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

[jillio]

Jillio, do you consider the risk disclosure from the FDA adequate or not?

When it comes to the information needed by the parent of a deaf child in order to amke a decision that will have a life long impact on the child's development, no I do not consider this information to be adequate. As stated, this information is related to the medical aspects of implantation alone. For a deaf child, that is a very minimal part of the whole picture.

 

[jillio]

I see where the problem here is: On the one hand, there is the purely medical aspect of the CI, specifically the surgery to implant this device. The surgeon's part is easy and, as I've said before, let's give him 5% for his effort. He, generally, knows nothing about deafness beyond the medical. On the other hand, we have the concerns with mappings, etc in order for the CI to become "successful", whatever is meant by that. This requires an audiologist and dare I say, of all of these people, not many know much about deafness beyond the medical either. So let's give the audiologist 10% for his/her effort. After spreading some more credit to people like the ones who come up with the wonderful software to assist the implantee, let's assess 70% to the implantee to make sure the CI is successful. Standing in the way of the implantee, depending on your perspective are all of the various educational philosophies out there for the deaf. And since it has been widely accepted that simultaneous offering of ASL and English (the bi-bi approach) should be the way to go for the majority of prelingually deafened individuals.

It gets rather complex now but back to the original question of the surgery: The surgery itself is nothing compared to what's ahead to make one a well-rounded individual. The critical part is from turn-on day to completion (if ever) of the training....

 

[jillio]

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

And, that is exactly what we are attempting to do in the discussions regarding full disclosure and appropriate information being supplied to parents byt he professionals resposnible for the consultations and the surgery. To change the situation so that the shouldas couldas and wouldas are not so frequentlyu occurring.

 

[Bear]

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?

RD the problem I see in your post is, how do you define success? Success is so widely attributed that it is hard to base a success on a standard.

You know me by now RD, while I agree that both positive and negatives need to be said and known about a CI, I also wanna know how we can determine a success or a failure.

I ask this because success is an individual idea. Let me give you an example of what I mean.

Case 1

Myself- My goal upon implantation was to be able to hear music again. I achieved that goal. I consider my CI a success, others would not. But I do.

Case 2

Another adult- Goal upon implantation is to be able to hear enviromental sounds, such as rain. This person hears that, so therefore considers the CI a success, others would not. But they do.

Case 3

A child is implanted-a parents goal for that child is to be able to hear and have oral skills. The child achieves the oral skills and can understand what is said around them. However the child suffered some language delays over time. The parents consider the CI a success, others do not. But the parents do.


So what is success really? Something everyone accepts? Or is it something the individual accepts?

 

[jag]

I'm still wondering did this person ever get around to writing an article or was the blog explaining why she was going to write the article the only thing she ever wrote?

Just wondering............

 

[Cheri]

I'm still wondering did this person ever get around to writing an article or was the blog explaining why she was going to write the article the only thing she ever wrote?

Just wondering............

Aren't you impatient person or what? She stated that she's working on an article, so have a little bit more patiences.

 

[jillio]

Aren't you impatient person or what? She stated that she's working on an article, so have a little bit more patiences.

**nodding agreement** Gathering data necessary to complete a comprehensive article like this can take a year or more.

 

[jag]

Aren't you impatient person or what? She stated that she's working on an article, so have a little bit more patiences.

Well I was wondering, you place it in a link that seems to imply it's an article on the cons of CI. Fine no problem with that. the actual link is not an article on the cons but an explanation on why she decided to gather information to write and article. She placed that blog back in Feb and so far there isn't much there or a link to the actual article. In which case one has to wonder if she decided to not go through with it. But whatever.

 

[vallee]

Well I was wondering, you place it in a link that seems to imply it's an article on the cons of CI. Fine no problem with that. the actual link is not an article on the cons but an explanation on why she decided to gather information to write and article. She placed that blog back in Feb and so far there isn't much there or a link to the actual article. In which case one has to wonder if she decided to not go through with it. But whatever.

I agree - how valid it is? Its a blog not an article. Research takes time, but this seems to be just an article.

 

[rockdrummer]

RD the problem I see in your post is, how do you define success? Success is so widely attributed that it is hard to base a success on a standard.

You know me by now RD, while I agree that both positive and negatives need to be said and known about a CI, I also wanna know how we can determine a success or a failure.

I ask this because success is an individual idea. Let me give you an example of what I mean.

Case 1

Myself- My goal upon implantation was to be able to hear music again. I achieved that goal. I consider my CI a success, others would not. But I do.

