Call for info about CIs

Greetings all

over in an earlier never ending thread at People of the Eye (latest count for comment entries is 444) there has been a lively and ongoing discussion about Cochlear Implant (CI) safety, ethics, investigation etc

https://handeyes.wordpress.com/2010/11/24/sonovas-shares-shake-and-ag-bell-quakes-or-rattles-and-rolls/#comments

It began due to the Advanced Bionics announced recall on Nov 23 of their HiRes 90K due to some hot failures but the thread advanced and meandered and covered lots and lots of stuff

Joseph Pietro Riolo brought forth some good ideas for some important studies re: CIs and has kindly allowed for us to repost it here in the hopes that a focused discussion of these ideas will ensue.

Thank You Joseph.

Posted by Joseph Pietro Riolo on December 11, 2010 at 6:15 pm edit

I totally agree that it would be great to have a systemic, consistent collection of incidents relating to the failures of cochlear implant so that we can have the total picture. No incident should be dismissed or trivialized, no matter how small it is. However, it is easier said than done. Just imagine how much time, effort and money are required for the enormous task of collecting, documenting and analyzing the information. I will mention three ways of getting information to see how much work each requires.

1. Encyclopedia of incidents. This is somewhat like Wikipedia where each incident has its own page. Each page will explain the incident in details that can give any reader a complete picture of the incident. Then, an analyzer is needed to assign the correct taxonomical (or categorical) code or name to each incident. Problems with this method: People with cochlear implant that fails or that does not work need to be found and once found, they may not be willing to share their experience. It will be difficult to maintain their total privacy if they ask for it. Taxonomy needs to be developed. Analyzers need to be trained so that they can assign right code or name to each incident. Software needs to be developed to collect data and create statistics based on it. There has to be a group of people who must maintain the information on a secure server and protect the integrity of the information. Information needs to be maintained not just for few months but for many years. No matter how much information there is in encyclopedia, it will be always one-sided because no information about the success of cochlear implant is collected.

2. Snapshot of incidents. One way to get a snapshot is to invite all people with cochlear implant to questionnaire. Then, the researchers can analyze the information and provide a snapshot of the non-working cochlear implant. Problems with this method: Questionnaire needs to be developed. Very large number of people is needed to make this successful. For example, if there are 100,000 people with cochlear implant, the study will need at least 10,000 people (10%) to fill out the questionnaire. They would expect total privacy and making sure that no person fills out questionnaire more than once is difficult. Then, there is a problem with sample bias. How can it be assured that the sample is spread over the population equally? Protection of confidential information about them is very important and it will be costly to protect the information. Although this approach can give a good idea of the ratio between success and failure, it is still just a snapshot. The snapshot may lose validity or relevance few years later. So, this study has to be done annually which brings me to the next method.

3. Longitudinal study of incidents. This is same as the previous method but it is done every year. The researchers will be able to measure the changes from year to year. Problems with this method: It will be difficult not to lose any people from each cohort every year. People in the study need to remember to inform the researchers when they move so that they can receive questionnaire every year. Whenever a person forgets or does not want to fill out a questionnaire, a link is broken and it may be discarded. This in turn reduces the sample size which is not desirable. Every year, new people are needed for the study. Questionnaire needs to be developed very well so that it will remain consistent over years. Confidential information needs to be protected at all costs. Storage and integrity of information must also be protected. Very large sample size of new people is needed for every year so that in case some people choose not to participate in the study, the decrease in sample size will not have any adverse effect on the statistics.

As I wrote above, it is easier said than done. Someone or a group of people has to do it.

Joseph Pietro Riolo
XXXXX (email X out here cuz sometimes it creates spam to the blog but u can check Joseph’s comments for his email address)

Public domain notice: I put all of my expressions in this post in the public domain.

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37 Comments (+add yours?)

  1. Dianrez
    Dec 12, 2010 @ 21:30:22

    This video by a young man who had his CI explanted very recently gave me pause for thought.

    In the narrative, he says that the doctor told him “green mold was found growing inside the metal plate.” While this gives more a graphic idea than details, it should make people consider the effects of foreign bodies inside the human body.

    Questions: is there a fail-safe system designed to minimize this, and if infection happens, is it accurately diagnosed and treated promptly? Are CI’s made of materials that discourage growth of unwanted bacteria?

    How often does this occur? Are we getting facts about each explanted device such as presence and nature of this “green mold”? Are there studies correlating this to symptoms most often reported–headaches, dizziness, etc.?

    An investigation should be complete enough to include all such occurrences and investigation of each explanted device for clues as to what went wrong.

    Also: of the many explanted devices from the past 25 years, why was this the first time we have heard about biologic growths inside it? Was this information suppressed in the past and we only hear about it from one patient because he posted it?

    Infections associated with different types of surgical implants are common. This is one of many references brought up on a google search:
    http://www.nejm.org/doi/full/10.1056/NEJMra035415?hits=10&andorexactfulltext=and&FIRSTINDEX=320&FIRSTINDEX=320&SEARCHID=1&searchid=1&COLLECTION_NUM=51&resourcetype=HWCIT&resourcetype=HWCIT&andorexacttitleabs=and&

    What should be of concern is that it is usually difficult to get CI’s removed–insurance will not cover it, the manufacturer will not cover it, and so on.

