To Implant or Not to Implant? That is my question . . .

[jillio]

Why do you believe that implant teams are specially more or less biased than other doctors? Especially when they don't make a lot of money from surgeries and with some surgeries they lose money?

Even given the loss on some surgeries, the overall effect is one of profit. And receiving a little money from surgery is better than receiving none from not doing the surgery. Plus, there is the natural bias inherent in the medicalized view of deafness as disease to be treated with medical intervention. That is present more in the surgical specialties and the ENT specialties than in other sub-specialties of medicine. They are taught in medical school to adopt that attitude. One who does implant surgery is just naturally inclined to support and advocate for that which he/she does in support and justification of their profession.

 

[R2D2]

"Cure" can be implied, as in "This will allow your child to fully integrate into the hearing world and function as a hearing child." To the hearing parents of a recently diagnosed deaf child, that translates to "cure".

While I tend to agree that a statement like that is rather positive given that results can be variable from person to person, I don't think it amounts to saying that the CI is a cure. A "cure" implies no presence of deafness at all.

I would hope that most doctors and audiologists do not make such promises to parents though. Perhaps some of the parents here could indicate if anyone told them that their child definitely would get those benefits and be exactly like hearing children with absolutely no need for accommodations?

 

[R2D2]

Even given the loss on some surgeries, the overall effect is one of profit. And receiving a little money from surgery is better than receiving none from not doing the surgery. Plus, there is the natural bias inherent in the medicalized view of deafness as disease to be treated with medical intervention. That is present more in the surgical specialties and the ENT specialties than in other sub-specialties of medicine. They are taught in medical school to adopt that attitude. One who does implant surgery is just naturally inclined to support and advocate for that which he/she does in support and justification of their profession.

So if they do make some profit, how does that set them apart from other members of the medical community who also make (often larger) profits and who also have a medicalised viewpoint toward any part of the body that does not function in the way it's designed to do?

 

[jillio]

While I tend to agree that a statement like that is rather positive given that results can be variable from person to person, I don't think it amounts to saying that the CI is a cure. A "cure" implies no presence of deafness at all.

I would hope that most doctors and audiologists do not make such promises to parents though. Perhaps some of the parents here could indicate if anyone told them that their child definitely would get those benefits and be exactly like hearing children with absolutely no need for accommodations?

Quite often it is not what is said to these parents, but the way in which the inforamtion is presented. Combine that with a parent who is confused and has neverhad any experience with deafness and wants more than anything to do whatever they can to make their child more "normal" and we have a dangerous combination. Factor in the guilt that most hearing parents feel upon diagnosis, and their inclination is to do whatever they can to mediate the "affliction" that they feel in some way responsible for, and we end up with unclear thinking and faulty logic.

 

[jillio]

So if they do make some profit, how does that set them apart from other members of the medical community who also make (often larger) profits and who also have a medicalised viewpoint toward any part of the body that does not function in the way it's designed to do?

It doesn't set them apart. All the subspecialties contain bias to some degree. The difference would be the lasting effects. Implantation of a pacemaker/defibrilator does not result in language deprivation because the user's parents have misunderstood the limits of the devise.

PS....I finally responded to your question to me in the magic pill thread. Sorry for the delay. I somehow skipped over it and just read it again a bit ago.

 

[R2D2]

Quite often it is not what is said to these parents, but the way in which the inforamtion is presented. Combine that with a parent who is confused and has neverhad any experience with deafness and wants more than anything to do whatever they can to make their child more "normal" and we have a dangerous combination. Factor in the guilt that most hearing parents feel upon diagnosis, and their inclination is to do whatever they can to mediate the "affliction" that they feel in some way responsible for, and we end up with unclear thinking and faulty logic.

Well, I certainly would like to see a wider education process, such as in Sweden where parents are required to try and understand the viewpoints of those in the deaf community who are opposed to implants so that they get a more rounded viewpoint. But then Sweden apparently has one of the highest CI rates in the the world, so I understand.

What I see time and time again in posts is that parents see the CI as giving their children more choices and opportunities in life. I don't think those are bad reasons as long as they understand that the process only starts with the CI and that their children will still need specialised help and accommodations as they grow up.

 

[R2D2]

It doesn't set them apart. All the subspecialties contain bias to some degree. The difference would be the lasting effects. Implantation of a pacemaker/defibrilator does not result in language deprivation because the user's parents have misunderstood the limits of the devise.

