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

[jackiesolorzano]

Jag you are so right I the hearing person in my family is the one who suffers from Vertigo for years and years, awful isn't.
Our implant center did tell us that our kids could suffer from vertigo, they haven't though. Our center told us all about complications and dangers.
I did do my research about the Deaf culter, TC, CUED speech and oral education. I did make an informed decision.
I am sure as Jillo said there are parents who make uninformed decision but I do not think it is the majority.
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.

Sorry for going off the subject. I wanted to let you all know that the school district has dropped the appeal in my daughter's case. She will have CART for the rest of her high school education.

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.

 

[Silencio]

CI Risks

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.

Any surgical procedure and, really, any life activity, whether it be CI surgery or crossing a busy street, involves assessment of the risk of a bad result. If humans restricted their activities to those with no risk at all then eating, drinking and breathing would all be prohibited.

If you want to put this in perspective, google "cochlear implant risks" and read some articles about it. Then google "child birth risks" and read about that. Pick some other surgical procedures and read about their risks. I think you will find that the risks of CI surgery are actually quite minimal compared to most surgical procedures. That doesn't mean the risks aren't real or that you won't be the unfortunate person who experiences a negative result. That's life. But it is really just not very honest to say that you didn't know the risks or that you weren't informed of the risks.

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.

 

[rockdrummer]

Hopefully most adults are aware that nothing is perfect. What in life is? The information should be accurate for both the pro's and con's. Then folks can make a sound decision and feel confident about it. The problem is where do you go for accurate information? Who do you trust? How do you know you are getting the full picture? Personally I think the information should be regulated and each and every case should be documented using agreed upon standards.

 

[jillio]

Hopefully most adults are aware that nothing is perfect. What in life is? The information should be accurate for both the pro's and con's. Then folks can make a sound decision and feel confident about it. The problem is where do you go for accurate information? Who do you trust? How do you know you are getting the full picture? Personally I think the information should be regulated and each and every case should be documented using agreed upon standards.

I agree with you completely, rd. And the surgical risks are not the only complications that one needs to be informed of. Hospitals and doctors are legally respsonsible for informing a patient only of those risks directly related tot he surgical procedure itself in order to comply with the informed consent laws. There are many, many other implications of which parents are not informed.

 

[Silencio]

Please name them, Jillio

\ There are many, many other implications of which parents are not informed.

x

 

[jillio]

x

Linguistic, educational, cognitive, psychosocial, and cultural.

 

[rockdrummer]

I agree with you completely, rd. And the surgical risks are not the only complications that one needs to be informed of. Hospitals and doctors are legally respsonsible for informing a patient only of those risks directly related tot he surgical procedure itself in order to comply with the informed consent laws. There are many, many other implications of which parents are not informed.

Yes I believe we discussed this in another thread. I believe a doctors success rate is based on proper installation of the CI without complications. That is only a small part of overall success. That makes me think that in addition to statistics that measure the various milestones for success, people should also be a ware of what they need to do in order to have a better chance of success. (i.e. thearapy, programming, ongoing adjustments etc.) It would be the wrong impression for someone to think that success with the surgury would mean overall success. That would be a setup for a letdown.

 

[jillio]

Yes I believe we discussed this in another thread. I believe a doctors success rate is based on proper installation of the CI without complications. That is only a small part of overall success. That makes me think that in addition to statistics that measure the various milestones for success, people should also be a ware of what they need to do in order to have a better chance of success. (i.e. thearapy, programming, ongoing adjustments etc.) It would be the wrong impression for someone to think that success with the surgury would mean overall success. That would be a setup for a letdown.

Agreed.

 

[Cheri]

When someone is a candidate

does everyone is aware of side-effects before they go ahead with cochlear implants? let's be honest would be greatly appreciated.

skin infection from the surgery? onset of tinnitus? damage to the vestibular system? damage to facial nerves that can cause muscle weakness and paralysis? risk of device failure? incision that does not heal properly? higher risk for meningitis? and so on...

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.

Am I making myself clear here? Ty.

 

[rockdrummer]

When someone is a candidate

does everyone is aware of side-effects before they go ahead with cochlear implants? let's be honest would be greatly appreciated.

skin infection from the surgery? onset of tinnitus? damage to the vestibular system? damage to facial nerves that can cause muscle weakness and paralysis? risk of device failure? incision that does not heal properly? higher risk for meningitis? and so on...

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.

Am I making myself clear here? Ty.

Yes you are crystal clear about this. I think part of the problem is that people considering a CI don't have easy access to all of the information needed to make a sound decision. I guess that was my point. Sorry if I'm off topic. :|

 

[Cheri]

Yes you are crystal clear about this. I think part of the problem is that people considering a CI don't have easy access to all of the information needed to make a sound decision. I guess that was my point. Sorry if I'm off topic. :|

No, you weren't going off topic. Your input is very important especially on my threads.

 

[Silencio]

Linguistic, educational, cognitive, psychosocial, and cultural.

And what, specifically, are the undisclosed linguistic, educational, cognitive, psychosocial risks of a cochlear implant, Jillio? You regularly refer to your knowledge of the literature in this field. Can you cite for us some studies that show that these complications exist and that patients are not informed of them?