    The young man in the video hints at another reason: the explantation surgery took THREE hours. One has to wonder how extensive the surgery had to be…and why. Obviously the longer the surgery takes, the more risk because of the length and amount of anesthesia, the exposure of internal structures to infection, among other considerations.

    I’m relieved that this fellow came through it and is fine now. I keep thinking of other people who not only had devices removed, but new ones inserted, some three or four times. Each time doesn’t make it any easier or less risky.

  2. Dianrez
    Dec 12, 2010 @ 21:37:20

    Sorry, forgot the link to the fellow’s narrative of his explantation surgery:

  3. Candy
    Dec 13, 2010 @ 00:36:56

    First off..

    I support JPR’s idea.

    Question I have right now: Is Patti trying to compile all the information right here on her blog? Call for info about CI seem to indicate she is doing this on her own. If so, that’s not part of what JPR suggested. Anyone who has an invested interest in CI will know what questions to ask to ensure that information is not missing.

    When gathering information, the information has to be credible. And, how does one determine whether it is credible or not? Take for instance, this “green mold on metal”. Exactly what did the surgeon found? It would be nice if he could provide documentation on what the surgeon said about that “green substance”. At this point, we don’t know if the interpreter misinterpret or not. Also another thing, we need to know exactly what kind of implant did he have, all the details. Also, when he was implanted. Without all of that, the information this deaf guy provided isn’t really credible YET.

    Something to consider.

    At this point, it would be awesome if we can brainstorm how to get an impartial information gathering entity on every incident of CI, especially by those who have vested interest in CI. I do agree with what Ann_C suggested in the other thread. I think it is sound.

  4. Candy
    Dec 13, 2010 @ 00:47:52

    Another information, green fungus inside the ears are not uncommon. It has happen to people who do not have CI. Need to take that into consideration also. This is what I mean, about gathering information. I think information gathered need to be done by someone with medical knowledge. I wonder if hospitals or CI teams are doing that already?

    http://www.medhelp.org/posts/Ear-Disorders/Green-fungus/show/467183

  5. John S.
    Dec 13, 2010 @ 00:56:26

    Dianrez,

    Abour the video, that involves 2 ideas that my professors have said in different classes – 1. the higher up on the human body something is and the closer to the center it is the more complex it is and the less that is *factually* known about it; and 2. the more we know the more we know that we don’t know. I’ve posted these ideas in a different forum a while ago. The time-span is irrelevant in that these ideas seem to be truthful.

    There are 3 things that hospitals need to do constantly – 1. clean, 2. clean, and 3. clean. It makes sense that there is a constant need for this because people go where when they are sick? The hospital! Either on an inpatient or outpatient basis. Further, should non-patients visit a hospital they too bring germs with them. Therefore, the constant need for cleaning. Mold is a result of the germs that are either there or come in.

    A fail safe system to ensure that there are no germs with CIs is to stop the whole idea and process of implantation. 😉

    The lack of information about biological growths may be due to placing the responsibility for it on something other than the actual source. There is the opinion in the medical field that negative effects of an item and/or procedure is due to something *other than* the actual source. Especially if assigning source means that the medical profession has erred in diagnosis and/or treatment.

    Correct, the complicating factors need to be held accountable when considering causation. I am saddened that some have fallen victim to the procedure to remove the CI. Especially when this has occured multiple times.

  6. handeyes
    Dec 13, 2010 @ 01:23:42

    re: the green fungus link above

    pls click it and see they are talking about the ear canal and not the inner inner inner ear / cochlea area

    it is unfortunate that some folks have to undergo explantation surgery

    i know of several folks who no longer have a working CI (internal device broke many years ago) and they dont want a new one so their doctors have advised to just leave it in because removing it is a bit harder than insertion at times and cuz as we already covered all surgeries carry risks

    peace

    patti

  7. DeafSweetMind
    Dec 13, 2010 @ 02:10:39

    The CI companies are just plain greedy and dirty moneymakers. Therefore they owe it to us Deaf humanity and the Deaf community. CI devices should be banned immediately, so be it. CI is a very dangerous device and I have had said it since 1999.

    Scoffs! Now I have my reason to be so angry; after all they abused God’s word from the Bible. CI doctor are using it against us and our being deaf with their negative biblical quotes. They have no morals. After all, the CI doctors insulted many Deaf / Hearing people’s own religious beliefs. Guess what? The CI companies/Medical companies are evil and satanic.

    It’s actually from CI device as I have had said it all along. However many CIers denied that and lied to me. How nice of you to destroy your own Deaf humanity and the Deaf community. That even makes me so damn angry after all those years that I was doing the right thing to fight against CI.

    Those devices are not even made in this country! Therefore, they lack the quality-control that is here in this country. Also, there is no way to get compensation from the manufacturer.

    You knew it all along. Why are you keeping so secret for so long after all Medical/CI companies knew what’s going on? How cruel those bastards are to abuse and hurt our Deaf babies/children’s health to be suffering for nothing. This is especially true for those kids who died for nothing.

    Thank you for rejecting or try to stop me in a very quiet way for a long time. Sighs! LEAVE DEAF BABIES AND CHILDREN ALONE now. That is a child abuse all along so be it.

