CI and FAILURES

“a new design that is built to last a lifetime.”

More propaganda, falsehoods and lies

so we now see deceit is not so sweet

COCHLEAR co. billed their CI500 range as “a new design that is built to last a lifetime.” See this article from the Associated Press in the Chicago-Sun times but in FACT they didnt even last a few years for some folks.

’tis a pity, a shame and reckless that the Food and Drug Administration fails to list the COCHLEAR co. worldwide recall of its CI500 range implants

’tis a pity, a shame and reckless that the Food and Drug Administration fails to list last years Advanced Bionics (one of AG Bell Assoc. other Circle Alliance partners) recall last year of its Hi-Res 90K cochlear implant due to it failing hot

http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/CochlearImplants/ucm062892.htm

’tis a pity that the National Institute on Deafness and Other Communication Disorders (NIDCD), which is part of the National Institutes of Health (NIH) and which is involved in EHDI – Early Hearing Detection Intervention fails to have ANYTHING up about recalls – see http://www.nidcd.nih.gov/health/hearing/coch.asp

Don’t even get me started on the Center for Disease Control (CDC)

more government money at work????

For folks and agencies that keep saying they want to ensure parents have all the information to make informed choices – they fail in the informing area it seems.

’tis a pity that AG Bell Association and their Academy that pushes AVT / LSL – advocate, train, and certify folks in sound and speech therapy and fail to include visual acuity and signed language

’tis a pity that COCHLEAR Americas and Advanced Bionics were one of A G Bell’s Circle Alliance Partners and also financed the AG Bell Association Cochlear Implant Fellowship program but both companies have recalls and been fined for failing to follow ethics and failing produce reliable and safe devices

’tis a relief that the AG Bell Association alerted folks to the COCHLEAR recall in their recent email update.  thank you AG Bell Assoc for doing that [boo – in the same update they also advertise a summit on cell regeneration – yikes]

While all the initial news about the COCHLEAR co recall was via the articles reporting on the stock plummeting, we will have to see if the regular media will begin to ask the hard questions instead of all the glowing and shinny articles about the “miracle”

questions like:

1. how does one recall something that is in the head and stimulates parts of the brain

NOTE: the recall is only for the UNIMPLANTED COCHLEAR CI500 range devices

If someone has one already implanted and it is working – COCHLEAR co. says leave well enuf alone.

If someone has one already implanted and it is NOT working – COCHLEAR co. says they can get it explanted and be reimplanted with an older type of CI known as “Freedom.”

2. Why the sudden raise in CI500 range just up and quitting inside the head – that is mighty odd and signifies a significant design problem?  Clearly the things are not built for life and clearly it is not so easy to determine what went wrong and what will work and won’t unless you can test it INSIDE of someone.

3. How do the 5 month old, 7 month old, 12 month old etc infants indicate to their parents that their implants are not working?

4. What happens to the infant and child that no longer has a working CI but whose parents have committed the child to being oral /aural only – what happens for the weeks and month before the explanting and reimplanting can be rescheduled – are there any provisions in place to provide the child and family with a fully natural and accessible signed language?  And why isnt that already provided as CI do not work consistently, reliably, or effectively for everybody always and a fully natural and accessible signed language has proven to help not harm and has been declared to be a fundamental human right?

5. There are more questions the media should be asking like – why haven’t, we the media, done more stories about some of the deaths caused as a result of cochlear implant surgery, some of the less than rosy results, and how many folks have stopped using their cochlear implants?  Why do we, the media, just cover the moment of implantation and the mapping session and the “miracle” and/or the Deaf community’s concerns about cochlear implants but almost NEVER interview a Deaf person who later rejected their cochlear implant(s) or who had an adverse experience with cochlear implants?  Ya know in the spirit of “the truth and nothing but the truth” and “journalistic integrity”

curiouser and curiouser, eh?

Cochlear implants literally fail folks- sometimes they fail hot (see Advanced Bionics recall 2010 recall of their Hi-Res 90K line) and sometimes they fail cold (see COCHLEAR CI500 just stopping cold in their tracks.