Case 2

Another adult- Goal upon implantation is to be able to hear enviromental sounds, such as rain. This person hears that, so therefore considers the CI a success, others would not. But they do.

Case 3

A child is implanted-a parents goal for that child is to be able to hear and have oral skills. The child achieves the oral skills and can understand what is said around them. However the child suffered some language delays over time. The parents consider the CI a success, others do not. But the parents do.


So what is success really? Something everyone accepts? Or is it something the individual accepts?

I agree Bear, success can be defined personally. I guess that depends on your expectations. To me, overall success would be when whatever objectives you set forth are met. I would imagine those objectives will vary depending several factors. Such as; how old you are, your level of education, if you are Pre or post lingually deaf, etc. I agree that some parents may have differing goals. To me facing this decision for my child, success would be if my child was able to process sounds and make use of those sounds to learn and develop. As someone that loves music, I'm happy that you met your goal and can now enjoy music.

To get the information out sometimes has to be a grass roots effort such as Karen is doing. I commend her for her efforts.

 

[flip]

RD the problem I see in your post is, how do you define success? Success is so widely attributed that it is hard to base a success on a standard.

You know me by now RD, while I agree that both positive and negatives need to be said and known about a CI, I also wanna know how we can determine a success or a failure.

I ask this because success is an individual idea. Let me give you an example of what I mean.

Case 1

Myself- My goal upon implantation was to be able to hear music again. I achieved that goal. I consider my CI a success, others would not. But I do.

Case 2

Another adult- Goal upon implantation is to be able to hear enviromental sounds, such as rain. This person hears that, so therefore considers the CI a success, others would not. But they do.

Case 3

A child is implanted-a parents goal for that child is to be able to hear and have oral skills. The child achieves the oral skills and can understand what is said around them. However the child suffered some language delays over time. The parents consider the CI a success, others do not. But the parents do.


So what is success really? Something everyone accepts? Or is it something the individual accepts?

Good point. Agree success can be something "everyone" and "individual".

I want to add, I am sure a CI deaf kid appearing on a stage with hearing oral skills, would get a very loud applause by the hearing audience. This is a case of "everyone" accepts success. A kid with worse oral skills, would get loud applause from their caring parents and teachers, and less from others, and even less from most deaf people. This would be a case of a more individual level of accepting this as success.

We should perhaps add a fourth case, the children themselves. According to psyhologists, a large group of deaf children, withouth themselves or the family knowing it, constantly feels unsucessful, 24 hours a day, 7 days a week. Is anyone accepting success here, and in case, who is accepting success?

 

[jillio]

Good point. Agree success can be something "everyone" and "individual".

I want to add, I am sure a CI deaf kid appearing on a stage with hearing oral skills, would get a very loud applause by the hearing audience. This is a case of "everyone" accepts success. A kid with worse oral skills, would get loud applause from their caring parents and teachers, and less from others, and even less from most deaf people. This would be a case of a more individual level of accepting this as success.

We should perhaps add a fourth case, the children themselves. According to psyhologists, a large group of deaf children, withouth themselves or the family knowing it, constantly feels unsucessful, 24 hours a day, 7 days a week. Is anyone accepting success here, and in case, who is accepting success?

I am so glad you chose to bring in the 4th definition of success. Because of the comparative standards these chidlren are provided, they always come up short. This has a negative impact on their self image. Even those with the greatest oral skills will tell of never feeling they quite matched up. This is a subject that should be of great concern to families and educators of deaf children, as these experiences have a lasting negative impact on development.

 

[Buffalo]

(FDA) only issued a warning that are general common involves like meningitis for example, but what about those with unknown effects that are not common? Not all negatives aspects has been reported or shown. It's the truth.

QUOTE]

Cheri, that's simply not true. The very first reference I listed is to the FDA's discussion of CI risks. It goes far beyond meningitis and common risks. It says:

What are the Risks of Cochlear Implants?
General Anesthesia Risks
General anesthesia is drug-induced sleep. The drugs, such as anesthetic gases and injected drugs, may affect people differently. For most people, the risk of general anesthesia is very low. However, for some people with certain medical conditions, it is more risky. More information on the risk of general anesthesia can be found at the following weblink: http://www.nlm.nih.gov/medlineplus/tutorials/generalanesthesia/an079102.pdf

