CI: Detrimental To Tell Parents The Full Truth?
“Mishka, I think it’s possibly beneficial for the deaf community for you to post these blogs. But it may be entirely detrimental to parents who come across them in the early stages if they even consider choosing against a CI for an infant. That is my personal opinion. I am not neutral, I am speaking in favor of the choice which allows deaf infants to avoid such painful situations as Aaron described in his childhood.” Susanna Mishka Zena » Blog Archive » CI Teen: My Struggle With Social Life
Readers, last night was difficult for me. The whole time I’ve worked on my blog, during the Gallaudet Protest, the Brentwood Gate Ambush, the live coverage of the arrest of 135 students on “Black Friday”, the coverage of the Daphne Wright and Bahl trials, and other stories, I’ve never really lost my cool like I did last night after reading Susanna’s comment. This occurred after several attempts of her to minimize Aaron by denying that his headaches were related to his cochlear implant. She also had the audacity to imply that I’m not neutral after I covered one negative story, even though I have already shared Rachel’s exceptional success with her cochlear implant. I invited her and another c.i. proponent to participate in the discussion. Some people were so upset with my c.i. series on cochlear implants that they weren’t talking to me. Not neutral? Excuse me? Her implications were downright insulting to Aaron, me, and other Deaf people. After she made that last statement above, I asked her to leave the blog.
Who is really being more detrimental? Me exposing the truth or someone intent on sweeping things under the carpet?
I am aghast over the idea that a c.i. parent would deliberately deceive other hearing parents looking for advice, knowing that there are potential serious side effects. “May be detrimental to parents”? Hell, they deserve to know the pros and cons of cochlear implants. She is being detrimental to these parents by not being fully honest with them.
There you go–proof that overzealous c.i. parents who push for c.i. are not being honest with other parents of deaf babies and kids because they are emotionally invested in propagandizing cochlear implants.
This illustrates the importance of asking the c.i. wearers themselves what their experiences are. Their parents may not be so credible, like Susanna.
Because of the claims of Susanna that cochlear implant complications and side effects are very rare, I will add more stories documenting what Deaf people have experienced: that these complications are unfortunately not so rare.
However I will continue to be objective and provide more stories covering the positives and negatives aspects of cochlear implants.
After all, the parents deserve to know the full truth.
“Mishka, I think it’s possibly beneficial for the deaf community for you to post these blogs. But it may be entirely detrimental to parents who come across them in the early stages if they even consider choosing against a CI for an infant. That is my personal opinion. I am not neutral, I am speaking in favor of the choice which allows deaf infants to avoid such painful situations as Aaron described in his childhood.” Susanna Mishka Zena » Blog Archive » CI Teen: My Struggle With Social Life
Readers, last night was difficult for me. The whole time I’ve worked on my blog, during the Gallaudet Protest, the Brentwood Gate Ambush, the live coverage of the arrest of 135 students on “Black Friday”, the coverage of the Daphne Wright and Bahl trials, and other stories, I’ve never really lost my cool like I did last night after reading Susanna’s comment. This occurred after several attempts of her to minimize Aaron by denying that his headaches were related to his cochlear implant. She also had the audacity to imply that I’m not neutral after I covered one negative story, even though I have already shared Rachel’s exceptional success with her cochlear implant. I invited her and another c.i. proponent to participate in the discussion. Some people were so upset with my c.i. series on cochlear implants that they weren’t talking to me. Not neutral? Excuse me? Her implications were downright insulting to Aaron, me, and other Deaf people. After she made that last statement above, I asked her to leave the blog.
Who is really being more detrimental? Me exposing the truth or someone intent on sweeping things under the carpet?
I am aghast over the idea that a c.i. parent would deliberately deceive other hearing parents looking for advice, knowing that there are potential serious side effects. “May be detrimental to parents”? Hell, they deserve to know the pros and cons of cochlear implants. She is being detrimental to these parents by not being fully honest with them.
There you go–proof that overzealous c.i. parents who push for c.i. are not being honest with other parents of deaf babies and kids because they are emotionally invested in propagandizing cochlear implants.
This illustrates the importance of asking the c.i. wearers themselves what their experiences are. Their parents may not be so credible, like Susanna.
Because of the claims of Susanna that cochlear implant complications and side effects are very rare, I will add more stories documenting what Deaf people have experienced: that these complications are unfortunately not so rare.
However I will continue to be objective and provide more stories covering the positives and negatives aspects of cochlear implants.
After all, the parents deserve to know the full truth.
January 18th, 2008 at 11:49 am
What kills me about the whole thing is I’m seeing other parents defend Susanna, excusing her behavior because the Deaf Community has wrongfully attacked the CI children.
But the Deaf Community are not the only ones who have made the mistakes. The Deaf Community also did *not* create this mess.
Like I told Jodi on her blog, at least *I* have the balls to stand up and condemn this behavior on *all* sides. I don’t see very many others doing that.
We can point fingers at the other side all day and night long. We sure can point the finger at the CI industry and parents like Susanna forever, because they have committed far more wrongdoings than the Deaf Community has.
But that’s not going to help end this. So far I haven’t seen any serious interest on the parents’ part to take real action on ending this, sadly to say.
January 18th, 2008 at 11:52 am
Mishka:
I understand your concerns, but to a certain extent, the Deaf community has mischaracterized cochlear implants, and have spread misinformation about them. I agree it’s important to have the full facts about cochlear implants to hearing parents, with the pros and cons of each cochlear implant device. I am in full support of that, but it depends on the facts of the ‘cons’ and anecdotal evidence do not support the ‘cons’ which is why it’s important to have studies and peer-reviewed research as to whether cochlear implants do cause migraines or other headaches. As a CI wearer, implanted since age 7, I’ve never had any headaches, and the only kind I had was from drinking too much at social events.
We have to be sure as to the causation of headaches, and figure out the source, it could be the map, it could be the strength of the magnet, or incorrect placement of the electrodes. It’s important to have sources to back the anecdotal evidence up.
In addition, Mishka, did you get my e-mail in which I wrote about my story as a young oral deaf adult with a CI?
