Kat Reading

Kat Reading

Wednesday, December 1, 2010

Wrong again jerkoff

A received this comment today, and I would like to address it:

"So you're annoyed with the Deaf Community's warning you that Miss Kat's screaming and resistance to her newly turned-up Advanced Bionics failing-hot implant is a sign that you are forcing her to do things your way rather than doing what is genuinely in her best interest. That your dreams were guiding what should have been more rational decision making.
Now you find out that her implant really WAS causing her to scream because it had failed hot, and that Miss Kat was trying to tell you, but you wouldn't listen.
It's not too late to admit that you were wrong, and that Miss Kat was herself trying to tell you a Deaf Truth... That hearing people want hearing so badly that they will force deaf people to pretend that the interventions are "not that bad" when they ARE every bit that bad; that they are just endured out of love, and faith that a parent would not do something to hurt their child.
But these 2 posts seem to show you busily burning the bridges to the Deaf community over what turned out to be your own mistaken decision.
Or are you hoping just to quietly reimplant her before anybody notices that your decision to continue to force Miss Kat to endure the effects of a bad implant caused your daughter unnecessary pain and suffering to which YOU were far too long DEAF, because you chose to believe the medicos over your own daughter's cries for help.
Maybe time to LISTEN when Deaf people try to warn you? Even if they do not articulate their warning to your liking, perhaps TRY to understand that they are not only trying to HELP your daughter, but that they are too often RIGHT.
- AndyJ"


I'll be perfectly clear. My daughter's implant DID NOT FAIL. In fact, she just had her 3 month post MAP appointment on Monday and she is doing wonderfully. In fact, she had some speech discrimination testing done, with just her NEW CI and she scored:

WIPI- 21 of 25
MLNT- 54 of 59 phonemes and a word score of 11 of 12

Yeah, AB had a recall. That sucks. But my daughter is great than 90 days post and not affected. It is ridiculous for you to accuse me of hiding this. You are a straight up asshole. I'm not going to mince words. You actually believe you know better than I do. Well guess what, WRONG AGAIN. You sir, are the reason people make their blogs private. But, I won't. Up yours and the horse you rode in on.

34 comments:

Anonymous said...

Maybe you should have it checked out. I seen too many "I hate it" mapping.

Candy said...

Miss Kat's Mom...

You go girl, telling AndyJ like it is.

What an idiot, this AndyJ.

There's also no such thing as Deaf Truth. That got me laughing.

I'm sorry you have to deal with this, but don't stop blogging. ;)

Ann said...

That's a piece of fiction-writing if there ever was one, lol. *roll of eyes*

The scores speak volumes.

Ann_C

(e said...

You tell him!

By the way, what does "fail hot" mean anyway?

(e

Dianrez said...

Sorry you got attacked for no reason. It's true that some people have had failures, some catastrophic that required removal. But you've had success, and that's what is important. Hopefully this will always be the case for Miss Kat.

The emphasis in the Deaf community is not to attack the CI, but to demand full disclosure of all failures, from minor to catastrophic, and the actual numbers. We aren't getting it all, and have been concerned that an overoptimistic picture is being painted. There are people who haven't lucked out and they need to be heard.

Even one failure is too many if it happens to impact you or yours. There is no room for acceptable error in medical devices...perfection is technologically possible and should be expected.

JR said...

I think this guy is a demented fool.

Candy said...

Dianrez..

I have listed a couple of links over at Patti's (not sure if she has approved of it yet)that shows that when there's failure, people do talk about it. Ain't no one trying to keep it a secret. Besides these information benefit of those who have it and those who do not. People like you really have no "need to know", unless you are secretly considering getting a CI?

Anonymous said...

Way to go! These blithering idiots are just too much whenever they reach for their Kool Aids.

As for Dianrez's "perfection is technologically possible and should be expected" is living a pipe dream. In the world of medical electronics there is no such thing as "perfection" when you have myriads of electronic components working together while placed inside a human being which is already a harsh environment to begin with. Even pacemakers experience a failure rate of any where from 0.4 to 2% depending on who you ask. Time to get real about this so called "perfection" idea.

leah said...

Keep on blogging! Miss Kat's scores are awesome, and I'm glad you have the courage to tell it like it is (both with the struggle to adjust to new hearing in a new "ear" and for standing up to people who are just plain mean)!

I am grateful you are honest and strong- even in the face of false accusations and assumptions!

Dianrez said...

Candy, people like me DO need to know, even if I personally would not choose a CI, considering what I have read about it.