  8. DeafSweetMind
    Dec 13, 2010 @ 02:11:44

    It s same thing for air conditioner or heating or havoc mold problem that is more similar that relates to CI device itself.

    There is mold everywhere! … it cannot be avoided … however, there is no need to make it worse with a CI. Thank you!

  9. handeyes
    Dec 13, 2010 @ 02:54:13

    DeafSweetMind

    we are aiming for discourse here – not beating folks over the head with past resentments or accusations of YOU, YOU, YOU mind you ; )

    if u have been working to get TRUTHFUL information out to the public about CIs since 1999 – what has been the fruits of your labor?

    re: CIs being manufactured in foreign lands – really? where?

    thanks

    peace

    patti

  10. DeafSweetMind
    Dec 13, 2010 @ 03:42:30

    Currently ****(as of 2007[update])****, Currently (as of 2007[update]), the three cochlear implant devices approved for use in the U.S. are manufactured by Cochlear Limited, Australia, MED-EL, Austria and Advanced Bionics, US
    . In the EU, an additional device manufactured by Neurelec, of France is available.

    . In the EU, an additional device manufactured by Neurelec, of France
    is available.

    I put the asterisk to emphasize the update. Here you go – http://en.wikipedia.org/wiki/Cochlear_implant that shows that CIs comes from other countries.

    mold thing – http://www.google.com/search?q=molding+in+CI+device&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a You can look several ideas of what s mold causing?

    Also, matter of fact, it’s true for all Deafies and parents of Deafies. So be it. Sighs! That is too bad too because like we discussed in DN, other sites, and their blogs it that has been destroyed by their audist and dysconsicous audist attitudes. Many people are rushed into CIs. Also my original blog was shut down by wordpress.com that didnt give me a chance to get on more informations in it as I refused to get new blog at all after they asked me to make second new blogs after I realized I could not get my freedom of speech with my responsibility. I am not going to waste my time and energy to do the hardwork to start all over again. No thanks! Also I lost everything that I had saved in my computer however it crashed or damaged the computer that I had before.

    That is so tragic after we tried to educate and helped them to be aware of what’s really going on. Jeez! They didn’t give me a chance to get further. After all, I was banned/ blocked/ removed by them. So what’s your point?

    So what do you want from me?

    Thanks!

  11. Candy
    Dec 13, 2010 @ 03:58:18

    Here’s this discussion about Walter Lowell, apparently he got his implants a long time ago, when he was 11. His implants didn’t work, the first one had a crack. My guess, based on the scar itself, I would say he was one of the earliest implantees way back then. Perhaps in the early to mid 80’s. He never had any training, looks like it. I think best bet is to get more information directly from him. But…do view the discussion and his earlier video.

    Anyway, I think I’m done with this thread. It has become a fodder of some sort, really.

    JPR’s suggestion is not going to work in this thread. And, I don’t think JPR had that in mind, to have information gathered here on this thread.

    http://www.alldeaf.com/hearing-aids-cochlear-implants/49173-cochlear-implants-he-said-not-worth.html

    http://www.alldeaf.com/hearing-aids-cochlear-implants/49173-cochlear-implants-he-said-not-worth.html

  12. Tim V
    Dec 13, 2010 @ 05:54:22

    DeafSweetMind:

    You know, I feel for you. It looks like you have a lot of anger and resentment against those CI companies and by extension the audist systems. Problem here is that bitterness and resentment probably will hurt you far more than it can ever hurt the companies you are aiming to bring down.

    “Fear leads to anger. Anger leads to hate. Hate leads to suffering.”
    Jedi Master Yoda

    Now must do everything in our power to stop wrongdoers legally so nobody else gets hurt down the road. But we must not allow bitterness to cause us to hate anybody. That will only turn people away from our cause, leading to more division, and even further suffering. What is in the past is done, let it go, forgive them for they know not what they are doing. Often people truly do believe that they are doing good work. Let’s focus on what we can do — we can do is to consistently reach out in love with the facts and never lose hope that eventually the key people will hear it and take the appropriate actions.

    Candy: I read this post as Patti trying to put together more concrete ideas on how to get studies done that everybody can get behind. At the very least, the Deaf, the parents of deaf children, the CI users, and so forth. I don’t really care too much about the CI companies wish beyond that I think they deserve a fair study.

    If you don’t mind, I’d like to put the green mold thing aside. Our goal here is to figure out:
    1. Some specifics on what the studies should look for and how.
    2. Who should conduct it.

    Posting anecdotes is a distraction towards that goal, even though anecdotes ARE important at individual levels since every individual are important, no matter how small.

    I’m also wondering what studies are already out there?

    I think the FDA could maintain an adverse/incident database related to CI. I wonder if they already do this, but things are not categorized. This is JPR’s idea #1.

    I noticed that JPR didn’t list anything related to anything that AFA would like to do. Personally, I think AFA’s idea is out of the scope of the FDA. I can see the basis for somebody doing some sort of study that tries to assess each modality’s income level at say age 30, education level, and the rate at which each group winds up on SSI/SSD. I’d like some sort of test to measure English language proficiency. I’d also like to have some sort of data point to assess the parents (do they have deaf parents, for example). Such a study should include an assessment of the mental well-being of the subject, perhaps by a questionnaire designed by a psychologist. By the way, it doesn’t *have* to be the same study that looks into all that (that is a lot of data to gather). However, keep in mind that if we can combine a few data points into the same study, it can help us ferret out confounder in some of the regressions we discover.