January 18th, 2008 at 11:59 am
Audist militants would do anything by providing parents DISINFORMATION AND MISINFORMATION.
All parents have EVERY RIGHT to know pros and cons.
It is a shame that the militants are walking on Earth. I dont need to say any more becasue you all know them.
We need to work harder by providing parents positive information about ASL. They will see a tunnel light of ASL. They will walk toward it. That is as simple as we can offer them.
Deafchip
January 18th, 2008 at 12:09 pm
Noelle, so that excuses Susanna’s behavior? It’s okay for her to be sanctimonious, dismissive and spread misinformation?
She and others are just as guilty as the Deaf Community is about misinformation on CIs. If I’m wrong, then please tell me why there’s no tracking on audiological failures of CIs. Please tell me why the studies on the side effects of CIs are practically invisible.
January 18th, 2008 at 12:12 pm
Apparently you have no problem with Susanna’s deceit, either and this disturbs me tremendously.
Please do give me some credit, please. I happen to know these people personally and I take serious offense to anyone implying that I would ‘mischaracterize’ anyone for a personal agenda. People who have read my blogs regularly know I am credible. It doesn’t help that people overgeneralize and put me in the same category, even though I repeatedly stress that I am neutral. I do not appreciate seeing hearing people tell deaf people that their experiences aren’t valid, when the hearing people don’t wear these devices. That is a deep insult to Deaf people, invalidating them because they don’t want to hear the truth. I am starting to understand why Deaf people are so angry.
For your information, the headache problem isn’t an isolated incident. I do know few other C.I. wearers experiencing this side effect. Just because you and others don’t experience this don’t negate other people’s experiences. I will never be so arrogant as to dismiss someone else’s experience, but this is what I witness here. I cannot help wondering if they are being so casually dismissed because they are Deaf.
Frankly I don’t see how we can have constructive dialogue if people are not willing to explore the truth. We experienced a severe setback yesterday with c.i. parents’ credibility. Susanna’s words are out there for everybody to read.
January 18th, 2008 at 12:26 pm
“We have to be sure as to the causation of headaches, and figure out the source, it could be the map, it could be the strength of the magnet, or incorrect placement of the electrodes. It’s important to have sources to back the anecdotal evidence up.”
What other causation could it be other than the fact that there is this implant in the head near the brain?
If I had something placed in my head that wasn’t natural, I sure as heck would have a headache too.
January 18th, 2008 at 12:29 pm
The Yahoo Groups site of ProblemCI has about 600 members, was founded in 2000, and contains in part the following statement of objective:
“Cochlear Implants have been a miracle to many people but there are some who have had this surgical procedure and have been disappointed by it’s results. Here is the place to discuss those difficulties and share with others who know how devistating this can be.”
It is a closed group and one has to sign up for membership to view the discussions. They aim to give support to each other and probably do not appreciate their discussions being made open or used to add to the controversy about CIs.
As a lurker, I have not engaged too much in the discussions, but have been appalled by some of the stories of inexpert surgery and poor medical followup for these members. A recent example was one who suffered intense pain and lack of support from the surgeon. It turned out that the CI was implanted too close to the external ear and was pressing on sensitive surfaces and doing the surgery again relieved the problem. Others have mentioned pain as a main problem with their CIs too.
This is not to add support or detract from the CI controversies; but like Mishkazena has said, people who have pain and poor results must NOT be swept under the carpet. They are suffering real symptoms and must have their voice also. We also need to know NUMBERS, how many have no side effects, how many have mild ones, how many are crippled by pain and unwanted effects. I personally will not be satisfied by statements like “only a small percentage have problems.” or “only a few have remarkable success in hearing.”
January 18th, 2008 at 12:31 pm
MZ, for what’s worth, you have my complete support!
disclaimer here: I am against CI. Different reasons that I don’t need to repeat what the others have already said – just my one basic reason: a deaf baby is healthy to begin with, why the need to meddle further! that’s my point.
when MZ decided to do series of stories coming from success stories AND failures, i knew that she had put herself in a tough position. however, i was up for that challenge. WHY? i’m not afraid of including success stories because there are also failures. i am not even 0.00001% convinced that CIs are medically necessary, and never will. still, i would listen to success stories as long as they do not display in conceited tone. then i wish them well.
do they do the same? no, instead of listening, they brushed away the first story of one’s experience of struggles AND they expressed concerns of how stories of failures would, as Suzanna pointed out, “be entirely detrimental to parents…” what, it is our duty to sugar-coat the cold and hard truth in stories? that clearly became evident that it is THEY who are afraid of complete 100% information including the other side: ‘failures’!
the deaf community is always accused for many things, including not listening to them, and not willing to compromise. OK, we LISTENED but they WON’T listen to us! Then why were they here? Yes, to convince us to go ‘RAH-RAH’ for CI’s! And we never compromise? Not true, often we eventually come to accept inevitable changes. For example, more and more of us come to welcome CI users into our community. Barb Digi mentioned in her recent vlog post that, according to DeafView survey in current issue of DeafLife, 72% responded to accept CI users. That is just one example of many, many compromises.
Lastly, to the concerned parents, just because the series of stories can be found easily on DeafRead doesn’t mean the new parents would not come across to read them. They can be found via google. Best wishes.
January 18th, 2008 at 12:35 pm
[...] http://blog.deafread.com/mishkazena/2008/01/18/ci-detrimental-to-tell-parents-the-full-truth/ [...]
January 18th, 2008 at 12:42 pm
I agree with both MishkaZena and Deaf Pundit.
I support the parent’s right on deciding what the best is for their child, but they have to be aware of things without resorting to blaming on either sides. Most certainly not hiding “irrelevant” information.
No one should be excusing one’s behavior or dismissing one, either. That goes for BOTH sides.
I could NOT believe what Susanna was saying to Aaron as she was NOT the one wearing the device, but Aaron.
I have no problems with my CI and love it, but I do not like it when a hearing person walks in and say to a CI person, “No, that’s not related to CI”. Whhaa…? That person is not the one who has to wear the device.
I have HEARD from some people who complained about headaches with their CIs.
Stop finding reasons why those people were miserable with their CIs and LISTEN to them.
