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

[rockdrummer]

Every one of the web references in my post list multiple possible negative consequences of CI surgery. The first two are from the FDA, which I assume would qualify as a "regulated objective source."

I get the impression that you do not trust information provided by a surgeon or hospital, by the FDA or by websites. I would be sincerely interested to know what sources you would rely on for facts with which to make a decision about a cochlear implant.

I do trust what the doctors say about the surgical risks. I believe they are legally obligated to inform of those risks. There was a time in my life when I completly trusted doctors because I honestly believed they always had the best interest of the patient at heart. Many of them do but the reality is there are also doctors out there that have an agenda that doesn't always put the patients interest at the forefront. If you don't believe that then you have blinders on. Just watch the news.

The FDA is doing a better job these days then they did in the past but I am not convinced its an accurate complete picture. I also know that the FDA is pressured at times to approve things that should perhaps take more time to study and therefore I would not consider them to be completly objective. The FDA is a government body and as such I am quite sure they are influenced by economics. Just look at history and how many drugs they have approved that turned out to cause major problems and in some cases even death. It's the drug companies that are pressuring them to release things to market before enough studies can be completed.

Regarding information on websites It would really depend on the source. You know that anyone has the ability to put up a website and fill it with information. My trust in those sites would depend on the content and where it came from along with any citings and their sources. It would be foolish for anyone to trust something just because it's on the web. It would be foolish for anyone to trust something just because the FDA says so. The smart thing in todays climate would be to gather information from many sources and that must include the deaf community and their views. Part of the problem is finding information about actual statistics. Show me a source that can provide me with the statistics on success for everyone implanted in the USA. To me success with a CI is measured by the implantee's ability to connect with the sounds of their environment and make use of that. Not just if the surgury was a success. The point I think you are missing are that there are many more aspects to the desicion that just the surgical risks. There are many more aspects than just the surgury that would constitute success. What I would trust is a source that has metrics on eveyone that has an implant and that measures success at several milestones. I don't believe there is such a source today.

I belive that the first thing a person must ponder is what is their view on deafness. Is it a pathalogical view or is it a cultural one. Before someone can really educate themselves they must answer in their own mind that question and before answering it they must understand both sides. At least in my opinion.



I would be interested in your background on this. Are you the parent of a deaf child? Do you work in the medical community or are you just someone that has in interest in the subject?

 

[jag]

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.

Yes Eve I understand quite well what vertigo is, as I said my husband had it pretty bad this past spring, he still has occasional times when he gets dizzy. Lying under his corn planter was worse then standing up for him. My co workers sister went through a couple months where she actually got so dizzy she felt sick. And she's only around 30 yrs old. My husband used the little pills (who knows maybe they were placebos, lol but said he really didn't think they worked that great) Not sure about my firends sister but she did have to wait for things to renormalize themselves.

For people who have problems normalizing the little crystals/fluid in the ear that control balance there is some type of theraphy they do. NOt sure what it is but I do know that the waiting area I use when going to go for programming includes a balance theraphy/testing . Those going back there are mostly elderly people, and it is common for the elderly to have balance problems. I hope that over time your husbands balance problems become better.

 

[jackiesolorzano]

I don't know about other implant centers but at our implant center we had to go through a week of different appointments before my children were consider for an implant. We had to see a psychologist to see if we really understood what the implant could and could not do. They explain the risks and possible benefits. We had to see the surgeon several times where he again went over all the risks. We signed a 4 page consent that they read over each and every line.

 

[Dogirl]

People forget what they are told and often seek to avoid responsibility for their mistakes. It is human nature. Can you point me to any lawsuits that have been filed, let alone successfully litigated, where a CI recipient claimed not to have been informed fully of the risks?

I agree Silencio,

Most people look to place blame when things do not work out the way they like. It is human nature. And even if they can't specifically blame another person or entity, anger tends to surface, and that anger is generally directed at someone or something, whether diserving or not. Again, human nature.

Instead of focusing on the coulda, shoulda, woulda's, energy is best directed on what can be done to improve a situation now.

I can definately understand why some of you feel the way you do about CI's and early implantation in children. However, I have started to tune you out because some of these posts show up in EVERY thread about CI's whether it is relative to the subject or not. Tends to be a little overwhelming and annoying. You need a different approach, I feel, to get your point across. Also, some of you are a bit abrasive...most people respond in kind to abrasive.

dogirl

 

[jag]

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...


Am I making myself clear here? Ty.

I'm sure that like every other field that anyone can think of from medical to teaching to law to politics there are unethical people out there who take advantage of others. And in the medical field which is very much a field where the drs will get sued for any little thing that is beyond their control the number for un ethical shysters is probably very low.

