I'm Getting a CI!!!

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posts from hell said:
Fine, if you know your stuff, you wouldn't have a problem showing it is 1000:1 instead of being all defensive?

BTW - just a food for thought, I can pull out easily 20+ people here with CI difficulties - I don't see 20,000 people praising their own CI's.
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Not on this message board... But try cicircle for a week and lurk there... You might get close to the other number....
 
Let's say the failure rate of CIs is 1 in 10. Crazy figure, but since we're pulling them out of hats rather than research, we can do it.

That means that your logic that our conversations about our own children need to reflect the actual number of successes / failures in the world requires that for every 10 positive posts someone makes about CIs, there needs to be 1 that mentions a negative.

And so, now we need some imaginary figure of 'failure' for other topics on AD. So every XX times I mention my daughter's bi-bi school positively -- which I admit, I do a whole lot, because I love it -- I need to throw in a disclaimer that XX % of kids at bi-bi schools do not achieve the same successful results.

Isn't this requirement that we are not objective unless we temper anything positive we say with negatives a bit unreasonable?
 
Cloggy said:
Amazing.. How a post is pulled out of context...
I recall saying that my daughter hears a little bit would be "downplaying reality".
But what the hack... Go ahead and create your own reality..
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:roll:
 
Cloggy said:
Not on this message board... But try cicircle for a week and lurk there... You might get close to the other number....
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GrendelQ said:
Let's say the failure rate of CIs is 1 in 10. Crazy figure, but since we're pulling them out of hats rather than research, we can do it.

That means that your logic that our conversations about our own children need to reflect the actual number of successes / failures in the world requires that for every 10 positive posts someone makes about CIs, there needs to be 1 that mentions a negative.

And so, now we need some imaginary figure of 'failure' for other topics on AD. So every XX times I mention my daughter's bi-bi school positively -- which I admit, I do a whole lot, because I love it -- I need to throw in a disclaimer that XX % of kids at bi-bi schools do not achieve the same successful results.

Isn't this requirement that we are not objective unless we temper anything positive we say with negatives a bit unreasonable?
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:blah::blah: Did you guys read what I just posted? :cool2:
 
Some people are one issue wonders here. I like my reality! Pass me some pie.
 
I know. We're a whole board of d/Deaf people who actually understand how it is. And we get confronted non-stop by what, FOUR or FIVE ? hearing parents who think they know better than any of us do. Yep, at least the d/Deaf can be realistic, SallyLou.
 
posts from hell said:
ARMCHAIR RESEARCH:


I'm going to take this one big step further and use the professionally done "downplaying tendencies" that has been demonstrated here on AllDeaf.com.

According to Wikipedia.com there are 70,000 people as of April 2009 that has CI's.
link: Cochlear implant - Wikipedia, the free encyclopedia

According to Maude database there are 1075 issues with cochlear implants recorded in the year of 2011 alone. (1/1/11-9/11/11)
link: MAUDE - Manufacturer and User Facility Device Experience

Let's dumb it down............. a lot....

1000 issues with cochlear implants in a calendar year.....
let's say...... 400,000 people has cochlear implants in America..

That's 400:1.

But hey...

There's around 100,000 people in America with CI's, and 1000 issues a year....

What's that?
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posts from hell said:
:blah::blah: Did you guys read what I just posted? :cool2:
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I did.
 
posts from hell said:
:blah::blah: Did you guys read what I just posted? :cool2:
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Yes, the numbers are off. I'd try to correct it, but I really don't want to go through each Maude item and filter out issues such as "patient reported some swelling after surgery; physician examined incision point." And I don't think there are 400K recipients in the US yet. I used the MAUDE db as a good reference point, but as you probably found, it's very hard to churn through the numbers and select the type of issue you happen to consider "failure" from some other reported incident. The CI companies themselves provide a lot of data, too and do a whole lot of self-auditing.

But as for blah blah: this whole discussion was about hearing parents not being representative of the actual failure rate of CIs. And as I said, we actually are under representing the numbers of kids who are successful CI users -- not over representing. Not by any stretch of the numbers, not even if the rate of failure was 1:10, or even 1:5.
 
Even an enthusiastic user like Baseball boy reports upon actual failures and reimplantation.

By his own experience in 16 years, more than once.
 
Bottesini said:
Even an enthusiastic user like Baseball boy reports upon actual failures and reimplantation.

By his own experience in 16 years, more than once.
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Yes, there are quite a few who have related negative experiences here, including a parent of a child with a CI. And yet we -- hearing parents of kids with CIs and CI recipients themselves -- keep getting accused of not reflecting reality.
 
GrendelQ said:
Yes, the numbers are off. I'd try to correct it, but I really don't want to go through each Maude item and filter out issues such as "patient reported some swelling after surgery; physician examined incision point." And I don't think there are 400K recipients in the US yet. I used the MAUDE db as a good reference point, but as you probably found, it's very hard to churn through the numbers and select the type of issue you happen to consider "failure" from some other reported incident. The CI companies themselves provide a lot of data, too and do a whole lot of self-auditing.

But as for blah blah: this whole discussion was about hearing parents not being representative of the actual failure rate of CIs. And as I said, we actually are under representing the numbers of kids who are successful CI users -- not over representing. Not by any stretch of the numbers, not even if the rate of failure was 1:10, or even 1:5.
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fine....... 1 in 250 required explants........ lets say.. thats 1 in 400.. and much closer to 1:100 than 1:1000 as you claimed..

That's the downplaying we're referring to.