They deserve to be heard just as much as the successful ones.
I can see how difficult this is for you, MZ, but it’s important for you to continue on CI series. That’s why you have my utter respect as a blogger because you are not biased and most importantly, neutral.
Everyone needs to be heard – whether they are a failure, success, or in between.
Numbers? They are HUMAN BEINGS.
Thank you.
January 18th, 2008 at 12:50 pm
Good Late Morning, MZ! I want to thank you for your “open discussion” blog which that I feel that you are very honorable neuteral lady on this planet! I want to thank you, MZ and DP SO MUCH for bringing up that CI issues blogs.
MZ, I do not know if you already read my latest comment on DP’s blog recently? If not, fine, I’ll copy over there and paste here: ASL Risen Says:
January 18, 2008 at 1:29 pm
DP,
Thanks for your clarification but the problem that I cannot force my baby to get the CI surgery risk while I know that I am a busy full time working mom. Too much responsible to watch out on the side of effects which it will waste my energy. I did noticed some parents gave up their energy relationship or close bondings with their own CI child who needs language and cognitive language development without using ASL.
Some (not all) parents did left behind child in isolating mainstream public school if they happen to feel so lonely with the not so good social peers. Depends on the location where they live in a very small town like rural farm or wherever, the public pre k-12 schools do not provide good Deaf education fully. Small towns do not have good technology with the computer systems now these days and could not afford because of the numbers of population that cannot be paid full tax for the schools. So the Catholic Society could find them and bring them straight to Deaf Oral education to pull the small town parents more attention without using ASL while we, SJI Alumni do NOTHING help the children.
I already know that problems: we, the SJI Alumians do NOT know how to be good model role to the young Deaf kids. Plus some of us are working Deaf people do NOT have time to be good model role because our working schedule and some of them do NOT KNOW and NOT UNDERSTANDING about Deaf Culture and Deaf History. That’s why we lost our own identies! SJI never bother to ask us to come visit the young kids to show our latened ASL users. SJI do not want to invite us if we happen learn how to use ASL in our late age! What’s the point for SJI educators to tell the young kids that it is so WRONG to use ASL ??? It has been going on for many years! That’s separate or divided!
Thanks, DP for your blog! Hope you will have a very WONDERFUL MLK’s Dreaming weekend! Looking forward to have my Deaf son coming home for this honorable MLK weekend while I have to be at work on every weekends! Sighs! Smile and hugs, Shawn
Edited by DP to put in paragraphs only
January 18th, 2008 at 1:05 pm
I am in no way excusing what Susanna did, and I am not denigrating Aaron’s experience with his cochlear implant. If the Deaf community wants to prove that cochlear implants cause headaches, then a study should be commissioned by NAD or another advocacy organization, and that study should be peer-reviewed. Or else it’s just anecdotal evidence at this time. Research is necessary in this instance.
January 18th, 2008 at 1:25 pm
Truth, involves giving information without fear or favor, giving both positive and negative views, based on medical fact. I think where it falls down, is no-one outside the deaf area feels we would ever give that balanced view, they assume deaf hate them so ignore whatever else that comes out of the debates, the anti-blogs seem to bear it out….
If having a CI is wrong because there’s nothing wrong with being deaf, then it follows children should not have sight-correcting surgery to save their eyes, because blind people manange OK as well, you see where it’s going ?
January 18th, 2008 at 1:27 pm
First, take a minute to realize that I’m as deaf as they come (born deaf and raised and treated like a deaf) and I’m just playing the devil’s advocate. And cuz I have the *balls* too to point out that ASL is not everything that is it cracked up to be. This is a parallel issue with CI users and from the comments above…
A Deaf Pundit ,
“We can point fingers at the other side all day and night long. We sure can point the finger at the CI industry and parents like Susanna forever, because they have committed far more wrongdoings than the Deaf Community has.”
That is a pretty big blame… So, that means that both communities suck?? If the deaf community is so great, how come there are so many failures? With schools only passing on average 25% of the kids. Sounds like the deaf community is not up to snuff. That can be a scare tactic for parents to get their kids on CI?
“She and others are just as guilty as the Deaf Community is about misinformation on CIs. If I’m wrong, then please tell me why there’s no tracking on audiological failures of CIs. Please tell me why the studies on the side effects of CIs are practically invisible.”
Well, it goes both ways… There is misinformation about the use of ASL too. Can you prove that ASL actually works?? Where are all the bad side effects of using ASL?? Does it cause people to have headaches too?? From maybe trying to learn it to following people who use it without moving lips to being mad from *D*eaf looking down on others that are not fluent in ASL or just want to use another form of communication?
MZ, look we have 2 sides of everything and I can understand where you are coming from in the fact that a few are brushing you off with actual stories of your friends with CIs, I know it hurts and sucks the big one! But I do have to tell you that the deaf community sucks too… And I get brushed off all the time by you *D*eaf people and let me tell you something, that is worst than being brushed off by CI supporters.
All I’m saying that there is no right way and no wrong way. There are pro-CI and pro-*D*eaf and as far as I’m concern they both are at fault. We are human and we will fight/backup what we have already done and/or believe in to the point that we must win the battle – not stopping to take a deep breathe and just be open-minded and talk things out. I’m not accusing you of anything, just stating a fact. Suzanna didn’t have to go that far, but she wanted to prove that she was 100% correct. Well, sorry, but that is never ever possible. So, in a way, it is a lost-cause.
January 18th, 2008 at 1:33 pm
Just came across this report on an auditory nerve implant (different location than the cochlear implant) which is the next generation implant.
http://www.med.umich.edu/opm/newspage/2007/hd.htm
For the generation whose cochleas are already ravaged by implants that did not work and need to have them replaced or redone.
I’m still unimpressed. The respondent who said “the deaf baby is healthy so why mess with it?” makes a lot of sense. Surgery is always a tradeoff and involves damage, with healing a matter of balance between scarring, infection, side effects, and rehabilitation. If all that can be bypassed, do so.