First: as a (retired now) rehabilitation counselor, people like me get adult clients with all sorts of assets and weaknesses, and we have to work with that. Teachers also have this charge.

Second: as a responsible Deaf adult and consultant, I am asked my opinion about the CI often. I am absolutely going to give as much of the truth as possible, not the CI manufacturers' brochure claims. Nor surgeons' claims, because my job would start years after they leave off.

Third: as a member of the Deaf community and as a mother to a member of that community plus two involved CODAs, I am sincerely interested in my CI fellows and their experiences.

Fourth: the Anonymous respondent needs to know that consumerism is the best way to keep any industry ethical. Demanding perfection is not only ethical, it must be kept THE primary goal.

A malfunction or error could affect you or your child. Would you want to be the unlucky one? It would only cost you a few months' wasted time. Not to speak of a twitch or a facial paralysis. Or a massive infection. Oh, too bad, that is to be expected.

Anonymous said...

Dianrez, you of all people understand that there are inherent risks in any surgical operations. Even going to the dentist carries an inherent risk. The key is to minimize that risk.

Parents are warned of these risks as well as possible hardware failures. Yet, we can already see that CI technology continues to improve. Parents and recipients alike should be informed of these potential failures and risks. Ask Kat. She was the one who signed the consent form. Was Kat not informed? Is that what you're implying Dianrez? Spill it!

Name one single major technological medical device that has been proven to be perfect, without flaws, and of no risk when placed inside a body of a recipient. Name one.

Dan Connell said...

Dianrez said... "perfection is technologically possible and should be expected."

Only one thing to say to that: Ah-hah-hah-ha-hah-ha! Hee-hoo-hoo-hoo-ha-ha-ha!

I challenge Dianrez or anyone else to produce any electronic device that has never failed. Any takers? Didn't think so.

Dianrez said... "Even one failure is too many if it happens to impact you or yours." ...

Nope... don't see it that way.. and only people who live in fear of the unknown would make such a silly and illogical statement.

If you actually believed or practiced what you have written, you'd never get in a car to drive to the grocery store.

The odds that "you or yours" will be seriously injured or killed in a car accident is several orders of magnitude higher than having a CI implant go bad on you.

Why do you continue to use automobiles if you know the odds are so much higher that you can be killed outright?

Statements such as your's just show that the fearful and the uneducated have little use for truth, or for logic.

...dan...

Dan Connell said...

Oh.. forgot to mention ... there were two (2) - count them: 1, 2 - failures for the CI recall. I have no idea how many were manufactured, but let's assume it was low, at about 10,000 units. That's a failure rate of 0.0002%... and, might I add, no one has died from the two failures.

Car Crash Stats: in 2005 -

2.9 million people were injured and 42,636 people killed.

About 115 people die every day in vehicle crashes in the United States -- one death every 13 minutes.

A CI is way, far-away, safer than a trip to the store....

...dan...

Dianrez said...

There you go, Dan, throw a red herring like comparing automobile accident statistics to minimize the issue of CI failures. (A later letter from the company adds that there were 9 more failures that were being studied for the same issue.)Even then, we do not know the TRUE numbers of failures, harm done, side effects, etc.

Using the same comparision, one can bring up corporate deviance. How the automotive industry tried to hide defects that caused fatalities. How the industry calculated that it was expedient to allow for and settle liability lawsuits in order to still reap immense profits. Here was an example of the industry accepting a margin of error even though it meant some deaths and profound injuries.

We need to have a mindset that even one failure is not acceptable and work toward that, applying it to all industries that can affect human life and wellbeing.

Even if we do not actually achieve perfection, the effort still must be made and take first priority over profits. Anything else is cynical.

haddy2dogs said...

WOW!

I read this and thought, how sad. Everyone loves a fight.
I have Morman friends and we don't say crap in front of them.

If you want folks to get excited and fight... use strong language. Maybe it is exciting and validating? Ignore folks and they go away....

We as parents we are just trying to do our best... I wonder why we want to get involved in the mayhem? If we really want the best for our kids maybe we can ignore the politics and let others work it out. Delete the comments you don't want. That person has no control over you.

The issues are strong and changing fast. Wouldn't it be better if we all worked together and let each family, just be, and tell their story?

I know you are mad but really by feeding it the public just gets another exciting debate at your families expense. People love it.

I think as Miss Kat gets older you will mellow a bit and this will all just be stuff floating under your bridge. Maybe a bit later she will just want to read her story. Remember you blog will follow her.

Warm wishes,
Mel

Candy said...

Mel..

