome
Premium Member
#36
My coworker has a wife whose CI doesnt work at all for her. She got implanted 3 years ago and she hears absulotely nothing with it. He says that she hates it so much and regrets getting it.
 
#37
This is where RonJaxon is correct about devices having flaws/failures.

Last week, my new white cane broke when hubby accidentally stepped on it, the bottom part of the white cane snapped.

This is where the device has its flaw/failure but you don't see me spouting negativity about the white cane because that's where I can get a replacement because I am actually supposed to have a replacement or a back-up cane ready in case of an event like this happening.

This is where I get annoyed when people use CI misinformation or propaganda about the CI because of a flaw/failure.

Please refrain from doing so.
 
#38
There are going to be success and failure stories about everything. And I do mean everything. In matters like this when it comes to a "device". They are not particularly "Device" failures. They are individual results and it's widely known in this case that the CI will bring better results for some then others. I am at the point right now awaiting for my activation day and I know that no one knows how well I'll be able to hear.
Very true. While it is not rocket science especially nowadays, there are still variables in the process that makes it sometimes problematical.

RonJaxon said:
But I'll tell you this. A person who is putting all their hope into a device to solve their problems are setting themselves up for failure. It's not up to the device to solve their problems. It's a device to "aid" a person toward their goals. If a person has the mind set that they are going to get a CI and it'll improve their speech. They are going to fail every time. If they have to goal to improve their speech and get a CI in hopes to give them an edge toward their goal then they'll have a chance of reaching that goal.

...
Excellent observation. All things being equal, a person's drive and determination to make best use of a device or aid goes a long way to overcoming obstacles.
 
#39
I am not going to argue with any of you. I did warn you that if you are biased, this thread would make you mad. I just wanted to provide perspective that CI is excellent for some(well, most) but a disaster for some as well. Let's put our pro-ci bias aside and see both sides of the fence. You congratulate those with excellent results and dismiss those with bad results. Shel has been trying to speak of her own observations of CI results and you don't take her seriously. You only accept the positive results.

I found her CI failure story on alldeaf but forgot which thread it was. Her CI worked for 5 years but did not give her much speech, although it gained her access to more environmental sounds than HAs. I have the feeling she was not informed that CI does not give everyone near 100% speech and she had unrealistic expectations. Everyone has the right to be informed so they can make an informed choice, that's all im saying. There would be alot more happy CI wearers if they only would be realistic in their expecations. They need to see both the pros and cons of CI like I do.

http://www.alldeaf.com/hearing-aids...about-negatives-aspects-ci-should-notify.html

(post #11)

If my husband had thought for one moment that he would be living the rest of his life with vertigo and that several times a day his whole world would spin, I highly doubt he would have gone through with implantation. Yes, he is in the minority of those who have had difficulties with implantation. Yes, he is now able to hear. Is it worth it to him? NO He was able to function quite well in life prior to implantation, and now his entire personality has changed and it has taken its toll on the entire family.

I wish someone had said, "hey, there is a possibility that such and such could happen if you get implanted". Maybe he would have made a different decision, one that he won't regret for the rest of his life.
This is why posts like his should be taken seriously and factored into the CI risk. All im trying to say is that CI is not 100% risk free like some people here think. I respect those who make the difficult choice, but they must be informed first.

(post #12)

But, how can a parent make an informed decision regarding any aspect of their child's future without having the information necessary to weigh pros and cons? Not having complete information is having negative affects onthe language development and educational acheivement of numerous deaf children. To simply ignore the negative rather than investigate it and weigh it against the postive is nothing more than the avoidance of reality.
This is what I feel is going on. You guys are getting mad and ignoring the negative im posting about.

I am so sorry about your husband's complications, but it is a perfect example of candidates not being suppplied with all of the information they need to make an informed choice.
This is why I am supplying the necessary information.

OMG I cant believe ANY parent would choose to ignore the negative aspect of implanting a child. To ME right there would be considered child abuse. IMHO you cannot implant without making an informed decision. Informed means not just the positive but the negatives as well.

For example, if I had a child that needed a artificial leg, I would not just say oh go ahead and do it as the positives will outweigh the negatives so I dont need to hear them! My goodness, that right there would be saying I dont wanna know how to take care of it if something goes wrong.

I know for a fact artificial legs cause soreness,chafing and many other things. I would wanna know that before getting one for my child.

A CI is a much bigger issue than an artificial leg! I for one would consider myself negligent if I didnt find out any negative effects!
couldn't agree more.