January 18th, 2008 at 1:36 pm
Oh MZ, I forgot to tell something from what I did happened saw there are some CI against CI, too. I felt bad for some CI kids and adults felt hurt by the new Tech CI users. I felt so hurt for some CI kids and adults! I did caught some new tech CI users did insulted the old tech CI users that they are LOW FUNCTION MIND. That is not right! We all should respect together!
January 18th, 2008 at 1:43 pm
ASL Rsien, you got it! That is too bad. That is what my son and I felt with these other *D*eaf too. Oh well, it takes all kinds to make a world. Just being nice will go a long way!
January 18th, 2008 at 1:51 pm
Brian, thank you for letting me know! Yep, true! Just ignore some of the attitude people including Deaf and Hearing also! Hope you and your family will have a wonderful relaxing MLK’s weekend! I am looking forward to see my Deaf son tonight! Hugs to your lovely wife for me please because I do really miss her vlog (GGGRRRR) but I did read her comments and glad to know that she is doing okay!!! hugs, Shawn
January 18th, 2008 at 1:53 pm
Elizabeth:
There will always be people who will say things that is far from reality. Don’t worry about them. You have done/will continue to do a great job!
Raphael.
January 18th, 2008 at 2:01 pm
Let me share few anecdotes from what I heard and also saw myself.
- One Deaf woman married to a latened Deaf guy with CI. She decided out for her love and curiosity, she got an implant 3 years ago only from day one to now suffer bouts of vertigo because the surgeon made a mistake that ruined her balance. She is a mother to two young kids and has to work at full times. Fortunately her work has been kind enough to allow flexibility on her unpredictable work schedule. (I know her personally, she said she really regrets and has to live with it for rest of her life).
- One Deaf scholar I knew for several years underwent a surgery that also botched. It resulted in a case of meningitis and her right hemisphere brain caves in her inner ear area because her medical team failed to carefully examine her inner ear structure that happened to be structurally abnormal by nature that she should never been implanted at the first place. She is constantly mildly sick from that. In her long description of suffering and everything what she went through, she did say that she is not generalizing her personal experience on others who decide to have CI for themselves or their kids but is right on cautioning how medical risk can be such life havoc.
- My husband and I have Deaf friends in Israel who implanted all of their Deaf kids. (8 to 10 years ago) One of them implanted for around 10 years to this day suffers daily headache and vertigo bouts. He is one of three Deaf siblings with implant.
Despite these bad situation, I do know a 10 yr old adoptee who started with ASL as soon as she arrived in this country when she was 2 yr old. At age 5, she got an implant and went on AVT therapy sessions with an AVT therapist who does sign and support ASL. (I know them all including the AVT therapist myself). About a year ago she went bilateral and is doing well in school with *ASL interpreters. She still use *ASL and interact with ASL friends in Boulder. I asked someone about her speech skills, the answer “Wow for profound hearing loss..she sounds like hearing with nice intonation and she seem have good pragmatic (social) skills. For this success story and others happy with it, we say “good good, glad that their overall well being is not being affected”.
To be honest, as a doctoral student in language development, I spend most of time reading and studying about language development, testing, and linguistic theories plus having a family of two kids, I really have a little chance to be able to immerse myself in research about CI. The other reason for not going into literature of CI, results are still varied however it is starting to narrow and should be more clear in near future. I still do not want to go after something else when there is so much need for ASL.
* I do mean interpreters are fluent in ASL, this 10 year old child’s parents always insist her daughter’s school hire interpreters with EIPA (educational interpreting proficiency assessment) score of 4.0 out of 5 in scale.
January 18th, 2008 at 2:24 pm
Mmmmmm….
I am absorbing the information the MZ is presenting out on the CI series. I am seeing more conflicting issues due to many different stories.
ALL surgeries carry risks. After any surgeries, the bodies rarely are the same. I still have a twinge of discomfort in my lower part of my abdomen where I had a C-section with my son, even to this day. What concerns me is that some medical professionals treat the CI surgeries almost causally (well, there are always excellent doctors, OK doctors, and lousy doctors. Can’t afford them… )
Yeah, there will always be some people who come across as “PRO” and other people as “ANTI-”.
MZ, I do hope that your series would alert the professional/national medical associations to start publishing the statistics of successes/failures so that we all will have a better understanding of CIs. So far I am hearing personal testominies and opinions.
Hmmmm… oh boy.
Howdy to Shawn
)
January 18th, 2008 at 2:31 pm
Oh Big WARM HELLO HUGS, Karen Mayes!
With my BIG SMILE!
Shawn
January 18th, 2008 at 2:43 pm
Yea, and it could also be that some doctors have done them thousands and thousands of times to take it for granted and just think that all people are the same.
What I wonder is that: Do doctors actually do all the work or are things “sub” contracted out to nurses and such that doctors don’t have all the facts before surgery?? I mean, take my wife for example with the C-section, there was no body checks or “physical” before hand, it was ok, time to take the baby out and lets cut her open. It is one scary thought that nothing was done to make damn sure my wife was up for surgery! I just wondered how we could better prepare ourselves to make sure that the doctors are doing their jobs right? They are human too and make mistakes and I guess we just have to stay on top of them…
BTW, my wife says HIYA!! But you knew that…
Thanks for the friendly hug! That was cool of you!
January 18th, 2008 at 2:44 pm
I thought I’d share this with you, I attended an open meeting in the UK (Wales), and there was a deaf lady (BSL user from the community), VERY angry about digital hearing aids, and was arguing on stage with an audiologist.
“My hearing aid was awful !!”,she shouted, “I put it on first time, it ws Soooo LOUD, I was in pain with it, I took it back to get it seen to, they adjusted it, but it was still the same, far too noisy, I couldn’t concentrate at all, I have been deaf for years and hoped this new aid would help me, it is making me ill, I am a sign user..
I went back a THIRD time to get it seen to, they turned it virtually OFF, it was STILL too loud.”, an audiologist said “This is NOT unusual, you have been deaf for so long, you did not have counselling to cope with what is, normal sound”…… the deaf woman replied “I was happier not hearing anything, so I give it back…”
January 18th, 2008 at 2:52 pm
Noelle, thank you for your clarification. I appreciate it… and I agree. NAD and other organizations need to find a way to make those studies happen.