Having said that I have to state that I was informed of all the possible side effects you've listed. It sounds like even the one talking about her husbands case of virtigo had been informed that is was a side effect. Life isn't fair and sometimes we are left to deal with actually being the one who has that effect. My chances of my youngest child, who was concieved when I was 31 having down syndrome weren't bad, when the AFP was done they increase to something likne 1 in 800, still not that awful, right? In the end someone has to be that 1, my daughter was. And do you know how many women I know who were older who had completely normal babies who were over the magic age of 35? Life is what it is. there are no guarentees, in anything, having had expericence in having the 1, I found the risks associated with implantation to be mimininal, so had no problem just jumping in even tho things could have come out worse then they were when I went in.

 

[Tousi]

Yeah, Rockdrummer, good post! Can you imagine what a landmark legal decision that would be if a malpractice suit was carried out to fruition based on the system's failure to incorporate the cultural & education side of a CI implantation? I shan't be holding my breath, though.

 

[jag]

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.

Well no, but you also are going through testing from an audiologist who knows about programming and such and they do inform you of what to expect from the device itself. My team was quite good at that and answered my questions. So one should not just relie on the surgeon.

 

[jag]

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.

Ah you may be more trusting then I. Personally since I've seen to many differetnt studies in different areas not just hearing, be manipulated to meet whatever they study is supposed to say, I have to make my decisions based on which source I think may be more accurate. I don't rely on goverment regulation to do so since anything they seem to get their nose in is manipulated by someone. One has to decide which risks one is going to take. I chose to take the risk to hear and that risk was NOT just the surgical part it included the very hugh risk that I would hear much much less when all was said and done. I was informed of that risk. Statistics are meaningless when you have already been the 1 in however many. Which I have. In my case it's "lifes a bitch and then you die' so why continue to suffer when there's that chance things can improve.

 

[rockdrummer]

Ah you may be more trusting then I. Personally since I've seen to many differetnt studies in different areas not just hearing, be manipulated to meet whatever they study is supposed to say, I have to make my decisions based on which source I think may be more accurate. I don't rely on goverment regulation to do so since anything they seem to get their nose in is manipulated by someone. One has to decide which risks one is going to take. I chose to take the risk to hear and that risk was NOT just the surgical part it included the very hugh risk that I would hear much much less when all was said and done. I was informed of that risk. Statistics are meaningless when you have already been the 1 in however many. Which I have. In my case it's "lifes a bitch and then you die' so why continue to suffer when there's that chance things can improve.

lol... sorry if I gave you the impression that I was trusting. I'm only cynical because of personal experience and observation. I totally agree with your point on statistics. In our case it was just after the FDA approved CI's for children and the first surgury was not performed properly. The second implant was one of the first with multiple arrays. Neither worked. But get this. The first implant was not faulted to the CI company because the surgury was not performed correcty. The second was considered a surgical success and the CI processor was able to communicate with the implant so it was considered a success to the CI manufacture. Ask me if I would consider it a success. I guess that's why medicine is considered "a practice". The point about risk is a good one and I think folks are echoing there are more risks than just the surgury. When you sign the mandatory waiver to undergo any surgury, you are essentially rolling the dice. In the case of bringing up a deaf child I think one must consider far more than just the surgury. To do that you have to understand child development to an extent. You need to understand how the brain develops. From what I understand, the aquisition of language has a profound impact on brain activity and development.

I can't say that today I trust any single source but I would have the most faith in the scientific community. As time goes on, the findings from objective studies becomes more avaialable. If you consider just the surgical risks then you will only seek information on that particular aspect. I'ts a complex subject that requires research. I believe the direction one takes is somewhat based on the fundamental question on how they view deafness. Pathalogical or cultural.

 

[jag]

And you honestly believe that physicians, audis, and other CI professionals are informing all patients of all of these risks prior to recommendation and surgery.

They inform of the more important ones. The ones that are just common sense like having to be careful with getting the processor wet are probably discussed more with parents who are implanting children. and even that is probably aready known to parents since the child has usually had to use HA's to prove they are not effective. And reading the list is does say that they may not hear as well as others who have had more success. And in my expericenc I was informed. People hear and believe what they want. They ignore those things they think will not effect them. Hope springs eternal ya know.

IMO the fact that there are parents who let thier child go through school with very very obvious language delays while listening to the experts in teh school system saying that they can help the child learn to speak are idiots.

Harsh , yeah but one does not 'just' notice a 12 yo is having diffuculities in language.

a year is not a hugh delay for a child of 5 who heard nothing for the first 18 months of life because the average is just that an average and normal hearing kids have delays and understanding even better all along that 'average' for a 5 yr old.

But if we look at the same child at 12 yrs old and that child is still testing as a 5 yrs old then the parents have been very negectful in their IEP prep and to trusting of the so called eperts in the schools and the audiological dept of the CI center. If the parent continues to have hope of the course of 7 yrs when nothing is changing then sorry but that is the parents responsiblity.