    One inherent problem with all of these studies suggested is that it would be observational in nature, not experimental. That means that each regression is a ground for forming a hypothesis, but *cannot* by itself prove that if we were to change a certain variable, then it would result in the result we are looking for. Part of the reason why I commented about parents in my prior statement is that parents are probably a huge confounder, and one I’m not sure how to adjust for.

    -Tim

  13. Candy
    Dec 13, 2010 @ 14:59:45

    Tim…

    I’d like to know what YOU Know. Such as how long have you been online in the deaf blogosphere? Are you aware there are studies on spoken English proficiency. There is a CI circle forum for parents of children loooking to get CI and those that already have CI. I know someone who is part of that group, and these parents give each other support on everything imaginable. It’s not like there’s nothing out there, there are plenty of information and studies out there. The ASL signing community who are anti-CI just don’t like that the stuffs they see are all rosey.

    The relationship between the parents of children with CI and the “Deaf Culture” (the fanatical anti-CI) are not great.

    Have you ever read many of the information that was on Cochlear Implant Online? How about many of the blogs on Deaf Village?

    When I saw JPR’s suggestions, I took that to mean other entities that are willing to take up one of the three that JPR proposed. Otherwise, I see what Patti is trying to do on this thread a fodder.

    When you said ‘studies’ I thought, oh..I’ve seen plenty of them. So, this is why I’m asking you where you’ve been online.

  14. DeafSweetMind
    Dec 13, 2010 @ 15:33:47

    Tim – You know what it s obviously that you are judge me in a very wrong way and I thank you for it. My huge motivation is by LOVE that you need to see who I am or how the way I am. If not, then it s your loss not mine.

    I have the love for Deaf babies/children, and Deaf people as whole. My bitterness and anger are justified because Deaf humanity as Deaf babies/children and I have suffered for many years. However, my goal is not to spread bitterness or hatred, but to fight fiercely to protect the next generation of Deaf babies and children from what I suffered.

    For your info, This is crapola from Jedi Master Yoda is from the movie “Star Wars”. IOW, it’s not connected to the real world if you mind. Thanks! *SMH* it reminds me of someone who just like you. For pete s sakes! Other people *may* believe they are doing good work but if they aren’t then their work is harmful. The green mold thing is real. If you mind, It had been going on and on for years that they are not being honest with us about the infection that what it s causing from. Mind you! I knew there is something inside CI device that is very dangerous from what I dont feel right about it as far as I saw my strongly observation from my own Deaf eyes in 1999. We can’t “put it aside”so I m not ignorant or being so stupid for not noticing anything. Thanks!

  15. John S.
    Dec 13, 2010 @ 15:50:15

    Tim V,

    Having anger and resentment towards CI companies comes from their attitudes and actions which have resulted in the harming of innocent people, esp. children and babies. These victims did not make the choice to harm themselves; the choice was made by someone else.

    Your quote from Jedi Master Yoda is from fiction; therefore, it has little relevancy to the real world. If this was a philosophy class then it might be appropriate to bring it up but it *still* would be fiction.

    Correct, what is done in the past needs to stay in the past … sort of. When what is done in the past continues into the present it is relevant to fight it. It furthers harmful attitudes, opinions, and actions. The present is influenced by the past and will have an influence in the future. One cannot distinctly separate the time continuum.

    The “green mold thing” cannot be ‘put aside’ when it is directly and concretely relevant to the issue. It is part of the cause-effect of implantation; therefore, it deserves full attention.

    Anecdotes are relevant in that they may be a guide to the research that is available. Human beings are not labratory animals; therefore, anecdotal evidence is a stimulus to research.

    The FDA may maintain a database; however, individuality is lost in statistical analysis. This is another reason why anecdotal evidence is vital.

    One principle of research is to “use more than one assessment more than once”. This will give a more generalized and relevant picture of where the person is. However, one issue that needs to be dealt with is that for the most part available assessments measure verbal skills more than other areas. There are very few non-verbal assessments.

  16. DeafSweetMind
    Dec 13, 2010 @ 15:55:03

    It is my strongest love that motivates me to fight hard to protect babies and children who need to be loved and accepted E X C A T L Y for who they are. Deaf babies and children are DEAF and that is a great gift for their own natural abilities to be useful. I think it s so wonderful that we are being so different from you. 🙂 Deaf power is more of empowerment for us, Deaf people with a very positive outlook to share and educate others in this whole society that they can change for the better attitude soon or later if they are willing to accept it first. Thank you! Have a Happy Holidays!