And when a cochlear implant which cost on average $50,000 – $80,000 for parts, installation, and therapy etc breaks on the inside, a recall is not as easy as taking your car into the shop.

The complications, risks, and hardships of getting a working replacement are not as easy as being given a loaner or a rental car either.

When a cochlear implant dies, the options are:

leave the dead part in the head and hope no leakage, scar tissue, infection, magnet moving, skin erosion or anything like that crops up 10 – 20 – 30 years down the line

– NOTE: leaving it dead in the head also means leaving the person Deaf and for some folks that is totally not an option.  There is the other ear and the brain stem but you get the point – for some folks once is enuf.

or explant the dead cochlear implant (i dont  know if the term explant has made it into the printed dictionary but it is a term that is used in the medical world and it just means to take the thingy out of the body – the opposite of implant)

there are numerous dangers with explanting

of great concern is – there will be an extended period of time in which the infant and child is not getting auditory stimulation and is not getting any VISUAL stimulation in terms of LANGUAGE because they system often pushes ORAL (no signing) / AURAL (no signing) ONLY

thus leaving the child completely deprived of any language input when there is a perfectly good language being gobbled up by hearing babies and their hearing mummies and daddies all over the US – ie signed language and in the US of A that is American Sign language

Hopefully parents will know to give their Deaf children ASL no matter if they choose an implant or not but with the raise of Option Schools and Oral only education and the huge push to implant at 5 mo (against FDA recommendations) and all the big $$ behind the cochlear implant industry, the “profession” of audiology and speech pathology and all the government money spent on hearing detection and not on LANGUAGE introduction – well… we gotta do more than just hope, don’t we folks?

Also of note is how these notable agencies which influence legislation, funding, and intervention (FDA, CDC, NIH NIDCD, NCMAM, and AG Bell Association) fail to mention or make note of the FACT  that four major world organizations have declared the importance of a fully natural and accessible signed language for Deaf kids.  Language deprivation is NOT COOL cuz it leads to language deprivation and that is a denial of language rights and human rights.

  • World Health Organization,
  • United Nations – Convention on the Rights of Persons with Disabilities,
  • World Federation of the Deaf,
  • International Congress on the Education of the Deaf New Era and Accord for the Future Agreement 2010)

So before the systems that have been pushing oral /aural ONLYism have hidden behind the cloak of how grand and great cochlear implants are, how implanting babies before they are one will result in them being near hearing like and thus no spoken language delay, how successful listening and speaking makes a person, and how parental rights and informed choices are all the rage but we continually see this is UTTERLY false – we see how they have been pulling all the strings behind the curtain to deny children the right to a fully natural and accessible signed language and how these agencies are failing to sayiANYTHING when the magic bullet makers fail – when cochlear implant companies are sued, fined, their products spark, fail HOT, get recalled, their stock plummets, their wares are taken out of the warehouses and hospital shelves and meanwhile the parents and the kids are left with NOTHING but hollow and shallow promises. hmmm – dont seem right does it?

nice job US government – sure keep covering those ever expensive devices via medicaid and medicare (which is about to get a major hit) cuz you will still need to cover the 2nd one and the replacement and the therapy and the CART and the interpreter and the captioning and the…… and it still will not be enough – so much for your cost saving plan.

This is where someone will pop up to say stem cells, laser treatment, the new pill they are working on to which we will say – SIDE EFFECTS!  Geez folks – WAKE UP!

and meanwhile – there aint really nothing wrong with being Deaf ya know.

That is the most important truth they dont want ya ever to discover.  Its dandy to be Deaf and its handy to be an ASLer and if you wanna add that other jazz – talking, and singing, and dancing, and listening – im cool with that.  Just dont EXCLUDE equailty of condition and dont EXCLUDE justice.  (it is not just, right, good, ethical, wise, prudent, effective etc  to deny a Deaf infant and child the right to a fully natural and accessible signed language)

apparently cochlear implants are not just a hot & cold failure commodity in stock but they are also in blogsite traffic.  The visits to this site soared as COCHLEAR co’s stock plummeted – hmmm?