January 18th, 2008 at 2:55 pm
speaking of headaches. . . ther are a LOT of deaf people complaining that their hearing aids cause headaches.
January 18th, 2008 at 3:13 pm
And there are a lot of hearing/deaf people complaining that their glasses gives them headaches… If there is something that is on the body that is abnormal, it is going to scream that it hurts or doesn’t like it.
January 18th, 2008 at 3:20 pm
excellent point! lucky with hearing aids and eyeglasses, a person can take them off. that is quite a BIG difference.
January 18th, 2008 at 3:31 pm
brenster, one can take thier ci processor off.
January 18th, 2008 at 3:34 pm
Brenster, you are right about taking hearing aids and glasses off.
Susan s, your son with CI can play a heavy sports.
January 18th, 2008 at 3:36 pm
I mean, Anna s,
January 18th, 2008 at 3:43 pm
anna s… turning ci processor off is not the same having whatever inside the cochlea being removed at anytime – that requires another surgery.
January 18th, 2008 at 3:48 pm
ann s, I am sorry for your son with CI cannot play some of sports … because it can damage the head if it was hit.
January 18th, 2008 at 3:50 pm
Nope, that’s a myth. My son is on a hockey team. No problem!
That’s one of several myths the Deaf anti-Ci folks love to embrace.
January 18th, 2008 at 4:28 pm
Oops, foot in mouth… I grew up playing football with my hearing aids on. Most of the time it was not a problem, just sometimes the aids would get damaged… But that was dangerous cuz what if the ear mold jammed up my hear and damaged the ear drum??!! Wow!! Lucky dude, me!
January 18th, 2008 at 4:54 pm
What I would like to see is documented statistics that can show how well each doctor performs. My gut feeling is that many of the problems that people are having are because of bad doctors. If the surgery is performed correctly, there should be no long term pain, sinus involvement, nerve damage, headaches or facial involvement. In short, it should be unnoticed by the CI wearer. I become just as angry as anyone else when I see how a bad doctor can get away with ruining a person’s health.
But please don’t blame all hearing parents for one individual’s responses. Just as there are some very negative Deaf people, there are some very negative hearing parents. None of us are responsible for someone else’s actions or responses. Thanks.
January 18th, 2008 at 5:58 pm
I’m for that, K.L. Any suggestions on who we contact to help implement this? I’m not sure if we should contact the FDA or the A.M.A., or the Audiologist Association.
January 18th, 2008 at 6:08 pm
DP –
That’s what I would have wanted them to provide the status report to all of us for long time. I have not heard anything from all of the above you are trying to say.
I suspect that AG Bell have obtained the reports from the FDA, AMA and the Audiology Association.
Any ideas, folks?
January 18th, 2008 at 6:10 pm
I wish I knew. I do know that we asked our surgeon how many she had performed, and what the complication rate was for her. Children’s Hospital in Seattle is highly rated, and we have met many families whose kids have been implanted there. We felt comfortable with the whole staff, and recommend them highly. I do know that on the CI Circle parents ask all the time about the good and bad centers/hospitals/doctors from other parents.
This issue is not confined to implants. It is difficult to get statistics on doctors for just about any kind of surgery. I have found that if I ask a doctor in one area where they would go and where they would NOT go, I get pretty good information.
January 18th, 2008 at 6:19 pm
To Anna S. in #26:
It varies from individual to individual.
1. I was born profoundly deaf. My hearing aids have restored the equilibrium in the ears; thereby, ending my Meniére’s Disease. Please take a note that I did not get the hearing aids for that reason; rather, I got them so I would be able to hear without them when I play the violin, the cello, or the piano. Fortunate as it was, I discovered that HA helps balance the fluid in the ear.
2. My friend had not had any tinnitis until she wore the hearing aids.
3. A foreigner I knew way back occasionally experienced an episode of a violent vertigo that required her to be confined to bed for one week or two following the implantion. Prior to being implanted, she suffered tinnitis. Her case was — in my opinion — was severe: worse from tinnitis to vertigo; that is. She would feel nauseated everytime she had an episode.
4. An implantée has experienced no recurrence of tinnitis for several years after the implantion.
5. Albeit not wearing any hearing aid, my sister has residual hearing, but hearing noisy sounds that are normal to hearing people makes her nervous.
6. Not to mention meningitis that occurred in Europe in the early 2000s.
Off on a tangent, a son of the Secretary of Navy wanted to be deaf like me. His hearing made him nervous and jumpy. He lived in the basement without a window.
The NAD developed a position paper in 1991 and again in 1993 about CI. The NAD rerquested that all CI doctors read the position paper to the parents as well as to the CI candidates. I understand that CI doctors were also urged to do psychological evaluation on both parents and candidates at that point, but again I understand that CI doctors have neglected to do so for past the decade.
January 18th, 2008 at 6:27 pm
I cannot say for all implant centers, but our center required a psycolotical eval, and a follow-up a year later.
January 18th, 2008 at 6:28 pm
Or psycological, if I could hit the right keys.
January 18th, 2008 at 6:59 pm
http://www.springerlink.com/content/unbx2r8qtr9kuafj/
Complications in pediatric cochlear implant surgery
Journal European Archives of Oto-Rhino-Laryngology
Publisher Springer Berlin / Heidelberg
ISSN 0937-4477 (Print) 1434-4726 (Online)
Issue Volume 256, Number 3 / March, 1999
uthors
H.-G. Kempf1, K. Johann1, T. Lenarz1
1Department of Otolaryngology, Medizinische Hochschule Hannover, Carl-Neuberg Strasse 1, D-30659 Hannover, Germany
Abstract
In a retrospective analysis we evaluated the intra- and postoperative complications in children who underwent cochlear implantation between 1984 and 1993 at the Medizinische Hochschule Hannover. The data and records of 366 children were collected and analyzed. Relevant parameters were major complications such as significant infection, intraoperative bleeding, facial nerve injury, implant loss and device failure, as well as lesser complications, including delayed wound healing, chronic pain and vertigo. Late complications such as cholesteatoma or electrode dislocations were also registered. Cases of acute otitis media were managed with conservative treatment. Data presented indicate that cochlear implant surgery in children is a reliable and safe procedure with a low percentage of severe complications. Problems related to ear surgery can occur and should be manageable with standard procedures. Careful operative techniques and sufficient personal experience can help avoid severe postoperative problems.
