Parants of CI children.

[Buffalo]

What CI brand did she have? Was it from Cochlear? If not, the NRT wouldn't have worked since the NRT is exclusive to Cochlear brand CIs. As far as I know, AB does not offer NRT unless faire_jour can correct me.

MomToDeafChild's daughter has Advanced Bionics and wears the Harmony BTE. I don't think I have heard of Harmony. In this case, she said the CI wasn't working so they took it out. When they test it and they found it working.

If it is from Cochlear and they did the NRT and found it working, What would they do? Leave it there even the very young kid is not getting any sound? That is my point.

 

[Hear Again]

MomToDeafChild's daughter has Advanced Bionics and wears the Harmony BTE. I don't think I have heard of Harmony. In this case, she said the CI wasn't working so they took it out. When they test it and they found it working.

If it is from Cochlear and they did the NRT and found it working, What would they do? Leave it there even the very young kid is not getting any sound? That is my point.

Buffalo,

I am not a CI audi, so I cannot answer your question.

 

[Hear Again]

Buffalo,

So just because there's a risk of CI failure a child shouldn't be implanted? Life is full of risks. I could walk across the street tomorrow and get hit by a car. Does that mean I shouldn't leave my house? No, of course not. The same is true with CIs. There are always risks and it is up to each of us to determine how much of that we are willing to accept. I'm very sorry about what MomToDeafChild experienced, but am glad her daughter's second implantation was a success.

 

[Hear Again]

I may be wrong, but I don't think AB offers the NRT for the HiResolution 90K.

 

[Buffalo]

Buffalo,

So just because there's a risk of CI failure a child shouldn't be implanted? Life is full of risks. I could walk across the street tomorrow and get hit by a car. Does that mean I shouldn't leave my house? No, of course not. The same is true with CIs. There are always risks and it is up to each of us to determine how much of that we are willing to accept. I'm very sorry about what MomToDeafChild experienced, but am glad her daughter's second implantation was a success.

In China, there are some people who would undergo surgery to make themselves several inches taller. They were doing this to gain more privileges. Isn't getting CI same thing? Gaining more privileges (as in avoiding discrimination).

 

[Hear Again]

In China, there are some people who would undergo surgery to make themselves several inches taller. They were doing this to gain more privileges. Isn't getting CI same thing? Gaining more privileges (as in avoiding discrimination).

If a child or adult can receive the benefits a CI provides, why shouldn't they?

 

[jillio]

I understand your point. When I visited my CI audiologist last November, she said they experienced about a 96% success rate, although when doing an in-person survey, only about 90% said they experienced a benefit from a CI. What was key about that was she said from an audiogram standpoint, the success rate was about 96%, it was just that the difference between the 90% that said they experienced a benefit from a CI and the 96% on an audiogram was those 6% didn't feel like they benefited, even if their audiogram showed an improvement. My point is that for some, the CI felt non-functional, or non-improvement, even though there was. I'm not sure how that fits in here, but just thought I'd throw that in.

Exactly. That's why I think it is important to look at the numbers as related to perceived benefit of the user. Is a devise truly "successful" if the person it was intended to provide benefit for perceives no benefit? It has not fulfilled the intended purpose, and therefore, cannot be determined to be successful.

Its like if I treat a client, and I assist them in making changes in their live, and from my perspective, those changes should make their life better. But they feel those changes have not improved their life. Was my treatment successful? No, it wasn't.

 

[jillio]

But that is only one company to be fair. You would need to average in all the CI companies to get the overall average.

Agreed. That is only one company. But that would reduce the overall rate of all companies, as well. If one has an 80% rate, the rest would have to have at least a 100% rate to achieve an overall of 95.5%. That is a bit unrealistic.

 

[jillio]

If a child or adult can receive the benefits a CI provides, why shouldn't they?

I don't think anyone is saying they shouldn't. What we are saying is that they should be given accurrate information before deciding if they want to take those risks.

 

[Hear Again]

I don't think anyone is saying they shouldn't. What we are saying is that they should be given accurrate information before deciding if they want to take those risks.

I think it's equally important for parents to fully educate themselves. I've seen some parents who dive right into the decision making process and consider CIs without doing any research. That can be just as devastating to a parent as an audi or CI surgeon who does not provide them with everything they need to know in order to make an informed choice.

 

[rockdrummer]

I think it's equally important for parents to fully educate themselves. I've seen some parents who dive right into the decision making process and consider CIs without doing any research. That can be just as devastating to a parent as an audi or CI surgeon who does not provide them with everything they need to know in order to make an informed choice.