seems folks r hungry for the truth

Knowledge is power folks

(note Oralism was also declared to be a failure so i have NO idea why the system of EHDI is still pushing the labeling of a newborn as having FAILED the hearing test – the newborn and family is being FRAMED into a deficit model from the onset – they even have brochures where the hospital will X a box that says = Your baby has failed their hearing test – and send the parents home with that.  RUDE beyond RUDE.  especially when i have been meeting several parents who say they were FINE when they learned their baby was Deaf -they were like – “sign me up for sign language classes NOW and cool she cant hear SSHHHHHH. that means she wont hear my cuss words.”  yep not everyone treats the news of baby deaf as a death sentence and not everyone plummets into despair and grief.  some folks do say cool beans and ASL rocks and maybe we will do some of that other stuff too – its our option but first and foremost we gonna love up our newborn and say welcome and we love you as is and we will say it in a language s/he does not have to work for.

pssst – it is NOT the newborns, infants, children, or even adults who become deaf that are the failures – it is they system that continually portrays being Deaf as a malady, infirmity, affliction, disorder, disease (see CDC and NIH).

Many moons ago women were saddled with the falsehoods of being  the “weaker sex,” African-Americans were “intellectually inferior,” gays and lesbians were “a psychological illness” when in FACT they were none of those things – they were and are fine.  Society just needed an attitude adjustment.

thus far the SYSTEMS of TREATING Deaf folks have FAILED because they treat them as an illness instead of as a PEOPLE.  And that is not cool ya basta with that crap already ya all.  Get with the program – it is ok to be Deaf – it is just NOT ok to be oppressed.

Truth and Soul Force rock and roll and always win

STAND tall and long folks for the truth and for love.

To all the families who have been or are or will be adversely impacted by problems with cochlear implants, my heart goes out to you.  To all the folks i know and love who have cochlear implants and/or have chosen them for their children – you fine no worries.  We are examining the system – not your choices but rather how and what information the systems provides you with and what they DON’T provide you with and WHY.

re: the Cochlear Implant industry – somone in the previous CI thread comments said the CEOs at COCHLEAR got their bonuses before they announced the recall – not sure if that is fact or fiction but we do know from Eron and other big business greed and corporate deviance does breed alot of failure in moral reasoning skills and ’tis a pity because attached to those cochlear implants are humans and they deserve first and foremost to know – they are loved and lovely as is and to be told this in a language they can fully understand and access regardless of whether or not their cochlear implant is working.

“a new design that is built to last a lifetime.” hmmmmm

peace,

patti

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20 Comments (+add yours?)

  1. Paul Kiel
    Sep 16, 2011 @ 19:21:15

    my friend….money talks!

  2. Don G.
    Sep 16, 2011 @ 20:24:49

    Once again, you ask the HARD QUESTIONS that the MEDIA should be asking! Indeed!

  3. Not a follower
    Sep 17, 2011 @ 17:08:18

    How can you possibly claim that you are not anti-CI with posts like this?

    How does a a baby report that the device wasn’t working…. the orange light comes on.

    As for the 2 devices (out of 30,000) that failed from AB…that was unfortunate, but it is still technology and things happen.

    Do you bother to follow the stats for pacemakers or other implanted medical devices, or just ones you hate? If you did, you would see that CIs actually have a LOWER failure rate than they do.

  4. Not a follower
    Sep 17, 2011 @ 17:10:48

    Oh, and a child does NOT fail their newborn screen. It is pass or “refer”. When a child gets a “refer”, they need to have more in depth, follow up testing. I’m sorry you didn’t bother to research even that tiny detail before posting your nonsense.

  5. handeyes
    Sep 18, 2011 @ 02:36:25

    Paul – yes often it seems money talks however history has shown that soul force and truth force also talk and talk peacefully and successfully

    we just gotta get the truths out there and get busy STANDING for it

    Don – yep we gotta keep asking why they are not asking those questions

    “Not a follower” commentor – because i am for the truth does not mean that i am anti-CI. I am for ensuring its safety and ensuring it does not get used as a weapon or a tool to push for oral / aural ONLY programs because four international bodies have already said that a Deaf child shall not be deprived of a fully natural and accessible signed language

    if u want to slop me with the false label of being anti-CI so be it. i’ve been hit with worse.