Having been around since 2007, I can tell you most of the opended minded deaf bloggers are not interested in getting into a fight or argument. Some bloggers are constantly attacked by commenters like that asswipe andyj. Some bloggers have put up with it without retorting back, like I did in the beginning. That is, until a group of deafhood folks harassed me and contacted my employer becuase they didn't like how I blogged about AB2072. When I blog, it has nothing to do with my job. So, it's interesting how far these folks will go. I get harassed, threatened and bullied because of an opinion of mine? People like andyJ really need to get a life. So, I understand Miss Kat's mom.

Anonymous said...

Andy J was too blunt, and more interested in "I told you so" than in gently helping Miss Kat's mom realize how narrowly Miss Kat missed the bullet.

I can't help but think that Miss Kat's mom reacted more strongly to Andy J than she would have to somebody saying, "Hey, good thing Miss Kat didn't get one of THOSE implants, right?"

Despite long-time public outcry, the device manufacturers aren't required to say how many devices are implanted each year (*1), and all reporting done by the clinics is voluntary (further skewing the results). The weak tracking requirements make it impossible for those trying to compare the rates and types of failures to those of other devices such as pacemakers, because such comparisons, as well as basic determination of success and failure rates require knowing the absolute number of such surgeries, and require that a census (all devices) or a statistically random sample be used.

The federal MAUDE database lists 2308 "Adverse Events" related to cochlear implants so far for 2010. Some of these Adverse Events were fairly mild, but 929 (~40%) of these were serious enough to require reimplantation (*2).

Note these figures are just for THIS YEAR, so far... Still two more months to go (MAUDE data lags reality by at least the 30-day grace period allowed for reporting, plus the amount of time required to determine that an un-tune-around-able problem exists).

Miss Kat's screaming introduction to her new device isn't even on the radar here, despite the fact that it can occur due to a capacitor out of value rather than the most typical failure mode of shorting out (as is currently one of the possible root causes for the AB hot failures in the current recall). Such heroic retuning is considered acceptable for the device as its required tuning is currently understood. The frequency with which the CI medicos have to say "I don't know why that happened" is a big part of the concern, but those concerned are relegated to the "jerkoff" category for mentioning a less-than-happy ending is possible. Only the good stuff should be talked about, so that only the good stuff will happen, right?

Although my comment is both polite and fact-based, I prefer to remain anonymous, because Miss Kat's Mom bites people who point out uncomfortable facts.

Concerned Due to Still-Hidden Statistics, but Not a Jerkoff


*1 - "Cochlear Implant Complications - Utility of Federal Database in Systematic Analysis - Tambyraja, et. al. Archives of Otolaryngology - Head & Neck Surgery

*2 - A naive search can be performed from: http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/search.cfm A more precise search requires downloading the raw db files (http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/PostmarketRequirements/ReportingAdverseEvents/ucm127891.htm) and parsing them manually.

Miss Kat's Parents said...

I assure you my reaction is not because of the recall. I am angry because he accused me of lying. He flat out said that my child had a failure, and that her discomfort with the new implant was caused by actual electrocution, rather than simply the new stimulation. Again, he called me a liar and said that we were having my daughter explanted and re-implanted secretly. He was making things up and accusing me of putting my desires above my child's health and safety. That is 100% unacceptable to me.

Haddy, as for why the public response, liars are like mold, they thrive in the dark. He thought he could accuse me and make those horrible statements with no consequence. Well, this is the best I could do. I refuse to be intimidated. I have been told that I am abusing my child, that she will grow up and hate me, that I raped my child by giving her an implant, I even had one blogger say that he hopes that kids with CI get brain damage so that parents will stop implanting kids. This is the trash that is out there and aimed at my family and our choices. So, yeah, eventually, sometimes a bad word creeps to the surface. I won't apologize for that.

This is a fight against ignorance, and unfortunately, most of that fight is with the very people that are supposed to embrace my child and be her community. I will continue to fight, so that, hopefully, my child with be greeted by an OPEN community that accepts all deaf people, not just the ones who have a pedigree that they approve.

Miss Kat's Parents said...

Oh, and while I agree that transparency in failure is incredibly important, you guys know that CIs still have the lowest 20 year failure rate of most any implantable medical device.....

Anonymous said...

"CIs still have the lowest 20 year failure rate of most any implantable medical device..."

Do you have a source for that statistic, please? I'm sure you know that there are a lot of pseudo-statistics floating around out there on all sides of this issue.

Dr. Tambyraja's complaint in his article was specifically that the evidence does not currently allow such a statistic to be calculated accurately at this time.

