What about the negatives aspects on CI? Should it be notify?

jillio said:
Twenty one years of working with and being involved with both deaf students and their parents. Direct involvement witht he deaf community. Interviews and research. And personal observation.
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But to make a statement of the majority of hearing parents is not realistic. That is it from being involved with families and working with them in your part of the country. I'm in a different part of the country and I can also make a statement about my part of the country.

I have around 20 years of experience working with students with disabilities, I read research, I wrote a research paper - I'm not qualified to make a statement like that. I would never place a statement like that out.

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.
 
Yes, the parents should be notified of complications. They should know that no guarantees if their children's CI will be success. I am interested in reading both pros and cons of getting CI.

Personally, I don't plan on getting CI for myself because I already knew that CI would not give me any benefits anyway.

Also, doctors, audiologists, and AVTs should give parents more options including sign language.
 
All aspects - positive and negative - must be taken into account in order for anybody to make an educated decision.
 
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?
 
vallee said:
But to make a statement of the majority of hearing parents is not realistic. That is it from being involved with families and working with them in your part of the country. I'm in a different part of the country and I can also make a statement about my part of the country.

I have around 20 years of experience working with students with disabilities, I read research, I wrote a research paper - I'm not qualified to make a statement like that. I would never place a statement like that out.

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.

First of all, I said the parents in my experience. That qualifies my statement right there.

Second of all, I am familiar with the attitudes and philosophies of the educational system in the area in which you reside. My own son was diagnosed at the very center which does your follow up, and my husband attended the university associated with the hospital in which your surgery was performed. Bill Wilkerson was the very place that advised tthat I should not use sign with my son as it would interfere with his ability to develop spoken language....extremely misguided and innacurate advise. Bill Wilkerson has always been an oral institution, and Vanderbilt Hospital, as a teaching hospital, has always been involved in experiemntal procedure. The educational system of middle TN is very orally based. I took a school system to due process in the area in order to receive a terp for my son when he was in the first grade. My first contact with Def Culture was at the League for the Deaf and HOH behind Bill Wilkerson, and it is there that I gained a perspective of deafness from those who live with it on a daily basis, and where I also learned ASL from native signers, as did my son.

I moved from that area in order for my son to attend a deaf school that is rated as one of the best in the nation. The area you are in is very oralist in philosophy.

Additionally, my experience is not limited to one geographic area, as you assumed.

Finally, my disagreement was not with your choice of CI, but to the fact that you stated that you chose to ignore the negative information regarding CI, and that you did not believe the con side of the issue would be of value to parents considering CI for their children. The topic here is whether parents are being informed of all of the issues in order to make informed choice for their children, and whether adult implantees are being informed of all of the issues prior to making their decision for themself.
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vallee said:
If I chose to live my life in negative then I will never achieve anything. Maybe the negative side is not that negative - stactic, batteries going out, practicing. Maybe CI users are telling the truth. I love mine, I enjoy hearing. I would do it over again.

I have not experienced anything I would think of as negative. It works for me. I'm not sitting at home thinking of processor or implant not working.

Honestly, I researched made my decision.


We judge parents for their decisions to implant, how many of us really understand and respect them. We don't know what they did for research, what they went through day in and day out. How they are helping there children. Instead we get this I have seen, I have heard, I don't like. Well that is not what parents or CI wears need. Don't judge unless we have walked a mile in their shoes.
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I put myself in the deaf children's shoes not the parents' shoes. My primary concern are those children's needs, not the parents. That is from my personal and professional experiences of working with parents who admitted that they did not know what they were doing when they first found out that their children are deaf. They admitted that they had the view that ASL would limit them and by making them as "normal" as they could was the best way only to turn to ASL and the Deaf community later. Many of them have expressed regrets for the placements of their children in oral-only programs. My mom was one of those parents.
 
shel90 said:
I put myself in the deaf children's shoes not the parents' shoes. My primary concern are those children's needs, not the parents. That is from my personal and professional experiences of working with parents who admitted that they did not know what they were doing when they first found out that their children are deaf. They admitted that they had the view that ASL would limit them and by making them as "normal" as they could was the best way only to turn to ASL and the Deaf community later. Many of them have expressed regrets for the placements of their children in oral-only programs. My mom was one of those parents.
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Exactly. And had those parents been provided with all of the information available, and accurate information, as well, perhaps their decision would have been different fromthe outset. As it is, they were given only partial information, and id not make an informed decision. As a consequence, they made a decision based on innacurate information and thier child's development suffered.
 
Bear said:
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.
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I agree with you, Bear. It would be tantamount to child abuse if one ignores all the negative aspects of implanting a child.
 
Bear said:
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!

*smh*
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*nodding agreement*

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...


Eve, I am sorry to hear about your husband.
 
shel90 said:
I put myself in the deaf children's shoes not the parents' shoes. My primary concern are those children's needs, not the parents. That is from my personal and professional experiences of working with parents who admitted that they did not know what they were doing when they first found out that their children are deaf. They admitted that they had the view that ASL would limit them and by making them as "normal" as they could was the best way only to turn to ASL and the Deaf community later. Many of them have expressed regrets for the placements of their children in oral-only programs. My mom was one of those parents.
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:gpost: ditto...
 
Eve said:
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.
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How odd. Vertico was one of the side effects that was given to me prior to me making the decision. I knew I could have problems with balance. For me that would have meant giving up riding my own motorcycle. I took that risk because I wanted to hear more, I could always get a trike or ride with the hubby. Speaking of hubby, he has vertigo attacks and he has no implants. He hears normally. His started last spring around his 50th bd. Anyone can get them at any age and they really don't know exactly why, they do know that it's more common the older we get. In his case they think it was probably bouncing across the plowed fields when getting ready to plant crops. That's life, it's full of risks. Some choose to take them others choose not to.
 
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.
 
Eve said:
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.
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I am sorry to hear about your husband's failed CI surgery..it seems to me that that was a surgeon failure than the CI itself .. just my opinion
 
highlands said:
I am sorry to hear about your husband's failed CI surgery..it seems to me that that was a surgeon failure than the CI itself .. just my opinion
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And that is something else that people need to be aware of when making a decison. Surgeons are human, and they are capable of making mistakes like any other human. No matter how skilled, something could happen that could cause a slight miscalulation and result in damage being done.
 
jillio said:
And that is something else that people need to be aware of when making a decison. Surgeons are human, and they are capable of making mistakes like any other human. No matter how skilled, something could happen that could cause a slight miscalulation and result in damage being done.
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yea,I'm aware of that :) ,however, I will take the risk :D
 
Eve said:
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.
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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.
 
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?
 
R2D2 said:
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?
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I'm a believer in both pre and post counseling for candidates, and for parents of candidates.
 
Eve said:
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.
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I am sorry about your husband's situation. Isnt there anything else he can do to improve his condition?
 
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