    no worries and not matter. Truth force and soul force all the way

    re: the babies orange light – well that can break too cant it? and not all the models have those flashing lights do they? and what about when a CI may still be transmitting but something else is going wrong – meaning it is not shutting down – does it still make the light go green because its “working” but working in a bad way unbeknownst to folks

    this questions about what and how the baby can communicates things is legitimate because:
    1. they are implanting at 5 mo of age now (against FDA recommendations)
    2. some warnings i saw said – if child shows discomfort or is resistant to wear the CI etc but on the CI implant literature i have seen – some children are resistant to putting on the CI at first and sometimes they display discomfort when first activated that is to be expected etc…. (not the exact wording but in a rush right now) basically there are contradictory messages sent to the parents – if they cry and fuss – dont worry and just keep making them wear it and the other notices saying if they cry and resist it could mean something is not right

    so the issue of what can a baby communicate and how is VERY valid and needs examining

    re: the AB failing hot recall for the 2 acknowledged cases – well actually AB has had other recalls you know and some have had to do with deaths post surgery more than 2.

    re: follow other types of implants – i have inquired about such a wee bit. I was once told by an expert who was very familiar with pacemakers, hip replacements, etc if a implant device company had as many recalls as Advanced Bionics had – they would be shut down by now (this was stated to me prior to the failing hot 2010 recall). I asked what was the difference why wasnt this co. getting shut down – the person replied – because in the eyes of the courts and various systems it is often seen as “it is better to risk possible death than to leave them deaf”

    and pssst pacemakers is for a life threatening condition so folks see it as a medical necessity where the risks of not doing it outweigh any possible risks from having done the pacemaker surgery and implant.

    re: FAILING the OAE and the ABR – i have researched around and even examined some of the state materials that are given out at the hospital – the language is FAILED often and even some have brochures with a baby on the front and after it explains what EHDI is about OAE is and ABR are and then has a box with
    ____Your baby has passed the hearing screening
    ____Your baby has not passed the hearing screening. Please call….

    In addition to not pass, I have also seen the term fail, failed, and failing in many articles re: the statistics on universal newborn screening results and various websites.

    No worries – i done did me homework.

    now dont you find it odd and wrong that the FDA has not updated its page re: cochlear implant safety and recalls – several recalls are not listed there

    should we click pass or refer for them or FAILURE?

    peace,

    Patti

  6. Me
    Sep 19, 2011 @ 04:12:53

  7. handeyes
    Sep 19, 2011 @ 05:12:06

    Heye “Me” –

    Thanks for the link – i assume your comment “so much for your research.” is referring to my comment of: “re: follow other types of implants – i have inquired about such a wee bit.”

    wow – how did you translate that to be “research”

    i do not know much about pacemakers or hip replacements – i can barely keep up with the CIs stuff – for example just this morning i learned how Advanced Bionics had a press release about the FDA re-approving its recalled Hi-Res 90K implant for U.S. market and MED-EL has a press release about its new super small cochlear implant – both the releases went out when the COCHLEAR co. recall of CI500 range was announced.

    Odd eh?

    i do appreciate the link you gave me because im really starting to get VERY disappointed in the FDA – i mean that is not good what they have been doing and not doing. that metal to metal hip replacement problem is serious.

    I’m still pretty puzzled as to why the Advanced Bionics recent recalls and the COCHLEAR recall are not listed on the FDA cochlear implant safety and recall page – just makes me wonder what else is missing.

    govt dollars at work?

    much peace

    patti

  8. Deafa
    Sep 20, 2011 @ 13:27:00

    What did you mean by attached to parts of the brain? Just making sure as CI do not touch the brain at all.

    A liitle interesting read while researching: http://www.healthguideinfo.com/neurological-disorders/p67717/ I notice vagus nerves is near the ear and it made me think of what happened to someone I know. He was hospitalized once due to the issue with vagus nerves (a simple oversimluation can drop your blood pressure..it made him faint, unable to walk for hours, blood pressure around 80/30 or something low like that, can’t remember but they thought he was dying) .Although, I never heard of cochlear causing that problem although some loud high pitch from ci did make me feel alittle dizzy few times before but not sure if it is because I am not used to it.