  17. handeyes
    Dec 13, 2010 @ 17:39:03

    aw are we dissing YODA now

    crud!

    i love Yoda – most especially his grammar and his philosophy

    i could do without the fighting but since its fiction….

    we r getting way off point aint we folks huh?

    we were supposed to talk about Joseph’s IDEAS and CONCEPTS

    and maybe generate some new IDEAS and CONCEPTS

    i think its pretty clear we got some PRO-CI folks and we got some ANTI-CI folks in our midst

    there is not resolution to be had there folks

    that is just gonna be forever and forever more a tug-a-war

    what i would like to return to is FACTS and CONCEPTS and IDEAS

    re: scope of the FDA – medical ethics does fall under the FDA

    i have no problem with folks preferring a different petition than AFA’s but i would call upon you to MAKE what u believe is a just, right, and good petition

    While it is probably that the FDA might not be able to establish an independent investigation to cover all the parameters that AFA is asking for – that should not stop folks from signing the petition

    u dont refuse something because u feel it is unlikely

    remember Obama was said to be unelectable

    jump at de sun folks

    and play nice

    “tread carefully, feelings are everywhere”

    we can listen and see better when folks come from love – even if it is being firm with love

    thanks

    peace

    patti

  18. Tim V
    Dec 13, 2010 @ 19:28:13

    Hey, folks…I realized what I said could have been taken totally the wrong way when I woke up this morning, and came on to check, but didn’t see any response until just now. Please accept my apology for it. I’m by no means saying that I know what is really going on in other people’s hearts or minds. Each of you need to decide that for yourselves.

    I also agree that Yoda is fiction — I don’t even agree with the quote I made entirely. It doesn’t quite account for righteous anger, which I think is a topic that I did not completely account for in my comment. Come to think about that, that isn’t even the topic of this thread.

    Candy: you asked where I’ve been online. I haven’t necessarily been reading a whole lot on deaf blogsphere. I’ve been watching vlogs more often through youtube. And I’ve been learning a lot since…around March of this year. Candy, I’ve even been on your site, and commented there I think in April or so.

    I think this is a bit sad because, really, I don’t see anything concrete getting done here…yet.

  19. Candy
    Dec 13, 2010 @ 19:41:38

    Tim..

    What I thought. Okay, allow me to share something with you. There are LOTS of information shared by parents of children with CI on many of the sites in both DeafRead and DeafVillage. Probably a lot more in DeafVillage. There are many studies shared on Cochlear Implant Online. http://cochlearimplantonline.com/site/

    Be sure to also check out aslci(dot)blogspot(dot)com

    I can list many more blogs, many with studies shared.

    Tim..

    I don’t think you did anything wrong and that Yoda quote, I believe was taken out of proportion too. I like Yoda. 😉

    Beleive me, DSM never elaborated how she was affected by this. My suspicion is that she grew up in the oralism of days old and that is where her anger is coming from. She never really elaborated so, I think she is lying. Like, how did CI affected her? She just hates oralism. So, she is biased.

    Outta here..

  20. Tim V
    Dec 13, 2010 @ 19:47:47

    Oh, Candy, I’ve been to the ASL+CI blog too. I’ve also watched all of Raychelle’s vlog series on CI.

  21. Candy
    Dec 13, 2010 @ 20:19:01

    Raychelle’s videos are worth watching, yes.

    Here’s one more link for anyone to look at. Do click on the links within the site.

    http://clerccenter.gallaudet.edu/Clerc_Center/Information_and_Resources/Cochlear_Implant_Education_Center.html

  22. Ann_C
    Dec 13, 2010 @ 23:40:58

    Ah, I see Candy’s point about who is gonna be collecting this info.

    First of all, like jpr suggested, a trained statistic analyst would have to set up a blogsite (along with a secured server) that provides a standard form so that adverse incidents can be reported by CI recipients and then be catalogued by the analyst. An encyclopedia of adverse events can then be compiled by a software program designed for the purpose of this project.

    Actually we have to back up even further than jpr’s #1 suggestion here. Since such an investigation is long-term and likely to cost (taxpayer) money over a period of years, it will require impartial oversight by a party that has no vested interest in cochlear implants but whose directive involves public health. The FDA is the agency involved in the safety of the public health’s use of drugs and medical devices. On the FDA website there is a Medwatch page that reports adverse events (AB’s HiRes 90k model failures have been reported on it). The FDA is responsible for placing warnings on drug and medical device usage.

    In order to call for this kind of impartial and independent investigation, consumers will have to appeal to their Congressmen to create funding and oversight of such a project.
    NAD, HLAA, and other deaf/hh related organizations have lobbyists who can also lobby for a bill to create this project. That’s really where this project has to start first.

    Some commenters are going off track here, off what jpr suggested, by suggesting what are sociological studies of CI usage. This part has nothing to do with adverse PHYSICAL events and is not part of the FDA’s work. That would have to be a separate undertaking, probably under the aegis of the U.S. Department of Health and Human Services (HHS).