Risks from the Surgical Implant Procedure
Injury to the facial nerve --this nerve goes through the middle ear to give movement to the muscles of the face. It lies close to where the surgeon needs to place the implant, and thus it can be injured during the surgery. An injury can cause a temporary or permanent weakening or full paralysis on the same side of the face as the implant.
Meningitis --this is an infection of the lining of the surface of the brain. People who have abnormally formed inner ear structures appear to be at greater risk of this rare, but serious complication. For more information on the risk of meningitis in cochlear recipients, please refer to FDA's Public Health Notification: US FDA/CDRH: FDA Public Health Notification: Importance of Vaccination in Cochlear Implant Recipients and its Advice to Patients: Medical Device Safety: Advice for Patients with Cochlear Implants: New Information on Meningitis Risk
Cerebrospinal fluid leakage --the brain is surrounded by fluid that may leak from a hole created in the inner ear or elsewhere from a hole in the covering of the brain as a result of the surgical procedure.
Perilymph fluid leak --the inner ear or cochlea contains fluid. This fluid can leak through the hole that was created to place the implant.
Infection of the skin wound.
Blood or fluid collection at the site of surgery.
Attacks of dizziness or vertigo.
Tinnitus, which is a ringing or buzzing sound in the ear.
Taste disturbances --the nerve that gives taste sensation to the tongue also goes through the middle ear and might be injured during the surgery.
Numbness around the ear.
Reparative granuloma --this is the result of localized inflammation that can occur if the body rejects the implant.
There may be other unforeseen complications that could occur with long term implantation that we cannot now predict.

Other Risks Associated with the Use of Cochlear Implants
People with a cochlear implant:
May hear sounds differently. Sound impressions from an implant differ from normal hearing, according to people who could hear before they became deaf. At first, users describe the sound as "mechanical", "technical", or "synthetic". This perception changes over time, and most users do not notice this artificial sound quality after a few weeks of cochlear implant use.
May lose residual hearing. The implant may destroy any remaining hearing in the implanted ear.
May have unknown and uncertain effects. The cochlear implant stimulates the nerves directly with electrical currents. Although this stimulation appears to be safe, the long term effect of these electrical currents on the nerves is unknown.
May not hear as well as others who have had successful outcomes with their implants.
May not be able to understand language well. There is no test a person can take before surgery that will predict how well he or she will understand language after surgery.
May have to have it removed temporarily or permanently if an infection develops after the implant surgery. However, this is a rare complication.
May have their implant fail. In this situation, a person with an implant would need to have additional surgery to resolve this problem and would be exposed to the risks of surgery again.
May not be able to upgrade their implant when new external components become available. Implanted parts are usually compatible with improved external parts. That way, as advances in technology develop, one can upgrade his or her implant by changing only its external parts. In some cases, though, this won't work and the implant will need changing.
May not be able to have some medical examinations and treatments. These treatments include:
MRI imaging. MRI is becoming a more routine diagnostic method for early detection of medical problems. Even being close to an MRI imaging unit will be dangerous because it may dislodge the implant or demagnetize its internal magnet. FDA has approved some implants, however, for some types of MRI studies done under controlled conditions.
neurostimulation.
electrical surgery.
electroconvulsive therapy.
ionic radiation therapy.
Will depend on batteries for hearing. For some devices new or recharged batteries are needed every day.
May damage their implant. Contact sports, automobile accidents, slips and falls, or other impacts near the ear can damage the implant. This may mean needing a new implant and more surgery. It is unknown whether a new implant would work as well as the old one.
May find them expensive. Replacing damaged or lost parts may be expensive.
Will have to use it for the rest of life. During a person's lifetime, the manufacturer of the cochlear implant could go out of business. Whether a person will be able to get replacement parts or other customer service in the future is uncertain.
May have lifestyle changes because their implant will interact with the electronic environment. An implant may
set off theft detection systems
set off metal detectors or other security systems
be affected by cellular phone users or other radio transmitters
have to be turned off during take offs and landings in aircraft
interact in unpredictable ways with other computer systems
Will have to be careful of static electricity. Static electricity may temporarily or permanently damage a cochlear implant. It may be good practice to remove the processor and headset before contact with static generating materials such as children's plastic play equipment, TV screens, computer monitors, or synthetic fabric. For more details regarding how to deal with static electricity, contact the manufacturer or implant center.
Have less ability to hear both soft sounds and loud sounds without changing the sensitivity of the implant. The sensitivity of normal hearing is adjusted continuously by the brain, but the design of cochlear implants requires that a person manually change sensitivity setting of the device as the sound environment changes.
May develop irritation where the external part rubs on the skin and have to remove it for a while.
Can't let the external parts get wet. Damage from water may be expensive to repair and the person may be without hearing until the implant is repaired. Thus, the person will need to remove the external parts of the device when bathing, showering, swimming, or participating in water sports.
May hear strange sounds caused by its interaction with magnetic fields, like those near airport passenger screening machines.