  9. Deafa
    Sep 20, 2011 @ 13:27:44

    Test

  10. Trackback: Deafhood Discussions » CI and Failures (People of the Eye, Sept. 16)
  11. handeyes
    Sep 25, 2011 @ 22:54:19

    heye Deafa

    i was wondering why u had a comment with “test” but just checked the spam folder and saw the comment above awaiting approval – maybe cuz of the link?

    u are right that CIs are not attached the brain – as i understand thing the CI chip (receiver / stimulator) is put under the skin and a hole is drilled through the skull for the electrodes prod to be slid through to then stimulate the electrode array in the cochlear and the auditory nerve picks up the signals sending them to the brain.

    i replaced attached with stimulate

    thanks again

    re: the link about vagus nerves and illnesses etc – this is new to me. thanks

    some folks have reported nausea, dizziness, headaches, etc associated with cochlear implants but hopefully it does go away

    peace,

    Patti

  12. Deafa
    Sep 26, 2011 @ 15:27:20

    Yeah, i figured it was the link. Thanks. Yeah, I was curious about the nerves area the ear and seeing if can make people dizzy but i think I am just not used to it.

    Oh btw, the conditon this person have is vasovagal.

  13. handeyes
    Sep 27, 2011 @ 20:13:59

    glad u figured it out – and before me !

    hope ur dizziness will subside

    i dont know much about vertigo but it does seem associated with the ear at times

    re: vasovagal – that is a mouth full to say, eh?

    hope the person finds some comfort

    much peace & love

    patti

  14. deafchipmunk
    Sep 28, 2011 @ 01:37:15

    Patti!

    Great blog. Thanks for pulling facts out of the carpets. The practices of audism must be stopped.

  15. handeyes
    Sep 28, 2011 @ 03:01:45

    ohhh its so messy under that carpet. what do u say we take it out into the sun and give it a good washing and let it dry in the sunlight and while its drying we can rack up all the muck underneath it?

    chances r we wont know everything until another whistle blower comes forward like the one did re: Cochlear Americas kickbacks and insurance fraud

    but we do see from the little we can see – it aint pretty

    audism + greed is a BAD combo

    peace

    patti

  16. Dawn
    Sep 29, 2011 @ 16:17:53

    I applaud you for sharing this crucial information about CI flaws. It’s very important that people, especially parents to be fully aware that CI is not 100% guarantee.

    Keep going at what you do, dear.

  17. handeyes
    Sep 30, 2011 @ 13:00:44

    Thanks Dawn.

    Peace,

    patti

  18. Casey
    Oct 20, 2011 @ 22:15:23

    Hello, I read about your post. It’s very interesting…
    I am 14 years old and I have CI since I was 4 years old. My parents are hearing and they really don’t know how to help me, so they looked for people to help them. People helped my parents to put me in school, and I learned how to sign (ASL, so I could be comfortable with deaf world.) My parents wanted me to be comfortable with being in hearing world so I got CI. I grew up with CI perfectly, no problems at all. My parents support me a lot. They made sure that I learned ASL and speak (and hear as well.) As I grow up, people around us talking about they were against CI. I was like why? So I decided to research a lot. Now I got it. I realized that I’m so lucky that I got so much of support from my family and friends. I love to live in both worlds! And also I speak very well, and signing ASL very well. All of this would never happened if my parents didn’t look for people to help them.

  19. handeyes
    Oct 20, 2011 @ 22:24:28

    Casey

    thank you for sharing about your parents and your bilingual upbringing – ASL & English

    Im really glad your parents looked around and got the help they needed and you and they are all happy with the choices that they made.

    Really i am VERY happy about this. i think there are many good folks out there so we need to share more about these successes

    Thank you so much for your comment

    Peace,

    Patti

  20. piratemichael
    Dec 20, 2011 @ 12:34:54

    whoa, I read it very clearly and i was puzzled about Not a follower recommend and i doubt that not a follower not tell and hide truth….. read and look at http://www.weitzlux.com/cochlear-implants-lawsuit_1933467.html and http://www.lainjurylaw.com/cochlear-implants.htm

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