  23. handeyes
    Dec 14, 2010 @ 01:41:39

    Tim – thank you for your apology. i know it aint directed at me as u did no offense to me but i wanted to thank u all the same as it shows that u put good thought and heart into what u r bringing the the table in this thread

    i thank u and hope u will be back – i appreciate much of what u have to share and say

    DeafSweetMind – i forgot to thank u for citing where the CIs are made

    it is interesting to note that the one that has had the most recalls is the one that is made in the US of A – Advanced Bionics

    I called Advanced Bionics and asked if their parts were made in another country and sent here etc and they said some parts were made in other countries and some made here and then they were put together here in the US.

    i asked if there was any update on the HiRes 90K recent recall since the first announcement and they said no updates

    so they did not point me in the direction of the pdf that The Hearing Blog kindly uploaded – click ab_eu_recall
    http://thehearingblog.com/archives/65/ab_eu_recall nor did they mention the need of an audiologist to perform an integrity check on a child while under general anesthetic due to the severe pain

    i also called Cochlear Americas (which is based in colorado but is a US branch of the Australian co.) but was put on hold for a million years and finally i gave up. will call another day. just curious if they are manufactured in Australia and shipped to the US or if parts come in from here and there and some made here and then put together here

    so to answer candy’s question – yes yes i can see u already ready to jump and ask / imply / suspect / finger point at me – why am i so bloody interested and asking all these quest i ons?

    for u girl and for the gentleman up up above who had to get his removed and for me pal who has chronic blinding headaches but they cant do an MRI because she has the older CI that the magnet went deep with not like the newer models where the do a quickie surgery to remove the internal magnet so they can go into the mri trouble free

    and cuz….. i care

    and cuz….

    “If you are neutral in situations of injustice, you have chosen the side of the oppressor. If an elephant has its foot on the tail of a mouse and you say that you are neutral, the mouse will not appreciate your neutrality.”
    Desmond Tutu

    no blinds eye. there are some problems with CI – they are not perfect and they are not perfectly imperfect

    we be aiming for the truth

    knowledge is power

    and….

    a person’s a person no matter how small (horton hears a who)

    and …

    “UNLESS someone like you cares a whole awful lot, nothing is going to get better. It’s not” (the lorax)

    re: getting NAD, HLAA, AG Bell Assoc to come together to call for an investigation – cool

    heye the Deaf and Hard of Hearing Alliance (DHAA) ????

    someone wanna draft something for these groups to share here for our input?

    peace

    patti

  24. handeyes
    Dec 14, 2010 @ 02:02:17

    i also think a letter writing campaign to congressional representatives is a good idea

    anyone wanna draft that?

    in the meantime – for folks who are in agreement with the general premises of the AFA petition (knowing full well some wont be incorporated into the indep investigation for a variety of reasons) – feel free to sign and circulate

    http://www.petitiononline.com/AFA62509/petition.html

    peace

    patti

  25. Dianrez
    Dec 14, 2010 @ 02:19:32

    The first phase of this endeavor could begin with the letter to NAD, AGBADHH, etc. In this letter the first part could touch on emerging mentions of details not described before, and a statement that a voluntary reporting system is not gathering it all. Also apparent corporate deviance as shown by kickback reports, delayed recall, excessive profit. (Questioning the relationship between AGBADHH and major manufacturers perhaps would be inadvisable at this time.)

    The second part could touch on JPR’s statistical model for investigation and state that a complete analysis of the past 10 years of implantations is needed in view of the exponential growth of the devices.

    Aside: it is common for industries to make settlements with confidentiality clauses made as part of the agreement. How do we obtain information on the number of that probably were made? Possibly there is no way.

    This shouldn’t be regarded as a smear campaign to discredit the CI as one of the treatments for deafNESS; but a drive to obtain a true picture of its pros and cons. The answers may turn out be even more reassuring than the industries already are conveying. If not, people have a right to know before they consider it.

  26. Dianrez
    Dec 14, 2010 @ 02:24:49

    The petition link above is an AFA one that includes social and cultural issues; I believe a separate petition that mentions just the medical effects and clinical follow-up would go over better with the d/hoh sector of the population.

  27. Larry
    Dec 14, 2010 @ 04:08:34

    Oralism leaves deaf children behind in our society

    Years ago, a friend of mine told the story of his son’s birth. He recalled the doctor somberly gave the news that their son was deaf. The doctor was astonished when the parents hugged and rejoiced. They explained to the befuddled doctor that because he was deaf, he would be able to fully share the culture and language of his parents.
    Quantcast

    The doctor then added their new, perfectly healthy boy could be fixed through cochlear implants.

    “Thanks, but no thanks,” they replied firmly.

    Alarmed, the doctor insisted they were doing great harm and sternly lectured about potential speech and language delays. Undaunted, they proceeded with no implant.

    Without an implant, his son is now fully immersed in deaf culture, understands American Sign Language fluently, reads at grade level English and acts mischievously as any young boy.

    A cochlear implant is a device which is surgically attached to the cochlea. It bypasses the outer ear and transmits sound waves to the brain through a processor which is worn outside the patient’s head. An implant works where neurosensory hearing loss eliminates the effectiveness of the most powerful outer ear hearing aids.

    Cochlear implants can be a substantial blessing for those who are postlingually deaf. After Rush Limbaugh went deaf, implants helped him regain his hearing and, love or hate him, continue his broadcasting career.

    A candidate for a successful implant has a strong language foundation and wants to hear again. However, using implants in prelingually deaf children with no language foundation has created a firestorm of controversy pitting deaf culture against the audist opinions of medical and educational professionals.

    Today, one out of 10 deaf children has cochlear implants. In 15 years, this is expected to rise to one out of three deaf children. Many doctors push parents of deaf children toward implants and oralism, insisting, despite the oxymoron, the best path is teaching a deaf child how to speak. The benefits of using American Sign Language as a method of communication are usually omitted or discouraged.