The CI itself doesn't result in language deprivation though. There are other factors such as lack of support, lack of funding, unrealistic expectations, inappropriate communication strategies for the individual child, parents who don't care etc etc.

It's not automatic that had the same children not received their CIs, they would not be language deprived. So the CI cannot be seen as the cause of language deprivation. I'd be willing to wager that many of them probably would be struggling with hearing aids not powerful enough to meet their needs and only getting sign language input later on.

If the parents are going to be very determined for the child to be a part of their world, then I'd rather it was with a CI than with hearing aids as the stress placed on the child being functional HOH vs profoundly deaf with hearing aids is less extreme.

 

[jillio]

Well, I certainly would like to see a wider education process, such as in Sweden where parents are required to try and understand the viewpoints of those in the deaf community who are opposed to implants so that they get a more rounded viewpoint. But then Sweden apparently has one of the highest CI rates in the the world, so I understand.

What I see time and time again in posts is that parents see the CI as giving their children more choices and opportunities in life. I don't think those are bad reasons as long as they understand that the process only starts with the CI and that their children will still need specialised help and accommodations as they grow up.

Absolutely. Sweden has a wonderful education process, and a manner of instituting policy that guarantees that parents of newly diagnosed children get the necessary information and assistance they need. I would love to see the U.S. adopt the same sort of policy. Unfortunately, inthe U.S., the process of getting infor and assistance to parents is still very disjointed and uncoordinated.

I agree that the attitude of giving a child more opportunity is not in and of itself harmful...it is the fact that the process often stops there. When deficits begin to show up in these children, those deficits are often ignored for so long that problems are magnified and made more difficult to remedy. Often, the effects are life long. It6 has been my experience, and this is also supported by numerous studies, that the oral approach alone in conjuction with the CI has reversed trends in literacy and language competency that were being overcome by the use of sign and speech combined. The CI is correlated with an increase in the choice of oral only for hearing parents of deaf children, and as a result, we are seeing an increase in problems for these children that is very distressing.

 

[jillio]

The CI itself doesn't result in language deprivation though. There are other factors such as lack of support, lack of funding, unrealistic expectations, inappropriate communication strategies for the individual child, parents who don't care etc etc.

It's not automatic that had the same children not received their CIs, they would not be language deprived. So the CI cannot be seen as the cause of language deprivation. I'd be willing to wager that many of them probably would be struggling with hearing aids not powerful enough to meet their needs and only getting sign language input later on.

If the parents are going to be very determined for the child to be a part of their world, then I'd rather it was with a CI than with hearing aids as the stress placed on the child being functional HOH vs profoundly deaf with hearing aids is less extreme.

No, the CI in and of itself does not cause language deprivation, but there is a correlation between implantation and oral only. And oral only has been proven to result in language deprivation and all of its attendant difficulties; difficulties that are quite often life long. I have stated numerous times that it is not the CI in and of itself that I object to. It is the oral only method, and the fact remains that more parents of CI children opt for this method than children who are simply aided with HA. If policy such as that adopted by Sweden were instituted on a widespread basis, much of the negative effect could be mediated. And the use of sign along with AVT and CI does not preclude a child from participating in their parent's world. But it does open a world to the child that is not available with an oral only environment. Preimplantation counseling would help tremendously in making sure that these parents are making decisions from a realistic perspective, and thus enable them to make more benficial decisions for their children. Implementaion of such has to begin with referral from the physicians responsible for performing the surgery. If you will reread my post, I believe you will find that in my comparison, I stated that misunderstanding of the limits of the devise was the variable involved.

 

[jillio]

My time to edit my last post has lapsed, but I did want to add, R2D2, that I very much appreciate that you are not quckly jumping to the assumption that I am anti CI and pro sign only, for nothing oculd be further from the truth. Unfortunately, because there is a strong positive correlation between CI and the choice of an oral only environment, too many quickly assume that because I do have an objection to the use of an oral only philosophy for any deaf child, I naturally object to implantation as well. My objections to Ci are not related to the devise, but to the lack of proper education for parents prior to the surgery, and the resulting increase in children being placed in oral only educational and social environments that serve to turn a disability into a handicap.

It is only through reasonable discussion and sharing of ideas that any policy change will ever be instituted. And I very much appreciate your willingness to engage in such. As well as the willingness of others--both CI users and non CI users==to do the same. The issue here is the welfare and education of deaf children.

 

[highlands]

Really, it sucks. Reason I was not qualify for it because I do not have any cochlear hair left and nerves was kind of gone. Oh well. Hope u get CI someday.