Simple.........

And our definitions of failure differs majorly. Yours with the hearing perspective, ours within the deaf.... and even these in the deaf differs.

Keep in mind - Maude does not receive every report such as what you claim - surgeon inspected the incision point.. For it to be reported to Maude the issues has to be more serious than your average issues. I wouldn't be surprised the doctors had a serious issue, then worded it so so it looked alright on Maude. It happens all the times, downplaying that is.

:ty:
 
GrendelQ said:
Yes, the numbers are off. I'd try to correct it, but I really don't want to go through each Maude item and filter out issues such as "patient reported some swelling after surgery; physician examined incision point." And I don't think there are 400K recipients in the US yet. I used the MAUDE db as a good reference point, but as you probably found, it's very hard to churn through the numbers and select the type of issue you happen to consider "failure" from some other reported incident. The CI companies themselves provide a lot of data, too and do a whole lot of self-auditing.

But as for blah blah: this whole discussion was about hearing parents not being representative of the actual failure rate of CIs. And as I said, we actually are under representing the numbers of kids who are successful CI users -- not over representing. Not by any stretch of the numbers, not even if the rate of failure was 1:10, or even 1:5.
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If the patients report headaches, soreness, vertigo, etc., do you still consider them successes? It sure seems like the CI companies do.
 
GrendelQ said:
Yes, there are quite a few who have related negative experiences here, including a parent of a child with a CI. And yet we -- hearing parents of kids with CIs and CI recipients themselves -- keep getting accused of not reflecting reality.
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Tis true, like 1 in 1000... crazy.
 
Some people get CI hoping to stop some of the vertigo. From what I've been told, it doesn't always work. Guess that it depends on the medical condition and extent of damage.
 
posts from hell said:
fine....... 1 in 250 required explants........ lets say.. thats 1 in 400.. and much closer to 1:100 than 1:1000 as you claimed..

That's the downplaying we're referring to.

Simple.........

And our definitions of failure differs majorly. Yours with the hearing perspective, ours within the deaf.... and even these in the deaf differs.

Keep in mind - Maude does not receive every report such as what you claim - surgeon inspected the incision point.. For it to be reported to Maude the issues has to be more serious than your average issues. I wouldn't be surprised the doctors had a serious issue, then worded it so so it looked alright on Maude. It happens all the times, downplaying that is.

:ty:
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No, it's a tough db to wade through, because it captures "adverse reports" -- so in addition to following one patient through several visits (which you'll see in a few cases where it's the same patient and situation being described at different treatment points), you get such things as this:

"the patient sustained a blow to the head in an auto accident resulting in the magnet becoming dislodged from the internal device. Surgery to replace the magnet is planned but has not taken place as of the date of this report"

"It was reported that three weeks ago, the pt complained about a decrease in hearing sensation."

I'm not saying these are positive things, and the db isn't going to capture every visit to a CI clinic or any issue experienced, just as it also isn't going to give you accurate stats if you equate "adverse reports" with explants and think that 1 in 250 recipients have required explants. Look, I don't like seeing that there are ANY explants, so I'm not saying that a .02% rate is great or even good. Especially painful if my daughter falls into that percentage, but still painful to know that others have to deal with it.

But the rate of CI failure is not being underrepresented here on AD by those who have a CI or have children with CIs. If anything, quite the opposite, given the nature of this forum.
 
GrendelQ said:
No, it's a tough db to wade through, because it captures "adverse reports" -- so in addition to following one patient through several visits (which you'll see in a few cases where it's the same patient and situation being described at different treatment points), you get such things as this:

"the patient sustained a blow to the head in an auto accident resulting in the magnet becoming dislodged from the internal device. Surgery to replace the magnet is planned but has not taken place as of the date of this report"

"It was reported that three weeks ago, the pt complained about a decrease in hearing sensation."

I'm not saying these are positive things, and the db isn't going to capture every visit to a CI clinic or any issue experienced, just as it also isn't going to give you accurate stats if you equate "adverse reports" with explants and think that 1 in 250 recipients have required explants. Look, I don't like seeing that there are ANY explants, so I'm not saying that a .02% rate is great or even good. Especially painful if my daughter falls into that percentage, but still painful to know that others have to deal with it.

But the rate of CI failure is not being underrepresented here on AD by those who have a CI or have children with CIs. If anything, quite the opposite, given the nature of this forum.
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yes..... yes.........

now your turn, 1000:1?
 
To PFH: surely 1 in 1000 means 999 were successful. Correct?

Implanted A B Harmony activated Aug/07
 
AlleyCat said:
I know. We're a whole board of d/Deaf people who actually understand how it is. And we get confronted non-stop by what, FOUR or FIVE ? hearing parents who think they know better than any of us do. Yep, at least the d/Deaf can be realistic, SallyLou.
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I been seeing d/Deaf a lot lately, what is the difference... I mean deaf is deaf right?
Bottesini said:
Even an enthusiastic user like Baseball boy reports upon actual failures and reimplantation.
By his own experience in 16 years, more than once.
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Re-implantation this year was my decision, which I decided to get an reimplant. Besides they WILL FAIL eventually again. I dont think you guys really realize that ALL TECHONOGY breaks (and that includes what you insert into your body)
 
Wirelessly posted

for this discussion to be useful, first we would have to define what a "failure" would mean. Are we just talking about a device not working and requiring explant? Does that include when there is an outside cause (like the car accident mentioned)? Or, as i suspect pfh intends, any complication at all?
 
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