LTHFAdvocate

And the risk of contracting meningitis in the deaf population even if you are NOT implanted is much higher (I've heard 3 times) that of the normal hearing population, and even higher still if the source of your hearing loss is a cochlear malformation. Also, if the source of your hearing impairment is meningitis, your risk of re-contracting meningitis whether or not you get implanted is also way higher than the general population.

Sheri

Deafness

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jillio

Which means that, in this case, the physician (and the parents as well, in my opinion) should have been even more diligent reagarding the vaccine. Since implantation is done on a population that has an increased risk, I would think that the surgery would never be undertaken without proof of the vaccine having been given prior.

rockdrummer

As much as I hate participating in this misleading thread here's my take. The doctors are the experts and should be the main source of information including vaccinations. Not all parents are knowledgable enough but I do agree they should do their research. IMO it should be a pre-requisite for an implant. Actually, my personal belief is that all children should be vaccinated period.

jillio

I agree that not all parents are knowledgable, however, (and this is just a personal belief and not a criticism) when you have made the decision to put your child through an elective surgery, you are obligated to inform yourself regarding all aspects of that surgery. Your child's welfare is your responsibility, period. Had the parent informed themselves of all issues regarding the surgery, they would have known to request the vaccine. That however, does not reduce the physician's responsibility for insuring that the vaccine had been given.

This is where my problem with CI implantation of children lies. Are parent's truly making informed decisions? Do they really have ALL of the inforamtion available to them to make an informed decision? Or are they making their decisions based on very, very limited criteria?

rockdrummer

Most of my life I have put complete faith in the medical community and fortunatly I have never regretted it. My guess is there are a lot of people that do just that. It wasn't until the situation with my son where I started to second guess everything a doctor tells me. It's unfortunate but that's the reality. There are many reasons (I won't go into) why I belive some in the medical community have hidden agenda's. As far as parents making informed decisions I would ask you how does one accomplish this. My personal experience is one of frustration. There is no way to get total accurate and consistant information. At least not that I have found. If there is please tell me where this is available. What I have found, knowing what I know is there are still varying opinions and inconsistant and incomplete information out there and depending on perspective, one may or may not consider a CI successful. We went into this in great detail in another thread. I believe the FDA should be tracking in painful detail the metrics for implanted children and adults and be the source for the information needed for a parent to make a truly informed decision.

jillio

I agree that it is difficult for parents to obtain all of the information, and the search can be frustrating. The medical community does contain, however, those practitioners who do not tell patients of all the risks involved because their fear is, if they do, patients will opt out of certain surgical procedures. But that is exactly what informed decision refers to. The decision is the patients, and if they have not been provided all of the info, both pro and con, they have been prevented from making an informed decision. There is legal recourse to this, as patients are required to sign a consent form saying that they have been informed of all the risks. If later, a complication occurs that is a known risk, and the doctor failed to inform the patient of such, then he is guilty of malpractice.

I would recommend that parents not only obtain a second opinion, but that they obtain a second opinion from a source not affiliated with CI surgery. That way, there is no bias. Then you take the pro opinion, and you take the unbiased opinion, and you compare them. If something comes to light that you are not aware of, bring it up to the implant team. See how they respond, and then weigh their response in light of the fact that they have an interest doing the surgery.

DefLord

Parents should always investigate all areas and always get first and second opinions. But the same time I would always check for my child what my options are and look for people who had the procedure done to see what I need to do as well. The Medical Community at times also "ASSUMES" that the parents knows everything because they "ASSUME" that they might have already done their research. So it goes both ways - but general speaking maybe one of the conditions that needs to be added before anyone goes under the knife is to get a proof of the vaccine.

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rockdrummer

While I am not dis-agreeing with you I would wonder where one can find an unbiased opinion regarding a CI. Everything I have seen is either from the medical community, the OEM's or from anti CI activists of which all are bias.

jillio

**nodding agreement**

jillio

How about a general physician? All people in the medical community are not biased. However, all those who are on an implant team are naturally biased.

rockdrummer

would a generalist really have the in-depth knowledge needed to aid in such a decision? Maybe... Maybe not. How much time does one take to seek out the informaton? I have heard that in the cases of young children there is a window for language aquisition and there are also cases where time is of the essence. My child was a case in point. Due to ossification setting in the window was rapidly closing. In my view a parent shouldn't have to spend days, weeks and months researching information because in many cases they don't have the luxury of taking that much time.

dreama

i think this is generalising a little. There are posters here that tend to be neutral on this topic such as Shel and Deafdyke. I consider myself more anti CI. Not that I've anything against deaf CHOOSING to get a CI for themselves but the choice has to be theirs and I resent when certain deaf and deafblind charities focus exclusively on the CI's and not on alternatives. It makes me feel like CI's are being rammed down my throat. If only they would promote ALL tecnology advances in eqal messure (not just things that can be seen as a 'cure')and were a little less biased then they are I would be less anti CI I think.

