Some people are so pro-CI they are biased! I see both sides!

I posted on a deaf forum(link) of someone who experienced a negative CI result.
(Note: if you are very pro-CI and refuse to hear both sides to CI, including any bad results, don't read this blog.) Update: Some of you went ahead and read this blog anyway and decided to insult me. I did warn you that this post would anger those who are biased towards CI.

She got CI several years ago. It helped somewhat for environmental sounds but no improvement in speech. Her CI started to malfunction after 5 years with the electrodes going bad. This caused headaches and electric shocks inside her head. She doesn't want another CI and realizes she can be a vet without being able to hear. She stands correct that people should look at both sides of CI. I always saw both sides and decided CI isn't for me because I don't want to give up my residual hearing like she did. For those who have gotten or plan to get CI, good luck with your choice.

-------------------her story below---------------------

Actually, no. I became profoundly deaf at 4, hearing aides worked for me for a while, I could, like you, hear airplanes and cars, and even tell when someone was talking, and sometimes I could pick up a little bit of what they were saying. I spoke fairly well, and then I got a CI. at first, it worked, not perfectly, but i could hear more things, cats meowing, birds tweeting, and that was wonderful, then i started to realize... my speech hadn't gotten better (and yes, i went to speech therapy and CI therapy) my hearing hadnt improved past that point, i still struggled to understand what people were saying, i couldn't tell the difference between a male's voice or a female's voice, i could only understand simple words like my name, no, mom, dad, hello, things like that without looking at the person's lips, and etc. about 5 years after i got the CI, i stopped wearing it, and I'm glad I did. I had started to get frequent headaches while wearing it, and I would get electrical charges more frequently than normal. People have so many positive things to say about CI's, but you should look @ both sides. I, also, want to be a vet, and it's possible even without a CI.

-----------------The responses I got?-------------------
Note that the responses are copyright by the respective authors which were posted on a deaf forum(link) I had kept their biased pro-CI responses anonymous so others won't insult them. But if they insist on making their responses known, fine then. Freedom of speech gives me the right to disagree with what other people say. If you can't handle anyone disagreeing with you, then don't read/respond anything you don't want to hear about.

1. Please just quit it. I can't get one, so it does not affect me, but it makes a lot of people here sad and angry.(sorry, but in the real world, no surgery has a 100% chance of success)

2. it's just getting really old at your negativity towards cochlear implants(you only see one side to CI: the positives)

3. To me it just another Hearsay post.(says the biased pro-CI guy)

4. The only thing your ill-informed assessment of "CI failure" -- based on some uncited, out-of-context paragraph about someone's experience (either real or imagined) -- exposes is your own motivation to tear down options other than that which you (or your parents) have chosen for your situation.(it's real and the only motivation is to eliminate one sided bias.)

5. Oh you have all the right in the world...but you rarely post ANYTHING good about CI...and we get that YOU do not like CI but for others who are maybe looking into it and are new users you paint a very bad picture for them, and that's not very fair is it.(I have posted alot of good about CI in my blog)

6. I am sorry to hear she have a bad experience with CI, but I don't see it as a reason to post it as a case why one should go against CIs. It's completely one=sided burdened on the user since it was malfunctioning.(I never said anything about going against CI)

7. Then her CI malfunctioned and she chose not to fix it. Totally her right, and decison.(she did not gain speech benefit anyway from the start)

8. Exactly. I don't know that I would consider that a failure story. To me a failure story is when there is zero benefit.(for her, it's a failure. For others it's a success)

9. hum bug. deafdude, seriously, get a life and quit bringing in non-sourced garbage to these boards. geez!(I have the right to eliminate one sided CI bias)

10. He need to stop being negative toward CI and bring up the threads. He couldn't stop it.(ironic since you used to be negative to CI. Now you are biased to the extreme in the opposite direction. I am unbiased)

11. 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.(exactly!)

12. 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.(if she wasn't informed of the risks, she can sue. If she was informed, she made her own choice and accepted the risks.)

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[QUOTE]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.[/QUOTE]

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.

[QUOTE]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.[/QUOTE]

This is what I feel is going on. You guys are getting mad and ignoring the negative im posting about.

[QUOTE]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.[/QUOTE]

This is why I am supplying the necessary information.

[QUOTE]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![/QUOTE]

couldn't agree more.

[QUOTE]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.[/QUOTE]

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.

[QUOTE]All aspects - positive and negative - must be taken into account in order for anybody to make an educated decision.[/QUOTE]

Bingo. This is all im saying and stating my point in this thread.

[QUOTE]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?[/QUOTE]

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.

[QUOTE]I agree with you, Bear. It would be tantamount to child abuse if one ignores all the negative aspects of implanting a child.[/QUOTE]

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 [B]as well as[/B] the negative aspects.

[QUOTE]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...[/QUOTE]

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.

[QUOTE]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.[/QUOTE]

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.

[QUOTE]yea,I'm aware of that ,however, I will take the risk[/QUOTE]

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.

[QUOTE]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?[/QUOTE]

I believe everyone needs to be notified of all the risks. It's their [B]right[/B] 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 [B]reality[/B] unfortunately does not reflect this.

[QUOTE]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.[/QUOTE]

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.

[QUOTE]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.[/QUOTE]

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.

[QUOTE]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.[/QUOTE]

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 [B]inform[/B] myself of all risks and blame no one for any complications because I know im [B]rolling the dice [/B] and sometimes it ends up "snake eyes" bad luck happens in the real world and it can happen to anyone, including me.

[QUOTE]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.[/QUOTE]

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!

[QUOTE]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.[/QUOTE]

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.

[QUOTE]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.[/QUOTE]

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!

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Feel free to discuss/comment them here and ask questions. Keep an open mind and see both sides to CI like I do. Note: If you want to discuss stem cells, please post your comments here