That claim also feels overstated because implants have changed so much in the last 20 years. Just which model (implanted in 1990) has enough units that have survived implanted for 20 years already to offset the ones that have died or have had to be explanted for whatever reason?

If I find any info related to your statistic (one way or the other), I'll let you know what I find out, but I suspect that larger, non-electrical implants such as hip and knee implants will have a much better survival rate than any of the implants which depend on remaining sealed for their functionality (despite the greater wear and tear on the joint implants), given how hostile the human body is to seals that keep electronic implants working...

Important to know if Dr. Tambyraja is wrong and people ARE now able to calculate accurate comparative 20-year lifetime statistics for cochlear implants now, but I fear that this is another individual doctor expressing his or her optimism regarding the procedure.

Gotta start ensuring that parents aren't getting either overly-optimistic information or overly-pessimistic information, and we can both help by asking hard questions and pressing for REAL answers.

Thanks for any pointers to that statistic's source!

-Not Jackass

Miss Kat's Parents said...

http://www.hss.edu/conditions_partial-knee-replacement.asp

This says that the survival rate of knee implants at 20 years is 85%-90%.

And this says 97% at 10 years

http://www.ejbjs.org/cgi/content/abstract/73/3/397

As for implants:

Cumulative survival rates at 18 years were predicted by extrapolating regression functions to published data. Predicted 18-year CSRs express the likelihood that the device will function throughout child development after early implantation. Devices with titanium casing exhibited 18-year CSRs from 0.900 to 0.988 for a monolateral implants and from 0.810 to 0.976 for both bilateral implants. Devices with ceramic casings had 18-year CSRs of 0.740 to 0.944 for monolateral implants and 0.548 to 0.871 for bilateral implants.

http://journals.lww.com/otology-neurotology/Abstract/2010/08000/Long_Term_Reliability_of_Pediatric_Cochlear.7.aspx

Anonymous said...

BTW, I DO recognize that an implant doesn't actually have to survive the full time for this calculation to be done. It is generally calculated from a statistically random sample having already lived a much shorter period of time.

In 2005, I got a hip implant model rated at having a 99.97% chance of lasting 30 years (that is, it has "a 30-year lifespan") despite the fact that this model had only been in the field for 17 years at that time.

I just don't see that cochlear implants have either accurate replacement surgery numbers, nor the stability of a single model over time (even 5 years of real data would allow extrapolation) for such a statistic to be accurately calculated.

Starting the search... There sure are a lot of things that can be implanted these days! Teeth, breasts, joints, insulin pumps...

Whew!

- NJ

Anonymous said...

Didn't see that you had already answered. Will dive in and come up to speed. Thanks!

- NJ

Anonymous said...

Just a quick update.

1st off that 30-year extrapolated CSR on my hip is for a "uncemented young hip replacement", as osseointegration is a greater problem with hip replacements for those older than 65.

2nd, if you can squinch your eyes that the following CSR data comes from the device makers themselves rather than being independently determined (hence may be overly optimistic), see also: http://deafness.about.com/od/basicsofcochlearimplants/f/cilasting.htm

Diving into your citations. Maybe I'll learn something. ;-)

-NJ

xraevision said...

Wow, I can't believe how hostile that comment was. Where does anyone get off judging what goes on in other people's lives? As parents of deaf children, we are really all doing the best that we can for our kids. The proof that you are doing what is right for Miss Kat is shown in those scores. I really appreciate you telling your stories honestly. Sugar coating doesn't help those of us who look to your blog for support and hope. Please keep blogging!!!

Anonymous said...

Oh boy! I have a deaf son who has the AB implant. He was implanted 3 years ago. He loves his implant. AND he goes to Illinois school for the deaf. He is fluent in speech, ASL, signed english.

Now here's the interesting part. I have the AB implant. I was activated 2 weeks ago. No problems so far. And it has been a life changing experience for me already. I LOVE my implant! :)

We can have the best of both worlds. So silly to argue over this.

Sue

WisDeaf said...