    Those in support of prelingual implants insist the decision should be no harder than deciding to buy glasses to correct vision problems. Playing on the fears of distraught parents, doctors often fail to mention the enormous costs, years of commitment for speech therapy and frequency in which implants simply don’t work. The reality of longitudinal success rates for prelingual implants remains inconclusive and unimpressive. Further, the FDA recently warned that implanted children are more likely to develop several medical complications including bacterial meningitis.

    Despite these unresolved issues or input from the deaf community, medical science continues to brainwash government leaders regarding prelingual implants and unproven speech theories. The deaf view this as an extension of the historic battle with Alexander Graham Bell.

    Prior to Bell’s forcing oralism into deaf education, students flourished. William Gallaudet (moderator note – name should read Edward Miner Gallaudet) and others proved that American Sign Language has a vital role in language development and early deaf education. Bell, who detested Gallaudet, abused his power to systematically eliminate sign language and promote his version of oralism.

    Two hundred years later, Bell’s approach hasn’t lived up to its hype. Increasingly, statistics show how oralism continues to leave deaf children behind. Despite the piling negative evidence, oralism thrives among hearing professionals as the model for deaf rehabilitation.

    The deaf community continues advocating against prelingual implants. However, their pleas have, ironically, fallen on the deaf ears of oralist professionals who refuse to change while continuing to ignore the deaf community’s opinion. In order to create an ethical solution, the oralist rationale, which drives the increase of prelingual implants, must include deaf cultural perspectives and eliminate audist practices.

    Stephen Roldan, a member of The Olympian’s Diversity Panel, is statewide coordinator of deaf services for the Division of Vocational Rehabilitation.

    He can be reached at roldasj(at)dshs(dot)wa(dot)gov (note: modified to avoid spam in this blog)

    http://www.theolympian.com/2010/07/30/1320201/oralism-leaves-deaf-children-behind.html

  28. handeyes
    Dec 14, 2010 @ 12:26:19

    Larry –

    i have modified the above post by Roldan so that the email address has (at) and (dot) to reduce spam

    and i made a correction of the name William Gallaudet – it should read Edward Miner Gallaudet

    Peace

    patti

  29. handeyes
    Dec 14, 2010 @ 12:26:47

    Dianrez – would u like to draft something?

    peace

    patti

  30. handeyes
    Dec 14, 2010 @ 12:42:59

    heye all

    i try to routinely check my spam folder in this blog because seems some things trigger the blog to hold up comments –

    2 comments were in spam for this thread – one by DeafSweetMind (no idea why in spam except maybe the smiley icon sometimes triggers that? and other times doesnt) and one by Candy (2 links maybe routed it to spam)

    regardless – they are now up above – dec 13

    DeafSweetMind – thank you for the warm Holiday wishes

    Candy – thank you for the links

    peace

    patti

  31. John S.
    Dec 15, 2010 @ 00:44:58

    Larry,

    Thank you for a thought-provoking post. Having read it there are a few points/reactions I’d like to share.

    Many doctors do not understand what the Deaf community is all about. Many see deaf as a “hearing loss” with an emphasis on ‘loss’. As a result they do not understand the Deaf community from either a factual nor an emotional basis. They often are not aware of the positive emotion that comes from group identifacation and from associating with those with similar views and/or experiences.

    I’m glad that the son is living a full life without an implant. This is an example of what happens when positive vibrations come about by having a person live their life fully.

    One thing about cochlear implants is that they do not work for all deafies depending on the type and level of deafness that they have. And it’s unpredictable what will happen to the person who is implanted. To me, this is unacceptable. This makes the whole process and device nothing but a gamble. Further, there are some deafies (myself included) who do not see a need for this whole charade. Yes, it *is* pleasing to some parents and/or others. But is this a reasonaable objective? I think not.

    A person having a language foundation already makes the device unnecessary. If language skills already exist then what is the goal of the device? If language skills do NOT exist yet how will the device help considering the fact that the adaptation by the person uses their cognitive skills (which obviously have nothing to do with a CI).

    Comparing a CI with glasses is an oversimplifacation and an incorrect comparison. Glasses are not surgically attached, have no danger to the individual (especially considering the use of plastic lens), if they are lost can be replaced easily, are chosen by the individual, etc…

    Implanting a pre-lingually deaf child is assuming that deafness is physically and morally incorrect. Both of which are erroneous assumptions. In a way, this is making the assumption that anything that is medicallly incorrect (or “different”) is unacceptable and needs to be corrected. Further, the assumption is made that instead of dealing with what has been percieved to be “incorrect” it needs to be surgically altered. This is negative and is conformist.

    Oralism is not a proven means of doing much. 😦

    One onjection to the whole idea of CIs is that science and/or medicine does not deal with human beings. As human beings being Deaf, Blind, or anything else is imaterial when compared with our ability to contribute to the greater whole – as a human being, not as a machine.

  32. deafa
    Dec 15, 2010 @ 14:53:33

    <<<<>>>>

    What’s sadder is people attitude of “too bad, so sad” for these people who are not success in CI. They tell these kids they are the one with disability so they are the one who have to deal with isolation. First they tell parents not to sign to these kids or they won’t implant. Now these kids don’t anyone to sign with because more hearing parents are opting not to add sign language especially out of fear that their doctor won’t implant unless they promise to take the AVT route. yep, they are being pushed all the way to the bottom.