 

[Cheri]

Can you cite for us some studies that show that these complications exist and that patients are not informed of them?

That's the problem just like what rockdrummer stated, "people considering a CI don't have easy access to all of the information needed to make a sound decision."

Why?

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.

 

[rockdrummer]

And what, specifically, are the undisclosed linguistic, educational, cognitive, psychosocial risks of a cochlear implant, Jillio? You regularly refer to your knowledge of the literature in this field. Can you cite for us some studies that show that these complications exist and that patients are not informed of them?

Sorry to intrude on your question to Jillio but I can tell you from personal experience that not all information is eaisly accessable. I don't think any one area is intentionally holding back information as much as the overall picture is not disclosed. The surgons aren't going to tell you about any issues you will face other than those specific to surgury. And they are the ones pushing the CI as a solution. When you are not even aware of all the issues then it's even more difficult to seek out information because you dont even know what you are looking for.

 

[Silencio]

Yes you are crystal clear about this. I think part of the problem is that people considering a CI don't have easy access to all of the information needed to make a sound decision. I guess that was my point. Sorry if I'm off topic. :|

I don't understand why you say people don't have easy access to this information. All of the risks mentioned in this thread are parts of the standard risk disclosure in any CI surgery authorization. You would have to close your eyes and plug your ears (if necessary :P) to avoid hearing about the risks.

Here are the first five results for a google search for "cochlear implant risks."
They are just full of scary stuff:

Benefits / Risks
US FDA/CDRH: Advice for Patients with Cochlear Implants: New Information on Meningitis Risk
Cochlear Implant Page
Cochlear Implant
FDA Warns of Cochlear Implant Risks

It is just not very helpful just to say there are risks. Everybody knows that. Do you have any thoughts on how to intelligently assess the risks?

 

[jillio]

And what, specifically, are the undisclosed linguistic, educational, cognitive, psychosocial risks of a cochlear implant, Jillio? You regularly refer to your knowledge of the literature in this field. Can you cite for us some studies that show that these complications exist and that patients are not informed of them?

Since you have stated that I "regularly refer", then you have undoubtedly also seen where I have cited. In addition, all you need to do is browse the forum, and you will see various posts by deaf CIers,a nd parents of deaf children.

The surgical risks are but one of the complications that reduce effectiveness of the CI. The reports of soft failures are generally not disclosed.

 

[jillio]

I don't understand why you say people don't have easy access to this information. All of the risks mentioned in this thread are parts of the standard risk disclosure in any CI surgery authorization. You would have to close your eyes and plug your ears (if necessary :P) to avoid hearing about the risks.

Here are the first five results for a google search for "cochlear implant risks."
They are just full of scary stuff:

Benefits / Risks
US FDA/CDRH: Advice for Patients with Cochlear Implants: New Information on Meningitis Risk
Cochlear Implant Page
Cochlear Implant
FDA Warns of Cochlear Implant Risks

It is just not very helpful just to say there are risks. Everybody knows that. Do you have any thoughts on how to intelligently assess the risks?

You are focusing only on the surgical risks. To do so is to oversimplify the issue. The risk has to be assessed in a comprehensive manner when making a decision that affects a child's future in a comprehensive manner. And, btw, rd is a parent who has experienced the search for information first hand.

 

[jillio]

Sorry to intrude on your question to Jillio but I can tell you from personal experience that not all information is eaisly accessable. I don't think any one area is intentionally holding back information as much as the overall picture is not disclosed. The surgons aren't going to tell you about any issues you will face other than those specific to surgury. And they are the ones pushing the CI as a solution. When you are not even aware of all the issues then it's even more difficult to seek out information because you dont even know what you are looking for.

Not a problem, rd. Intrude away!

 

[rockdrummer]

I don't understand why you say people don't have easy access to this information. All of the risks mentioned in this thread are parts of the standard risk disclosure in any CI surgery authorization. You would have to close your eyes and plug your ears (if necessary :P) to avoid hearing about the risks.

Here are the first five results for a google search for "cochlear implant risks."
They are just full of scary stuff:

Benefits / Risks
US FDA/CDRH: Advice for Patients with Cochlear Implants: New Information on Meningitis Risk
Cochlear Implant Page
Cochlear Implant
FDA Warns of Cochlear Implant Risks

It is just not very helpful just to say there are risks. Everybody knows that. Do you have any thoughts on how to intelligently assess the risks?

I agree that there is more information on the web today than there was 10 years ago. I also know that you have to take what you find on the net with a grain of salt and in some cases the information is spun to meet an agenda. My confidence level of such information is not as high as it would be from a regulated objective source that uses an agreed upon standard for measurement and is all inclusive and subjected to periodic peer review. That would be information I would feel more confident about.

 

[Silencio]

You are focusing only on the surgical risks. To do so is to oversimplify the issue. The risk has to assessed in a comprehensive manner when making a decision that affects a child's future in a comprehensive manner. And, btw, rd is a parent who has experienced the search for information first hand.

Sorry, Jillio. I am not about to sort through your 6500+ posts churned out at a rate of 12+ per day to find out if you have any basis for your claims. If you have the time to answer my question, I would appreciate it. If not, I understand. You are obviously a busy person.