Updated October 15, 2007

Thanks for listing all the CI risks. The more I learn of the CI risks, the more I like ASL. ASL is waterproof, battery-free, dirt cheap and risk-free.

 

[GarnetTigerMom]

I came across this blogging about the reporting both the positive and negative aspects of CI, I think it's very important that people out there including hearing parents of deaf children should be aware of unsuccessful and the complications of cochlear implants, it's not a miracle device that they're thinking deep down in their minds or hearts.


article on cochlear implants

Another interesting links of people who experienced the complications.

reimplantions

Speaking of CI, the sugery don't inplant the CI on the brain, it behind the hear to the cocholear inner ear. I can still go swimming, I can still do lot of fun stuff and normal stuff with CI, Only thing is just remove the processor part that it. So far I have it for almost 4 years and no risk so far. Only negative thing is the batteries life span that it. Each CI have different brands so I don't know how other type of CI models works for others. I am using Med-EL CI which is safe and no problems so far. I have no regret.

 

[shel90]

Good point. Agree success can be something "everyone" and "individual".

I want to add, I am sure a CI deaf kid appearing on a stage with hearing oral skills, would get a very loud applause by the hearing audience. This is a case of "everyone" accepts success. A kid with worse oral skills, would get loud applause from their caring parents and teachers, and less from others, and even less from most deaf people. This would be a case of a more individual level of accepting this as success.

We should perhaps add a fourth case, the children themselves. According to psyhologists, a large group of deaf children, withouth themselves or the family knowing it, constantly feels unsucessful, 24 hours a day, 7 days a week. Is anyone accepting success here, and in case, who is accepting success?

or consider this... on the same stage, a deaf 8 year-old who has excellent oral skills appears on stage and reads off one sentence and a deaf 8 year-old who has absulotely no oral skills at all appears on stage and reads a paragraph. Who will get the more applause?

From my experience, it is the ones who are able to develop oral skills that get the "WOWS!" than the ones who rely on ASL completely. I got all the "WOWS!" simply from just talking alone..no "WOWS!" on any of my other skills so that can send the wrong message to those children.

 

[Bear]

Good point. Agree success can be something "everyone" and "individual".

I want to add, I am sure a CI deaf kid appearing on a stage with hearing oral skills, would get a very loud applause by the hearing audience. This is a case of "everyone" accepts success. A kid with worse oral skills, would get loud applause from their caring parents and teachers, and less from others, and even less from most deaf people. This would be a case of a more individual level of accepting this as success.

We should perhaps add a fourth case, the children themselves. According to psyhologists, a large group of deaf children, withouth themselves or the family knowing it, constantly feels unsucessful, 24 hours a day, 7 days a week. Is anyone accepting success here, and in case, who is accepting success?

hmm you made me think of something new and you would be right. I never really stopped to think about that. And I am one of the CIer's that is all for getting all the info out there.

Wow! Just never really thought of it this way. Thanks for giving me something new to think about.

 

[flip]

or consider this... on the same stage, a deaf 8 year-old who has excellent oral skills appears on stage and reads off one sentence and a deaf 8 year-old who has absulotely no oral skills at all appears on stage and reads a paragraph. Who will get the more applause?

From my experience, it is the ones who are able to develop oral skills that get the "WOWS!" than the ones who rely on ASL completely. I got all the "WOWS!" simply from just talking alone..no "WOWS!" on any of my other skills so that can send the wrong message to those children.

Fortunately we have gotten a relative large deaf population with very strong ASL awarness compared to the past, those will applaud the slightest attempt from children to do some beatiful true classifier signs with neat face expressions

 

[flip]

hmm you made me think of something new and you would be right. I never really stopped to think about that. And I am one of the CIer's that is all for getting all the info out there.

Wow! Just never really thought of it this way. Thanks for giving me something new to think about.

Yeah, getting out all the info is the best! That's why I now and then read information coming out from the oral gang and listen to my friends with CI as well as the ASL professors.

 

[DeafMom22]

Twists and Turns Article

Hi all,
I'm the blog author in question and the article was indeed printed:

Hands & Voices :: Articles

 

[vallee]

Hi all,
I'm the blog author in question and the article was indeed printed:

Hands & Voices :: Articles

Thank you for the link to the web site and organization. I notice you are the director of Parents/Deaf Adults for this organization Hands and Voices. Has your article been published in any professional literature? Also do you have an current numbers of cochlear implant failure and successes. I would love to see any current data to go along with your article.

It was very interesting.