  33. handeyes
    Dec 16, 2010 @ 03:52:42

    John s and deafa – thank you for sharing your opinions

    re: raychelle’s vlogs on CI – i thought the one about “dont look at folks differently just cuz they have a CI” is very important

    folks should NOT be judged by the color of their skin, what language they use, what socio-economic class they come from, what they have behind their ears, what gender they are, what loves they have, what….. but rather by the content of their character

    the other thing that is stricking to me about Raychelle’s vlog is she has a vested interest in that she has a Deaf sister who has chosen CI for her child and they had a Deaf mother who gave them ASL

    so we see some Deaf folks of Deaf parents or who have become Deaf parents themselves choosing CIs and perhaps at times not recognizing that the majority of parents selecting CIs will not be passing on ASL to their children – that they Deaf of Deaf or Deaf creating new Deaf and choosing CIs do not represent the majority of Deaf children out there who will be getting CIs and will not be getting ASL

    their main point about respecting folks who have CI and their parents – YES i agree totally

    but they also should recognize that they have some privileges that the average Deaf person did not have and the average Deaf child will not have – and that is a fully natural and accessible langage

    Raychelle doesnt really cover that in her vlog – if i remember right

    im just kinda thinking on this and waiting to see if someone wants to compose something etc

  34. Tim V
    Dec 16, 2010 @ 05:41:52

    I really, really liked Raychelle’s vlogs when I first saw it. I also totally agree with you on that part about we shouldn’t look at folks differently if they have something behind their ears. Actually, I don’t think Deaf people should look at those who can talk on the phone any differently, even.

    As far back as my freshman year at RIT (man, that was 1999), my feeling about CI was more along the lines of “if it helps, why not?” I even looked into Cued Speech at that time, considered learning it.

    But…I also have friends who were with me my freshman year who grew up oral, with hearing aids, and I discovered why he now prefers to associate with the Deaf culture. It was a big eye opener in the past few months for me to learn more about why various Deaf people feel the way they do about these things, including CI. ASLNikki’s husband Rich’s blog about his life and how frustrating it was to try to blend in with hearing people, and to always be judged for how good (or not so good) his speech is was also an eye opener. Actually, I shared that link way back on facebook.

    I also found out that there are lot of people who ditched their CI, and wish they never got it.

    I’ve come to realize that, hey, if everyone were to learn sign language, then expensive things like CI won’t be necessary at all. Why settle for less than that? Why not aim, instead, for a world in which it is okay to be Deaf, and knowing ASL (or any native sign language) in addition to at least one spoken language is the norm. Even better, if hearing people later lose their hearing, they have something else to fall back to. Like curb cuts, which is useful for everybody, ASL most certainly can be useful for everybody.

    In the meantime, we certainly don’t live in a perfect world. Most of the people in the world can hear. In that respect, I can see the value of being able to hear through CI, hearing aids, and the like. If somebody else was to decide to get CI, I really do want to see it be a success. Yes, even if they implanted their baby. Aaah…I love hearing people — I have way more hearing friends than I have deaf. To be honest, my favorite hearing friends are those who do not think of me as any different from anybody else. They are a treasure, and I seem to have been finding more and more of those type of people lately. Sometimes they don’t even know how to sign, but their attitude is still priceless.

    That is the thing…I know Candy and others don’t seem to like ideas from people like Harlan Lane. But…thats the thing, have they thought about *WHY* those hearing people could have such a positive view, or be so supportive of deaf people? Personally, I can only think of one big reason why they would feel that way about Deaf people: love.

  35. handeyes
    Dec 16, 2010 @ 13:12:59

    well well well Mr. Tim

    we got a love lover in the house

    thank u and bless u

    MLK jr always said there are more White folks of good will than there are bad

    absolutely

    and there are lots of good Hearing folks – attitudes of love goodness openess effort cool flow groove etc

    yep yep and yep

    re: your statement: “Why settle for less than that? Why not aim, instead, for a world in which it is okay to be Deaf, and knowing ASL (or any native sign language) in addition to at least one spoken language is the norm. Even better, if hearing people later lose their hearing, they have something else to fall back to. Like curb cuts, which is useful for everybody, ASL most certainly can be useful for everybody.”

    cool vision

    that is why Baynton and others say “disability” is a cultural construct

    this is why Equality of Condition really appeals to me. it is not about changing the person but rather changing the environment to ensure equality is present – to remove the barriers that prohibit folks from having what is rightfully theirs equality

    it is not about altering the person to fit the environment

    adaptation in a positive way not a social darwinism way

    re: richard’s blog – i think i found the blog entry that covered his own personal journey – it was very powerful
    http://theaslproject.wordpress.com/2010/06/02/playing-hearing-a-losing-game/

    definitely worth a read

    re: love – ur last message – i have a new post up at people of the eye – if u dont care for political stuff – just scroll down to the bottom for some quotes u might fancy

    and BIG thanks

    peace

    patti

  36. handeyes
    Dec 16, 2010 @ 13:14:00

  37. handeyes
    Dec 17, 2010 @ 19:48:56

    post about a CI not working and parents not being listened to
    http://deafness.about.com/u/ua/cochlearimplants/cochlear_implant_failure_experiences.htm

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