January 18th, 2008 at 7:14 pm
Gees! First of all I want to say that MZ is 100% credible, 100% neutral, and 100% fair to both camps of CI pros and cons. She honestly wants to bring both camps together with harmony… that is a simple wish of hers.
Susanna, I read the other post up to 81 messages and left to do errands thinking about what I should say in this post.
Aaron’s story is incredibily painful for many of us, the deaf population. Many of us have experienced horrors of mainstream, oral deaf schools, etc. Aaron is my 2 children’s age and I cannot fathom the treatment he got while my own children benefitted my own 100%involvement of their education. People ask me “do you wish you have hearing kids?” and i have said “no not at all because of my painful background.” Well, ironically, both of my kids have ADD and dyslexia. Because of my mainstreamed years in public school, I did NOT want my children to be mainstreamed and be called “stupid.” So I chose to place them in a private school specialized in Learning Disabled education. I feel I made the best decision for my kids. Both of my kids are now in college and doing absolutely well. I am extremely proud mom of my two kids no matter what they do. I did not want my kids exposed to cruelty of public school system. I am sure you are probably wondering why did i bring this up?
This is my choice and what I thought was best for my kids. My brother grew up in public school and they failed him miserably because at that time LD was not known as it is today. I watched him suffer even though I am deaf. We learn from our background, positive or negative.
It is Susanna’s choice to have her child with CI. We, deaf, should respect that just like Susanna should respect us. Simple.
Aaron’s story, again I repeat, is extremely painful and it only happened very recently. There are so many programs in this country which STILL operate like Aaron’s school which is incredibily horrifying!
so my point, Susanna, this subject needs to be treaded extremely carefully as it is painful for many of us older generation and it would have been nice if you were more sympathetic and LEARN from our experiences. I am sure you are doing to avoid horrible experiences for your child. I applaud you for being so involved with your child. That is incredibly important! I believe you 100% that your child is doing very well. I have no argument about your choice as it is your child. But please do listen to us.
We want to be able to meet half way and that is important. I have learned so much over the years that we should agree to disagree and move on.. at least be nice.
I had CI done 5 years ago this month and i had horrible reaction to the surgery as a result. I had horrible vertigo which lasted a month and loss of balance for 5 months. I had to move on and try my best to overcome my balance issues by exercising, etc. I decided to be positive and WOW I learned so much from hearing sounds! To be able to hear what sh sound like…INCREDIBLE! Not only that sound but many sounds like birds, cats, dogs, etc. Unfortunately I had to stop wearing it a year ago. I started having horrible vertigo episodes lasting til April. Doctors say I may have Meniere’s disease and suggested I change my diet, change my priorities, etc. Then my CI processors broke and I cannot afford to pay for them. So I have been without CI for a year and I was told that I would have to start all over again. I miss hearing sounds but the sounds are imprinted in my mind.
Anyway, my point was I did not know i would have such adverse reaction from the surgery. My friend wanted me to get a CI but she held back valuable information from me that she did experience adverse reactions. I was upset with her because if I had known then I would probably not go through the surgery. I believe in total honesty when it comes to sharing experiences. I have told others about my experiences and I told them I will be honest. As a matter of fact another friend opted for CI even though I told her about my experience. Well, she woke up with exact same reactions as i did. At least I was credible.
Susana, I am sure you feel you are credible but lets not be defensive. Let’s just share experiences without feeling defensive. There is no point not to be sensitive to the other side. What we deaf folks experienced are valid and important part of our deaf history. Your child is deaf and it is part of your child’s identity. I think that boils down to our identity. I mean, if a white family adopts an African American child and forces the child to be white which robs this child of true identity. It is the white family’s uptmost responsibility to embrace the Black culture. Bottomline, allow our children to be exposed to different cultures.
The reason why I say that is because our own deaf identity was suppressed while being raised as an oral individual who mainstreamed. We, deaf, people want you to appreciate our history, painful that is, and be open to hearing our experiences. It is pretty obvious why many deaf people are so opposed to CI. When we see a child with an implant we grieve for the child’s loss of identity. We may be projecting our fears on to the child with CI. We cannot help it. So it would be nice if we can be heard at the same time teach us what you believe in.
Susanna, i think you were pretty hard on MZ and understandably she became very upset. I know her personally and if you know her then you would be more gentle. Thats my belief.
Thank you for listening.
January 18th, 2008 at 7:42 pm
To Vickie Lou in #43:
I commend for your diplomatic approach with dignity, grace, and style. I am turned off by the opposite approach which is accomplished by “the balls”.
Thank you for your brilliant post of persuasion!
January 18th, 2008 at 9:24 pm
VickieLou,
I hear what you are saying, and I believe that other parents of children with CIs do as well, and we can learn from the experiences of those that came before our children. However, where parents such as Susanna and I get upset is when some on these blogs absolutely insist that things are no different today and that implants in children are wrong regardless. You ask us to listen to you, but we need to be afforded some credibility as well that maybe most deaf kids today can receive CIs at young ages, not have complications, learn to hear and speak well and be happy functioning as mildly hard of hearing people. I know that this is the case for my girls and for many others whom I know.
What bothers me is when my integrity and honesty are questioned simply because I am just another hearing parent and because I can’t come up with an exact number any more than you can. How many on this blog can tell me the exact number of kids raised with ASL who don’t fit that 3rd to 4th grade reading level statistic? How many of you can tell me exactly how many kids had an experience like Aaron’s? All you can do is what I can do, tell you of those I know who truly don’t fit the stereotype. Since these blogs are all about sharing anecdotal stories, or, in the case of Rachel and the other kids, firsthand experiences, then that is what we have to be open to and learn from.
I know that three other teens/young adults with positive CI and A-V experiences have sent Mishka their stories, and another one wants to do so as well. I hope to see them on here soon so that this presentation can stay even and neutral.