I believe in cochlear implants. I have them. I only post on the part of alldeaf about hearing aids and cochlear implants. Lately all the postings have been negative. My cochlear implant is not negative. I knew all the negative before I set foot in the hostipal. I made my choice. I have discussed this with others and guess what - they also researched and made clear choices. Yes, I believe in a families right to implant a child.

Research and statments can be twisted and turned to fit our purpose.
On the flip side, today, all posts have been positive about CI. This is also bias. I am happy that her CI worked out for her.

All aspects - positive and negative - must be taken into account in order for anybody to make an educated decision.
Bingo. This is all im saying and stating my point in this thread.

Those parents who DO look at the positives and negatives of getting a CI still have to make the decision. Since I believe most decisions have turned out good and what can you say about the ones that "failed"? Sad, isn't it?
Id let the child decide himself when he's older. Adults can decide for themselves once they put their bias aside and read both good and bad CI experiences and make an informed choice. I will respect whatever choice they make.

I agree with you, Bear. It would be tantamount to child abuse if one ignores all the negative aspects of implanting a child.
Without getting into a lengthy debate, ill just say this is a difficult choice. I would never force CI on my child, but I won't tell other parents what to do except not to ignore the positive aspects to CI as well as the negative aspects.

I am total speechless when anyone choose to ignore any negative/disadvantages issues to consider positive only. *goose bumps* I MUST know about positive and negative before I make a decision. I also MUSt know how many % chance to positive and negative as well...
Everyone has the right to know this. No one should be getting mad when the negatives are being discussed or you won't be able to make an informed decision if you think CI is 100% positive success.

jag, the vertigo is similar to that of being drunk. In fact, it is basically the same thing. When you are intoxicated from alcohol, you become dizzy due to the change in fluid level within the inner ear. When you sober up, your fluid level returns to normal. With the cochlear implant surgery, the doctor cuts into the inner ear, thus changing the liquid level PERMANENTLY. So it is like you are constantly drunk. My husband says it "takes the fun out of drinking" lol

I understand that life is full of risks, but the doctor really downplayed the risks. When those risks were presented to my husband, it was like "these things happen so seldom, you really don't have to worry about it". I feel that was rather deceptive now that he has to "worry about it" for the rest of his life.
It is unfair to anyone to be fed only the positive aspects and not be properly informed of the risks. I am seeing this happen for many other elective surgeries, including lasik. They are surprised and upset to experience a complication. If they were properly informed, they would expect a % chance of complication and accept this.

yea,I'm aware of that ,however, I will take the risk
Since you are aware of the risks and you choose CI, you are making an informed choice and accepting both pros and cons to CI. Good luck, hope all goes well.

Yes I believe in people being notified of all the risks with the surgery, particularly if they are at higher risk for something than other candidates.

I think it can still be hard though if you are one of the small minority of people whose risks eventuate into reality. Even when people are notified of risks they are obviously hoping that it won't happen to them and don't focus too much on it. Every day when we hop into a car, we don't often reflect on the risk because we stop thinking that a serious accident might one day happen and so there is shock when it does occur, even though technically we always knew there was a risk. So perhaps counselling for clients when things don't work out as expected would be a good idea as well?
I believe everyone needs to be notified of all the risks. It's their right to be informed! I understand it's not fair a minority end up with a bad CI(or any surgery) outcome. I wish everyone would be a CI(or any surgery) success, but the reality unfortunately does not reflect this.

I'm sorry to hear about your husband. I think that having vertigo as bad as this is probably worse then being deaf. There are lots of things that are worse then deafness which people don't seem to take into account when they recomend CI's. To me it's rather like playing Russian Roulette and I'd rather not gamble with my health in this way.
This is why I have learned to accept my deafness and make do with what I can still hear with HAs. Yes I know im getting stem cells and yes I know there's no guarantee my hearing will improve. I will accept this and keep enjoying what sounds I can hear with HAs. There's more to life than understanding a high % of speech without lipreading. There's nothing wrong with being deaf and CI isn't mandatory to a happy, successful life. If you feel the need for CI, go ahead, I wish you luck in a good outcome.

No one knows how hard of decision it was for me to make for my children to get implanted. Even to last minute, I wanted to pull my son away from the surgeons hands.
Having my children implanted was the best decision I have made. I know it is not the best decision for all parents but for us it was.
Deciding on CI for yourself is a difficult decision. Deciding for your child is 10x more difficult. I am deciding on HAs if any of my future children are deaf. I strongly feel that HAs can do the job very well as it has for me. For those who would rather choose CI over HA, it's a very hard decision.