Excuse me, I am wondering why exactly the Deaf Communities are constantly berating against the people, who wants/can speak as well as have the ability to hear with hearing aids/CI. I do understand that the community, who relies on sign language as part of their communication modality. However, do they have the right to attack the people, who can speak and hear via hearing aids/CI? I find this very offensive instead of embracing them for who they are and do the best of their abilities to do what they can. The people regardless Hearing, Deaf, HOH, Hearing Loss, and/or other people, should be very happy and pleased of what they can do at their point of their lives. It is part of the adaptation. Unfortunately, not all Deaf/deaf people have the ability to speak nor hear. That is ok, too! At least, they learn how to communicate via sign language. In our society, most of the people are hearing and have never been exposed to a Deaf/deaf/serious hearing loss/CI person in their lifetime. It is always difficult for them to really understand what it is like having those kinds of hearing loss. That is very understandable from a Hearing person's point of view. It is sad for me to see that within the Deaf/deaf/HOH/CI/Hearing Loss people fighting with each other constantly and not helping each other via understanding and accepting the differences. There will always some disagreements among within each other even within the Hard of Hearing Society, CI Society, and so forth. In reality, there are so many differences among us and is always grateful to listen and to learn from many different people, with different backgrounds and experiences. I hope I am making sense for myself in this blog. If not, please ask me. Thanks.

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AliciaD said...

Unfortunately while not every Deaf adult thinks this way, the few that do are a very vocal group. They don't seem to realize that the attitude they have combined with how little they often know about CIs really hurts the group that they are trying to represent and all too often I start seeing parents of kids with CIs or oral deaf adults who start generalizing those types as being anyone who uses ASL (nevermind the fact that there are a lot of Deaf adults and kids with CIs and hearing aids).

I say it again and again and again - using spoken English as well as ASL is just another way of being bilingual. Having a CI is just another way of being d/Deaf. If people would stop the "either or" approach I think there would be a lot less controversy and a lot less issues with the deaf community and deaf education.

I'm curious what will happen when I begin teaching within the next year or so. I know I will have students with and without CIs and hearing aids in a bilingual setting. Fortunately, in my personal experience, I haven't meant many of the extremist types on either side.

Anonymous said...

To Dianrez and anonymous....so nice to see the realism contained in your comments and a post from someone who actually understands research methodlogy and statistical calculations. Such a great diversion from the usual emotionality.

Dianrez said...

Just now had the opportunity to catch up on the remarks here. One stood out: although off-topic, but I wanted to respond for those who asked:

"Excuse me, I am wondering why exactly the Deaf Communities are constantly berating against the people, who wants/can speak as well as have the ability to hear with hearing aids/CI." (WisDeaf)

It's a strongly Hearing world, and we have been indoctrinated since early childhood to recognize that. Hard of hearing/oral classmates were praised and showcased in our schools. Others who did well with hearing aids were similarly singled out and tended to be given higher grades in speech or language. This attitude transferred to the playground: those who could speak and hear better often displayed superiority attitudes or took advantage of their skills. It can be in-your-face at times.

It would be similar lighter-skinned blacks taking advantage of their closeness to white society in being accepted and in finding jobs more easily. It works that way for the more oral deaf, too.

That's oversimplification, just as it is overgeneralizing that all Deaf will resent the oral deaf, but it might help one to understand why the "oral divide" exists. No matter how fair we all try to be, some of that Hearing mindset still gets through.

Add to that the threat that the CI represents to the hard-won Deaf acceptance of self and pride in accomplishments. Too many people are crediting the CI as being responsible for all the accomplishments of their children or themselves. Some professionals are predicting the demise of ASL and actually closing schools for the deaf.

No wonder some extremists are dumping on all who opt for the CI. That doesn't make it right, but I fear it will take another generation before we all come to be matter of fact about it, same as for hearing aids. At the same time, maybe people will accept that it takes a LOT more than aids to make an accomplished person.

Anonymous said...

"...perfection is technologically possible and should be expected."

Ye gods, I hope that is sarcasm. How would you feel if hearing people took that approach to the birth of deaf children? That if you have a deaf baby you should just abort and try again, since afterall it is technologically possible?

Dianrez said...

Anonymous, I could barely believe what you just said.

Yes, we have a right to expect CIs to be manufactured as perfectly as possible with the technology available. Just consider the technology that goes into other implants which work much more reliably. Pacemakers, for example.

Comparing born-deaf children on the same level with defective CIs is a total travesty of judgment.

One we accept uncritically as they come to us from God and help in whatever way we can, the other we have a RIGHT to demand and expect high-quality, yes, even perfection.

Our children deserve no less. Uncritically plugging into their heads CIs that fail hot, fail and require reimplantation sometimes two or three times, fail and require expensive parts replacement or else are put away for good, is criminal.

Consider this: would YOU have brakes put on your family car that had a record of 3 percent failures? New cars have been recalled for less than that.

Miss Kat's Parents said...

Dianrez, on this point you are wrong. CIs do not have a higher failure rate than pacemakers. Their 20 stats are worse. People with pacemakers have to have additional surgeries as well.