January 18th, 2008 at 10:37 pm
Melissa,
Oh my gosh!! Always back to that. This is the exact comment that can really get people angry. First of all it is not a true statement and is a generalization based on some really bad data collection. It is way past time that this data is updated.
“How many on this blog can tell me the exact number of kids raised with ASL who don’t fit that 3rd to 4th grade reading level statistic?”
For you to resort to this level is so unnecessary. My daughter happened to pass the ISTEP (which is the Indiana State Proficiency Test which all students regardless if hearing or deaf must pass in order to graduate.) The reading level is ninth grade. She passed the first time she took it. She was raised using ASL in our hearing family. Only a few in her class of 35 did not pass it. They were raised bilingually too. Some deaf of deaf…some deaf of hearing.
Do you realize that many hearing students don’t even pass this and yet their first language is English. Come on….. It all comes down to your attitude on “looking down on ASL”. When you look down on ASL, you look down on millions of people.
Isn’t it time to admit that maybe sign language is important for all deaf babies and children to at least have access to from the start. I am real tired of the excuse that it is too hard for hearing parents to learn sign language. It is not about the parent.,,,it is about the child.
Once again, I am not against CI’s but I am against people who are not willing to open their minds that ASL and other sign languages in the world are equal to all spoken languages. And this looking down on ASL is really causing a lot of divide.
People are upset that AGBell and AVT continue to look down on the use of ASL for kids with CI’s. This is obvious in their website and also in their scholarship program.
You have an opportunity to learn from some very smart Deaf people in these blogs who are the kids from the past who were the “experiments” of the system. They don’t want to see the future deaf children go through additional pain of not being accepted for who they are regardless if they have CI’s or not.
January 19th, 2008 at 1:18 am
Hearing Mom with respect I feel perhaps you misunderstood the point Melissa was trying to make. In the absence of relevant peer reviewed published data, all we have to go on is personal stories and to do that we have to start at a point of mutual trust. I think Melissa’s point was that the age old statement of “3rd to 4th grade reading level” creates the same reaction from the Deaf Community with regard to what is seen as the continuation of misinformation as continual statements that “CIs don’t work and most definitely should not be provided to children” do for the community of hearing parents of children with cochlear implants.
For the record I am the co-founder of the list serv that has 1400 members. Of the members there, we have happy kids, with active social lives, achieving amazing things and not just academic success or speech and language success. I don’t see that embracing & acknowledging the all round success of these kids and equally acknowledging that some children raised orally in the past have had incredibly painful experiences (like Aaron) are mutually exclusive. However if there is a continued comparison between the 2 I feel the discussion will not get that far.
If we what we are seeking to determine here is whether cochlear implants in young children are leading to happy, healthy and well rounded young adults, then that is what needs to be looked at. That is cochlear implantees today and their outcomes. Trying to evaluate their outcomes through the eyes of past mistakes or injustices is never going to produce a truly objective answer.
January 19th, 2008 at 1:27 am
It is obvious that some commenters like Melissa
have not done their homework. US News and World
Report keeps us posted about the highest literacy
of people around the world every year in May.
HIGHEST LITERACY:
1. France
2. Germany
3. Japan
4. Taiwan
15. Great Britian (used tod be the first)
16. USA (used to be the second)
Last: Somalia
It was in 1963 when an author ran a cover story
about students’s extremely poor reading
comprehension in TIME Magazine: “Why Johnny Can’t
Read.”
Again 30 years later — in 1993 to be specific –
another author wroted a cover story about students’s extremely poor writing in TIME Magazine: “Why Johnny Can’t Write.”
The authors (vide supra) were NOT referring to
deaf students; rather, they were referring to
hearing students who cannot read and write.
Again two summers ago in The Washington Post,
an article on the op-ed page said that more and
more adults CAN read, but they CANNOT read
WITH COMPREHENSION. Again, the author was NOT
referring to deaf adults, but to hearing adults.
Very matter-of-factly, more and more schools in
the USA asked Gallaudet University’s English
Department for help about the University’s
literacy project in 1997. Why? Simply because
Gallaudet students are deaf, but they and hearing
students are at the same grade level of reading.
Why?
January 19th, 2008 at 9:09 am
And in United States of America,
there are over 30 MILLION hearing people that cannot read and write!!!! illiterated hearing people.
Why?
And nearly no illiterate deaf people!
January 19th, 2008 at 9:33 am
sorry
i had to stop reading all the comments
i found it too painful – the tone of some commentors is really defensive and spiteful
it seems many people are suffering here – not just physically but emotionally
this is a VERY sensitive topic
MZ = will u be reporting on the number of deaths as a result of CI
when i first learned of this (children and elderly mostly) i was so saddened
i was like oh my gosh
mostly due to contracting meningitis as a result of infection from the surgery
very ironic due to the fact that many children become Deaf as a result of meningitis and to then have the parents choose to try to rectify / improve this condition by restoring hearing via CI only for a child to DIE from meningitis WOW
i know the numbers are low but still one DEATH is really too many
my heart just totally pains when i think of those parents – really it just aches in my being similarly for those parents whose children grow up with some complications or side effects from the CI – that is the last thing in the world the parents would have wished upon their darlings
i believe now they r having implantees get the meningitis vaccine before they will do the surgery to prevent the death-risk via meningitis infection but vaccines can cause some problems for individuals themselves
my heart goes out to:
parents and/or family members who have lost their loved ones as a result of the CI surgery
parents whose children have experienced complications / side effects from the CI surgery
the children who are no more or who are living with these adverse effects
as i can be happy for the parents and children where CI have been a positive experience, i must also mourn for the opposite cases which are sadly much much more profound and irrepairable
patti durr
January 19th, 2008 at 11:18 am
Melissa at 6:59 PM
The status you provided is not the reliable source.
January 19th, 2008 at 12:44 pm
Babies have grammar genes — regardless of their hearing status, says Harvard’s scientist Steven Pinker (“Language Instinct”, 1994). Ironic as it may sound, parents think that they are brainier than their deaf babies. Actually, it is the other way around. The plasticity of a child is not the same as that of an adult (ibid.). The child can learn three, four, five languages, something that parents cannot learn because they have been so strictly monolingual all their lives that they lack the plasticity in their brains!
