Young mother to a deaf 2 year old

GrendelQ said:
FF, can you please post the name of the doctor who did this to these several kids (or the hospital)? I know I've researched our surgeon very carefully, and CI parents typically share feedback on any specific doctors they've encountered, but wouldn't want someone to miss taking note of this guy. Issues are available for review in the MAUDE database. But if a CI surgeon has on multiple occasions destroyed cochleas, making them unfit for use with CIs, this info. would be important to get out to the publics others could avoid him. Not that it's any comfort for these once just deaf and now even more deaf children, but I imagine all 3, 4 (? you mentioned several, how many did this doctor destroy?) must have won one heck of a lawsuit against the doctor.
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I am not going in there with you. There is ONE, not 3 or 4 but few of them had to get surgery twice in order to correct them withthe spirl in the cochlea, and they are ok. If you haven't found the link then the doctors are lucky. it was something with the law settlement.
However, i dont know what rockdrummer's son's cochlea was damaged by doctor or it is damage already? do you?
 
CSign said:
If children have some auditory access, whether it be through HA's/CI/whatever, and receive appropriate speech therapy in their early developmental years, the need for speech therapy is not as crucial as it was in the earlier years.

In other words, children aren't going to necessarily require "1-2 hours or longer"- I'm not sure if you're talking about per day or per week.

It depends on the individual needs of the child. With appropriate speech therapy in the early years, the child has theoretically already integrated most of the speech sounds with their spoken language.

For some children or people, intelligible speech is not a possibility and there is nothing wrong with that. The key is giving them the opportunity to develop spoken and signed language, and follow their lead as they grow. Early access is a crucial part of that.
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First of all, i am not going in there with you or any hearing parents becuase all kids are different.
i was in a speech therapy when i was 3 for years and know what it felt like being stuck in a speech therapy lesson. Ok.
 
GrendelQ said:
FF, can you please post the name of the doctor who did this to these several kids (or the hospital)? I know I've researched our surgeon very carefully, and CI parents typically share feedback on any specific doctors they've encountered, but wouldn't want someone to miss taking note of this guy. Issues are available for review in the MAUDE database. But if a CI surgeon has on multiple occasions destroyed cochleas, making them unfit for use with CIs, this info. would be important to get out to the publics others could avoid him. Not that it's any comfort for these once just deaf and now even more deaf children, but I imagine all 3, 4 (? you mentioned several, how many did this doctor destroy?) must have won one heck of a lawsuit against the doctor.
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There's also the girl here from Palm Beach who was implanted in spite of wispy auditory nerve and is seeking explant.

It's not really a secret that CI isn't a cure all or that bad things sometimes happen.

Maude database doesn't have everyone who failed or had problems in it. It's a lot more specific.

I also know personally more than one person implanted for whom it did not work.

It's counter productive for you to imply that deaf people are lying.
 
Bottesini said:
There's also the girl here from Palm Beach who was implanted in spite of wispy auditory nerve and is seeking explant.

It's not really a secret that CI isn't a cure all or that bad things sometimes happen.

Maude database doesn't have everyone who failed or had problems in it. It's a lot more specific.

I also know personally more than one person implanted for whom it did not work.

It's counter productive for you to imply that deaf people are lying.
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Wow, that's a pretty defensive post. Do you really feel like I'm implying you are lying about something? :hmm:

I know someone for whom it doesn't work, too. And I agree that a CI isn't a "cure-all."

I'm asking about the several children implanted by a surgeon who destroyed their cochleas and could therefore not benefit from CIs -- this sounds like something caused by a surgeon's medical malpractice rather than by a person eager to implant despite and with knowledge of obstacles that might impact success rate. I'd like to know who this dr. is and ensure this doesn't happen to another potential ci recipient.

I don't think this info should be kept secret or alluded to without doing something about it.
 
Frisky Feline said:
I am not going in there with you. There is ONE, not 3 or 4 but few of them had to get surgery twice in order to correct them withthe spirl in the cochlea, and they are ok. If you haven't found the link then the doctors are lucky. it was something with the law settlement.
However, i dont know what rockdrummer's son's cochlea was damaged by doctor or it is damage already? do you?
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Oh, you are referring to Rockdrummer's child as the one whose doctor destroyed the cochlea, I thought you meant you knew several to whom this happened. I think RD mentioned that his son had an already ossified cochlea and that they knew going in it was a longshot but tried anyway. Unsuccessfully.

I know quite a few people who have had surgery to reposition or replace the implant, but fortunately I don't believe any of them have had their cochleas destroyed in the process.
 
Frisky Feline said:
First of all, i am not going in there with you or any hearing parents becuase all kids are different.
i was in a speech therapy when i was 3 for years and know what it felt like being stuck in a speech therapy lesson. Ok.
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I thought it was your husband who has a CI, do you (or did you) as well?
 
GrendelQ said:
Wow, that's a pretty defensive post. Do you really feel like I'm implying you are lying about something? :hmm:

I know someone for whom it doesn't work, too. And I agree that a CI isn't a "cure-all."