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jillio

Was the window closing because of late diagnosis? And agreed, parents shouldn't HAVE to go to these lengths, but the fact is, they HAVE to. And in my opinion, are obligated to for the sake of their child's welfare.

R2D2

I think perception of bias can depend somewhat on your own point of view. I have friends who are passionately anti vaccination and they believe that GPs are biased, not educated enough about the dangers of vaccinations, are being paid by drug companies to get as many people vaccinated as possible and so on.

I don't agree with them of course but that's their point of view. They believe they are doing the best by their children by not having them vaccinated, until they are old enough to make their own choice.

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Cochlear implant myths

deafskeptic

I think that borders on irresponsibility on the parents' part.

My father has always wished that the Rubella vaccine was available when I was born. I don't think he has ever gotten over the fact I was born deaf. I think my loss was more devasting to him than it is to me. I've never felt devasted by my loss. .

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jillio

And I can understand their point of view, as physicians receive "gifts" from drug companies on aregular basis, jsut as CI implant teams receive such from CI manufacturerers.

R2D2

Well I don't know if CI manufacturers send gifts to implant teams, but it does seem to be a fairly widespread practice generally across the medical community. I would tend to agree with you that it's not a good practice, as potentially and theoretically it could induce medical personnel not to act in the patient's best interest.

Anyway, I did my own research about vaccinations and went ahead and did them. Despite the problems inherent in the medical industry, the benefit outweighed the risks as far as I was concerned.

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Cochlear implant myths

R2D2

Same here. Maybe it's because he's a doctor?

My mother never expressed such feelings to me. She sees deafness as being part of her family and wouldn't have it any other way.

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Cochlear implant myths

jillio

And I would agree with you on the vaccinations. I had my own son vaccinated, because after I had all of the information, I made the informed decision that the benefits outweighed the risks, just as you did. But we both had all of the information necesssary to make an informed decision, and accepted those risks. I just think this case is a perfect illustration of a parent making a decison without all of the information being made available, and when that is the case, they have actually been prevented from making an informed decision.

jillio

I can understand his feelings. My son was born deaf becasue I was exposed to a virus called CMV when I was pregnant. It is the leading cause of virally caused congenital deafness in children, just as Rubella was prior to the vaccine. And even though a parent understands that they did nothing negligent to cause the exposure, there is always a bit of guilt that remains with you knowing that, even unintentionally and completely by accident, you exposed your unborn child to something that resulted in his or her deafness.

deafskeptic

Quite possible. Once he asked me if I blamed him for my deafness. I was floored and shocked that he'd ask me such a question. It had never occurred to me that anyone would be to blame. It's just one of those things that happens.

I wish he'd be a bit more flexiable about my commincation difficultes and that he need to focus on what I can do and not what I can't do.

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R2D2

It must be quite common for parents to self blame. My husband has very mild epilepsy and I remember his mum saying that she had racked her head to remember if she did something wrong or if he got a bump to his head to trigger it all off.

As you say, it's one of those things that happens. Part of the tapestry of life, I suppose.

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Left ear implanted 9th June 2006 Activated 29th June 2006
Right ear implanted 31st August 2007 Activated 18th September Both Nucleus Freedom

Cochlear implant myths

jillio

Absolutley. And sometimes it is much more productive tostop asking "why" and just deal with "what is" because answering the why doesn't change what is.

rockdrummer

..

jillio

So what are you saying? That it was progressive? My point was that the widow began the moment he was born. What happened to the time between birth and implant?

deafskeptic

I think he's saying that because of the ossification, the worse it got the less likely the CI would help his son. Once most of the cochlear becomes ossified, the implant can become useless. This is assuming the operation takes place after ossification - not before the ossification. If I recall correctly, once the cochlea becomes ossified, it can be very difficult to operate on; this depends on the degree of ossification.


Still there are tales of success but I assume that those CIs' cochlears weren't as serverely ossified as RD's son.

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Activated on May 9th.
Upgraded to Opus 2 9/10/2010
Think Pink.
FREE JILLIO!

jillio

Thanks for clarifying. I thought he was referring to the window of opportunity for oral language development. That's where I got confused.

rockdrummer

He was born hearing. He contracted menengitis when he was 18 months old and lost his hearing as a result.

jillio

Thanks rd. That's the info I was missing!

rockdrummer

My bad.. I thought you knew my story. It's around here somewhere in a thread.