As a French tutor, I have observed that there are two groups of college students: one group have an easy time learning a foreign language because their multi-linguistic background has already been established during their childhood days (remember that they have a plastic brain) whereas the other group have a difficult time doing the same because they lack thereof. I take Pinker’s version to the bank because I was exposed to my mother’s sign language and to Daddy’s French and to Latin at St. Francis Xavier’s. It is much easier for me to go on to study the fourth language if I so desire.
Jean-François Grosjean of Paris, France, where he was educated at the Sorbonne, says in his article, “The Right of the Deaf to Grow Up Bilingual (2002), that European children pick up multi-languages from their parents and grandparents and European neighbours sans learning from a textbook and says that the deaf child has the right to grow up bilingual. Grosjean would thank Karen and Brian Mayes for raising their son bilingually.
Babies, I must once again repeat, are brainer than their parents. In the closing, I would like
to mention what Victor Hugo, one of the all-the-time greatest French writers (Les Misérables) said in 1845:
In defence of a genius deaf French teacher, Ferdinand Bérthìer, Victor Hugo said to a mypoic French judge in 1845:
“What matters deafness of the ear, when the mind hears. The one true deafness, the incurable deafness, is that of the mind.” *
*To read more about above, see a compendium deaf history, “When the Mind Hears,” (1984) by Harlan Lane
January 19th, 2008 at 3:41 pm
Hi Im back. I apologize not responding earlier as i am out of town with my family.
first #45 Jean, Thank you for your compliment
2nd # Melissa, thank you for your reply. I do want to comment what you said. You started off by saying you do hear what some of us deafies went through… thats what I wanted to see.. to know that you do hear us. I also want to say that for me personally, I am learning to see from other parents with CI babies. I dont think I ever really talked to a parent like you before. I cannot speak for other Deafies but Im speaking from my own self that I do not think anything is wrong with CI for your kids. It is my biggest fear that the CI kids grow up not acknowledging deaf culture and ASL. ASL is very important part of the deaf culture and it will always be cherished. I did not grow up with ASL and its obvious im different from other Deaf who grew up with ASL. I fully accept that ASL is a language and so did most of the country. Many educators allow sign language as their 2nd language. When I first was exposed to sign language I was not ready to accept ASL but later i was eager to learn ASL from my deaf coworkers. I was brainwashed by my mother that ASL is for not smart deaf people and I am way too smart to use sign language. Boy was I wrong to even think that! It was at Gallaudet when I finally realized hey that kind of attitude was wrong. I have learned and changed over the years. Same goes with CI I was wrong and now i accept the value of CI but it is not without risk.
But the whole point is ASL is a valuable language for deaf and hearing people as well as CI giving kids opportunity to be able to hear spoken language. And we do need to lay out both negative and positive outcomes of CI. i agree that CI is so much better today than it was before, no doubts at all; however, any surgery of some kind is invasive and risky, it is scary!!!
January 19th, 2008 at 9:28 pm
Another Mum,
I did not misunderstand Melissa’s intentions at all. She was jabbing at ASL. She was trying to equate ASL to poor reading levels.
We are all learning about CI’s and I hope that you and your 1400 member list serve will start to learn a bit about ASL and Deaf Culture before your child and their children grow up and find it themselves.
January 19th, 2008 at 9:39 pm
Vickie Lou thank you for such an honest and open post.
It is an interesting discussion about learning ASL as another language. I can not speak for any other parents but I certainly have never made any derogatory comments about ASL (or where we are Auslan) to my son. We chose to use AVT and work on the development of his spoken language. Interestingly at one point in his preschool times they learnt Christmas songs in different languages for their concert English, French, Italian and Auslan. He actually said that he found the Auslan the most difficult to learn, so for him it wasn’t a “natural thing” but to be fair that may also have been due to the capabilities of those that were teaching it to him.
He is now about to enter the International Baccelaureate Program at school and because it is in an international program a second language is compulsory, so he will be learning Italian this year. Before anyone asks me why it can’t be Auslan or ASL, it is because that is not one of the accepted diploma languages. Notionally the diploma is a “one world” concept and so the addition of a language and exposure to the culture of another country is a pre-requisite of this program and it has to be another country.
I am not in anyway trying to diminish ASL (Or Auslan) as a language however this generation of CI kids who have developed oral speech and language look at a second language as a vehicle for travel and going to another country, to see the world. From my own experience I know that this is not because I have ever said or indicated in unspoken cues anything negative about Auslan or ASL. If my son decided at this point that he wanted to learn it, then I would completely support him in doing that. He is old enough now to make his own decisions and being the articulate young man that he is, he would most assuredly tell me that too!
I want to make one more point here and I will do my best to do it in a way that won’t offend or insult anyone here. If I choose the wrong words and some one is offended then I apologise right now because this is most certainly not my intent. In my son I see a young man who sees himself as operating and living his life in the “hearing world”. He is under no illusions that he is deaf and if people ask about his hearing loss he will say that he is deaf, because he is! However he sees himself as part of the hearing world but as someone who hears a little differently to way other people do, sort of in the way people in wheelchairs see themselves in the same way that able-bodied people do, but sometimes just have to do things a little differently. His deafness is a part of him but it is just one part of what makes him the sensational young man he is, one part that is joined by other parts like being very tall, having blonde hair, a wicked sense of humour, a love of the TV show MASH etc etc etc. So the point I am trying to make is I am wondering if it is because kids like him see themselves in this light and seem very happy coping with the rigours of having a hearing loss and communicating on a daily basis with others that use spoken language, that they don’t seek to search out deaf culture or ASL. This is simply an “I wonder if” statement not a generic everyone feels this way or this is the reality because I said so……just a thought to put out there as a point of discussion.
April 20th, 2008 at 10:14 pm
I need help understanding why the controversy over the cochlear implant, but eyeglasses are ok? What is the difference? If it’s ok to correct vision, why not hearing? Or do those who oppose the implant also oppose eyeglasses,medication, braces for teeth or limbs, etc. I am confused. Thank you.