If a parent watches the child continue to struggle with spoken language it is the parent who is ignoring their child not the implant team. No matter what any audiologist or school speech therapist or special education teacher says the parent is in the end responsible for finding out how to best help their child. We did so with our youngest and it was very contrary to what the ST at school thought we should do. Unfortunately we find we should have changed course sooner, and the fact that we didn't is not the schools fault but ours. We as parents are responsible not the 'experts'. We that parents were well aware of what she was missing. No study can show how well our child would speak, in her case she was again one of those who were on the negative side. The first instance was when she was the 1 out of 800 or whatever that number was who would have down syndrome.

 

[Silencio]

I would be interested in your background on this. Are you the parent of a deaf child? Do you work in the medical community or are you just someone that has in interest in the subject?[/QUOTE]


I do not have a deaf child and I do not work in the "medical community." I am a late deafened adult and CI user, as I said above.

 

[rockdrummer]

I do not have a deaf child and I do not work in the "medical community." I am a late deafened adult and CI user, as I said above.

Sorry I missed that you said that above. Nice to meet you. Wouldn't you agree that a post lingually deafened adult vs. a parent with a deaf child would use different criteria in thier decision to opt for a CI?

 

[jillio]

One more chance, Jillio. What is the big picture? What are these facts the medical community is hiding from CI candidates? I am sorry you feel insulted by my questions. You are entitled to your own opinion, but you are not entitled to your own facts and so far you haven't posted fact one.

I have already answered your questions. Other posters have already answered your questions. You simply don't like the answers.
Oh, and one more chance for what? I wasn't aware that it was your job to deal out untimatums on this board.

 

[jillio]

Sorry I missed that you said that above. Nice to meet you. Wouldn't you agree that a post lingually deafened adult vs. a parent with a deaf child would use different criteria in thier decision to opt for a CI?

Absolutley, which is the reason why that your experience as applied to a discussion of deaf children and hearing parents is not comparable. Nor are the issues regarding CI success in a prelingually deafened child and the issues of a post-lingually deafened adult comaprable.

 

[jillio]

YW

"The first and third reference are from 1990 and 1994 respectively, so I would suspect that the results might be somewhat different if the same studies were conducted today. For example, in 1994 Lane and Behan said "psychological, social, and linguistic risks have not been assessed." It would seem likely more studies have been done since then, don't you think? " I thought the same, Silencio, but I can't find many studies about these risks. Most research only word comprehension, verbal ability etc or interaction with hearing kids - not deaf/HoH. I didn't find studies about kids with CI socislizing effects with other deaf/HoH at all.

Maybe I need more searching.

Check out Marshark's lit review of several studies conducted with implanted children. It is in the spring issue of the Jouranl of Deaf Studies and Education. You should be able to get it through your university library, on line.

 

[jillio]

I'm afraid I concur with you. They don't realize that language skills is so important till it's too late and even when it's apparent that the child has a language delay, they think the CI will take care of the delay.

Exactly. Which is why I maintain that being informed of the surgical risks is not supplying complete information to these parents. There is more that needs to be considered than simply medical risks and limtiations if a parent is to be fully informed regarding the life long implications of the decision they are making.

 

[jillio]

Personally I think it's the doctor's and the audiologists duty to warn of that risk and that the parents should ensure that their deaf child's language skills doesn't lag behind that of the child's peers.

I agree with you on that point. The doctor and the audi are the professionals that have the first and most influential contact with the parents. Therefore, they should be referring parents out to those who can provide this information, if they don't bother to provide it directly.

 

[jillio]

I most definitely don't consider my experience to be different from others, Jillio. It would be extremely irresponsible for any surgeon, hospital or audiologist to perform a CI implant on a patient who had not been thoroughly advised of every possible known risk associated with the surgery. Informed consent is required if the medical provider is to avoid liability for a bad result. The incentive is to avoid a malpractice claim when the surgery is performed correctly, but the result is not what the patient wanted. Because of this, medical providers are inclined to disclose even minimal and ephemeral risks. There is no reason whatever to hide these risks. To do so would be reckless in the extreme.

I am certain that many people claim they were not advised of the risks. Why should those claims be taken seriously? Unless you have examined their medical providers' files and found the disclsure docuemnts absent, why would you accept their word for it? People forget what they are told and often seek to avoid responsibility for their mistakes. It is human nature. Can you point me to any lawsuits that have been filed, let alone successfully litigated, where a CI recipient claimed not to have been informed fully of the risks?

Once again, you are focusing on surgical risks only. You are limiting your perspective.

 

[neecy]

I also think that all people (be they parents of children, teenagers, adults) should realize that when you have a CI implanted, once you're activated, you aren't going to immediately understand and recognize everything around you (speech and sounds.) Its a tool, not a magic wand. You have to work WITH it....but one of the positives about that is if you are willing to do the work, things keep getting better! I'm 2 years post-activation and STILL having regular CI moments

 

[jillio]

And in your medical file at the hospital or in the surgeon's office, there is no detailed document you signed (maybe without reading it fully) that discloses all the risks that were known at the time? You are certain about that?

Why is it that you discount the statements of the CI users and the deaf posters regarding their experience? Why would you automatically assume that it is the deaf poster who did not understand as opposed to the surgeon who did not inform?