This is very true. In fact in my state they passed resolutions that provide for the inclusion of such information which unfortunately were not passed until recently. Everybody has an agenda and usually it's motivated by the allmighty dollar instead of the best interest of the individuals.

 

[rockdrummer]

Exactly. That's why I think it is important to look at the numbers as related to perceived benefit of the user. Is a devise truly "successful" if the person it was intended to provide benefit for perceives no benefit? It has not fulfilled the intended purpose, and therefore, cannot be determined to be successful.

Its like if I treat a client, and I assist them in making changes in their live, and from my perspective, those changes should make their life better. But they feel those changes have not improved their life. Was my treatment successful? No, it wasn't.

Exactly. We had this discussion in another thread. What is considered a success varies by perspective. The CI manufacturer considers it a success if the processor and implant communicate with eachother. The surgeon considers it a success if the device was implanted with no complications. Each of those cases can be successful but the patient may gain no benefit connecting to the sounds around them or being able to make use of those sounds.

 

[Hear Again]

This is very true. In fact in my state they passed resolutions that provide for the inclusion of such information which unfortunately were not passed until recently. Everybody has an agenda and usually it's motivated by the allmighty dollar instead of the best interest of the individuals.

I'm glad your state passed that resolution. I may be a CI user, but that doesn't mean I don't agree with those who say CI companies try and promote CIs as being a form of technology that will greatly improve one's life. I'll be the first to admit that I fell for this as well. In fact, when I saw my audi this week, I told her how I was led to believe I would hear so many wonderful sounds like birds singing, crickets and waves crashing on the beach. When 4 years passed and I couldn't hear these sounds as well as I thought I should, I was very disappointed. I even told my audi that until 6 electrodes were turned off on each CI, I didn't really like how I was hearing and wasn't completely satisfied with my CIs. I don't blame my former audi for this because she was excellent when it came to mappings and did everything possible to help. As my current audi says, it just came down to deactivating several electrodes in order to give me the best hearing possible. I'm now *very* pleased with my CIs and wouldn't trade them for the world. The only regret I have is placing too much faith in the personal experiences of others. Instead of focusing on that, I should have put more faith in research studies since they are consistent in nature and have proof to substantiate their conclusions.

 

[rockdrummer]

............. The only regret I have is placing too much faith in the personal experiences of others. Instead of focusing on that, I should have put more faith in research studies since they are consistent in nature and have proof to substantiate their conclusions.

I agree. If there were accurate studies that said for example; 90% of patients with implants were successful connecting to the sounds around them and are able to make use of them I would tend to go that route. If on the other hand the studies proved that result was only 15% I would elect to take a pass. The problem is obtaining accurate un-bias information.

 

[Hear Again]

I agree. If there were accurate studies that said for example; 90% of patients with implants were successful connecting to the sounds around them and are able to make use of them I would tend to go that route. If on the other hand the studies proved that result was only 15% I would elect to take a pass. The problem is obtaining accurate un-bias information.

Exactly. I also agree that if research studies indicated only a 15% rate of improvement, I would have elected to continue wearing hearing aids in order to hear environmental sounds. Since that percentage is much higher, I chose to do otherwise and am glad I did.

 

[C-NICE]

Similar Situation With HA's

I do remember a few years back HA companies were making unrealistic claims about some of the HA's they were marketing and the FCC made them stop. The thing about CI's & HA's are that the results vary by individual. Some may have very good results while others may just receive a limited improvement at best.

 

[Hear Again]

The thing about CI's & HA's are that the results vary by individual. Some may have very good results while others may just receive a limited improvement at best.

This is exactly what CI companies, audis and surgeons need to emphasize. My audi and surgeon emphasized this, but I made the mistake of relying on the personal experiences of others to color my expectations. Because of that, I ended up disappointed. I'm just glad my audi and I were able to pinpoint the real cause of my difficulty hearing so we could correct it and I could receive the best maps possible.

 

[faire_jour]

The contradiction is obvious. Is it not the first line of therapy? Isn't what you have sought for your own child?

Yes, I have chosen to do a modified version of AV therapy. That doesn't mean that every parent does or that is the "first line of therapy", I don't even know what that is supposed to mean.

 

[faire_jour]

What CI brand did she have? Was it from Cochlear? If not, the NRT wouldn't have worked since the NRT is exclusive to Cochlear brand CIs. As far as I know, AB does not offer NRT unless faire_jour can correct me.

We have NRI's. It is the same thing.

But the child reported that the implant wasn't working. It HAD worked and then stopped. It happens. Then you need to re-implant.

 

[Hear Again]

We have NRI's. It is the same thing.

faire_jour. I thought AB probably had something similar, but didn't want to say for sure because I wasn't certain.