It is literally impossible to undergo CI surgery or consent to CI surgery for someone else without being informed of the risks involved. No surgeon would proceed without informed consent and no hosptial would allow it. If any of you serioiusly contend that you suffered a known CI complication of which you were not informed prior to surgery, you should contact an attorney right now and sue the hospital for performing the procedure without informed consent.

I don't know how it is possible to undergo CI surgery without being aware that vertigo is a possible complication. I was informed of this at least five times, along with statistics on the frequency of the complication. Temporary vertigo is common. I experienced it. Permanent vertigo is rare. I decided to take the risk. I daresay that, if I were to claim my surgeon lacked informed consent to perform my CI surgery, I would quickly be provided with a copy of the written document I signed listing in excruciating detail every negative CI consequence anyone had ever heard of or imagined and acknowledging that I'd been so informed.
We will be seeing a class action lawsuit where all those who weren't informed will be joining the lawsuit. This includes those who get good benefit from HAs and weren't informed that their speech score is way above FDA requirements. I see about 25% of people who would be scoring well on speech with properly fitted and programmed HAs still get CI. Some of them end up hearing worse with CI.

On another note, any surgery or procedure I get, I will definately ask for consent forms and a copy for me to keep. I will inform myself of all risks and blame no one for any complications because I know im rolling the dice and sometimes it ends up "snake eyes" bad luck happens in the real world and it can happen to anyone, including me.

How important is it to you to be able to hear and to communicate orally with those people, the vast majority of people, who don't sign, don't understand deafness and have little or no experience with deafness? If it is not important to you, then there is no reason at all for you to run the risks of CI surgery. You will always have a place in the deaf community. Personally, as a late-deafened adult deep into a career that absolutely requires me to communicate orally, with a family depending on me to earn a living and support them, for me the CI decision was a no-brainer. I would, without hesitation, make the same decision for a child in my care who is too young to make the decision. If I were the deaf parent of a deaf child, I might very well make a different decision.
There are many people who get CI out of being pressured or buying into the hype but realise they don't actually need CI. I am able to communicate orally with others, with or without HAs. I would still like to hear better, but if this doesn't work out, ill accept this. I can't speak for you except to say that you should write a list of pros, cons and reasons why you want/need CI and decide carefully. Good luck!

As I remember recalling someone created a thread about a child who had a cochlear implant and was paralysis from the cause of repeating surgeries, some cochlear implanter's on this board of alldeaf and some hearing parents did not believe her story. I'm disappointing because it seems like some does not want to hear the negatives this is exactly one reason why I created this thread. There is no ONE side positive outcome for all those who received or planning on getting a cochlear implant. It's very important to look at both sides of the pro and cons of cochlear implants the positives and negatives aspects.
Im in agreement and am seeing people on my own thread not believe anything negetive I post about CI. This just shows their extreme bias and them being unable to make an informed decision.

because some negatives aspects are not being reported or share, it's more like they just want to show the good in cochlear implants not the bad.
This is exactly the feeling I am getting. Some of you used to be against CI and saw only the negatives, now you are very pro CI and see only the positives. I see both sides of the fence!

-------------------------------------------------

Read the rest of the thread, there's alot of good points being made. Feel free to discuss them here and ask questions. Keep an open mind and see both sides.
 
#40
I want you guys to know this: Due to privacy rights for patients, doctors do not really disclose the failures of any procedure. This is why we do not hear about it as often as they do actually happen.

I've heard failure rates for CI was in a high % neighborhood. I will not state what the % is primarily because first: I am not a doctor, second: I do not have a good source, third: I do not want to influence anyones decision.

I know of a model who got a paralysis of the face after having the operation.
I also know of a lady who was an interpreter getting a CI (I dont know why, she could have used HA's but..) because she loved her occupation. She said it was the worst thing she has ever done in her life. The sounds is not really what you hear as a hearing person.

Just saying that the doctors will glamorize the implantation (for obvious reasons) and not tell you the actual failure rates, just because the information is not handy.

When I had my daughter first tested for her hearing loss, I went to the Denver University medical center to have it done. Guess what was plastered all over the walls - CI posters. No hearing aids, no other means of accommodations, etc. Personally, being a Deaf individual, I found that audist.

That is all I have to say. Just wanted to have that small piece of input.