Thanks . I am sorry to hear that you can't get a CI.. I hope science can find new ways of supporting the deaf/hoh .. such as stem cells.

 

[shel90]

Just curious...am I the only one who has no desire to hear better? Am I weird for not being interested in improving my hearing capabilities? I couldnt care less if scientists come up with better technology or cure for improving hearing losses.

I guess maybe I feel that way cuz I am doing fine in both worlds now?

 

[highlands]

Just curious...am I the only one who has no desire to hear better? Am I weird for not being interested in improving my hearing capabilities? I couldnt care less if scientists come up with better technology or cure for improving hearing losses.

I guess maybe I feel that way cuz I am doing fine in both worlds now?

:P no I don't think you are the only one and it is an individual choice depending on your 'background' . I am late deafened and I once had good hearing so I wish to get back some of my 'lost' world and this doesn't mean that I dislike deafness.. I like both worlds and want to function in both worlds ,as well

 

[Hear Again]

Shel,

No, I don't think so. There's nothing wrong with being comfortable with your deafnesss. I feel the same way about my blindness. In fact, if there were a surgical procedure available that would allow me to see, I'd turn it down because I'm quite happy and content with my life as a blind person. Besides, there would be so many things I'd have to learn such as how to read print, recognize everyday objects, etc. that I think I'd be overwhelmed. Blindness is something I've been used to my entire life and is a part of who I am. I don't see (no pun intended) any reason to change that.

 

[R2D2]

Just curious...am I the only one who has no desire to hear better? Am I weird for not being interested in improving my hearing capabilities? I couldnt care less if scientists come up with better technology or cure for improving hearing losses.

I guess maybe I feel that way cuz I am doing fine in both worlds now?

Maybe the only one in the "hearing aids and cochlear implants forum" for obvious reasons but certainly not the only one on AD! I've seen plenty of people who feel as you do but they don't post that much in here but rather in other sub forums. We are all different and have different preferences, just like any other group I love to hear sounds, you are more neutral about it. So what? But we're still both deaf.

 

[jillio]

Just curious...am I the only one who has no desire to hear better? Am I weird for not being interested in improving my hearing capabilities? I couldnt care less if scientists come up with better technology or cure for improving hearing losses.

I guess maybe I feel that way cuz I am doing fine in both worlds now?

Probably so. I know my son doesn't feel the need to improve hishearing because he is doing great and doesn't see how it could improve his life.

 

[jillio]

Shel,

No, I don't think so. There's nothing wrong with being comfortable with your deafnesss. I feel the same way about my blindness. In fact, if there were a surgical procedure available that would allow me to see, I'd turn it down because I'm quite happy and content with my life as a blind person. Besides, there would be so many things I'd have to learn such as how to read print, recognize everyday objects, etc. that I think I'd be overwhelmed. Blindness is something I've been used to my entire life and is a part of who I am. I don't see (no pun intended) any reason to change that.

When I went to college for my bachelor's degree, I had a blind roommate. I asked her once if there was a way for her to become sighted, would she take advantage of it. She said pretty much the same thing you did. I think her exact response was, if I became sighted, I'd walk right into a wall because I wouldn't know it was solid just from seeing it.

 

[Boult]

Yea. Too sad bec Freedom is the best one. I thought it helps me to hear the words better. Turn out it wasn't. The only thing I heard is the sound from around me. I trained myself to hear the words. It doesn't help. The 3G does. Oh well.

Sound like that it has something to do with the features of Freedom, SmartSound Technology; Cochlear Americas: Nucleus Freedom with SmartSound

 

[RedheadGrrl]

Sound like that it has something to do with the features of Freedom, SmartSound Technology; Cochlear Americas: Nucleus Freedom with SmartSound

not just that! What abt the words that I already heard with 3G? With Freedom, I don't hear any words that I already trained. Thats why it doesnt work for me.

 

[jag]

Really, it sucks. Reason I was not qualify for it because I do not have any cochlear hair left and nerves was kind of gone. Oh well. Hope u get CI someday.

I assume that these problems were found during the workup to see if you were an acceptable canidate for a CI? The audiologist can tell you you qualify for a CI by the testing, the audiologist cannot make the final determination because the audiologist doesn't have the results from other testing (like CT/MRI) to give the final determination, that is given by the ENT/surgeon. You audiologist did not lie to you, based on your hearing loss alone you did qualify, BUT physical factors do need to be addressed to.