I'm asking about the several children implanted by a surgeon who destroyed their cochleas and could therefore not benefit from CIs -- this sounds like something caused by a surgeon's medical malpractice rather than by a person eager to implant despite and with knowledge of obstacles that might impact success rate. I'd like to know who this dr. is and ensure this doesn't happen to another potential ci recipient.

I don't think this info should be kept secret or alluded to without doing something about it.
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Not at all. I feel that you are very manipulative. And that you twist things to make them say what was not intended to be said.
 
GrendelQ said:
Oh, you are referring to Rockdrummer's child as the one whose doctor destroyed the cochlea, I thought you meant you knew several to whom this happened. I think RD mentioned that his son had an already ossified cochlea and that they knew going in it was a longshot but tried anyway. Unsuccessfully.

I know quite a few people who have had surgery to reposition or replace the implant, but fortunately I don't believe any of them have had their cochleas destroyed in the process.
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Like I asked you if you remember and you did remember that doctor did not damage rockdrummers son. So, its all clear up and thats relief to know. My friend is in 40s. He didnt say why or what happened about his CI that was not working that something doctor performed mistakely. He had it when he was 5. He still speaks, and ASL. That's all I know. I learned about it during our college years which was over 15 years ago. :dunno:

Other friends who had re surgery due to the wire that didn't get in the right position somewhere in cochlea something with going into the spiral shaped that hurt her real bad when the sound turns on. Now shes OK.
 
Bottesini said:
Not at all. I feel that you are very manipulative. And that you twist things to make them say what was not intended to be said.
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Oh. I see. I feel that you are very bitter and sad and look for nastiness where it doesn't exist.
 
Frisky Feline said:
My hub has a CI. I am not. What does CI relates with being in speech therapy? :confused:
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I'd think that whether or not you had access to speech sounds via a CI or not would have a great deal of impact on how speech therapy is conducted and what it's like for the person trying to learn to speak.
 
GrendelQ said:
Oh. I see. I feel that you are very bitter and sad and look for nastiness where it doesn't exist.
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That's pure bullshit. :roll:

This thread is nothing but to jab OP for not chose CI and to suggest ASL is a difficult route.

Yeah, don't bother to try double speak me. Sure, you don't say English is easy but you did suggest otherwise.

So, whatever.
 
GrendelQ said:
I'd think that whether or not you had access to speech sounds via a CI or not would have a great deal of impact on how speech therapy is conducted and what it's like for the person trying to learn to speak.
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He speaks pretty good with HAs until he first got CI when he was 33 or 34. People thought he was hearing due to his voice. He had to be in speech therapy that his mom wanted it. He really work hard in his speech therapy for years.

I was being a rebel girl when it came to the speech therpay. It was my choice.

On a side note, i hear better than my hub for HAs.
 
How to post???

Hey! Can you PLEASE tell me how I can post on this site to ask a question?? Thank you SO much!
 
GrendelQ said:
Oh. I see. I feel that you are very bitter and sad and look for nastiness where it doesn't exist.
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http://www.alldeaf.com/hearing-aids-cochlear-implants/101025-decision-made.html#post2059895 Your post #16 in this thread kind of shows your motivations here.

GrendelQ : No, but a company cannot legally advertise something the product doesn't live up to. I expect Cochlear's products to do what they say and show they do, and to date, they've surpassed my expectations. They market the N5 in water, they cover it, we've put it to use as intended -- as a tool enabling my daughter to access sound in her everyday activities, without limitations.

Perhaps, BP, your toddler behaves differently in the pool than mine, and yours remains submerged for more than 30 minutes. I'm very familiar with how 1-6 year olds engage with the water -- and the N5 is designed to withstand that behavior. I'm impressed by the Neptune, but as an adult, I'm sure you take it on a far different voyage than my 6 year old takes her N5. I'm not telling you that you should dive or do whatever it is you do underwater with an N5. I'm not telling anyone what to do. I'm telling the OP about our experience, which remains as I described, appropriate per Cochlear guidelines, although apparently "irresponsible" and "stupid" per yours. Nothing damaged, microphones are in tip-top shape and integrity is frequently monitored (aside from me needing to remember to change the cover more often, given our rough and tumble lifestyle).

I'm not certain why you feel the need to lay down your judgment on our lifestyle or approach to wearing CIs, but I do think that what the OP could use is a little less of your 'cutting down the competition to make a commission' and a little more exploration of what you yourself experience with your Neptune. I think that freedom to conduct everyday activities without limitations is an important consideration in the selection. It weighed heavily for us. Right up there with reliability and outcomes. We made our decision accordingly.
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The bolded tends to show you people are in here for what you can get out of your CI companies.
 
Bottesini said:
The bolded tends to show you people are in here for what you can get out of your CI companies.
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I'm suggesting that he tell of his own direct experience rather than argue about brand marketing messages. How is that a negative or something I'm getting out of a ci company?
 
GrendelQ said:
I'd think that whether or not you had access to speech sounds via a CI or not would have a great deal of impact on how speech therapy is conducted and what it's like for the person trying to learn to speak.
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Is your daughter in speech therapy? How many times per week did she attend speech therapy?
 
And there's Smithr who has been trying for eons to have his explanted.

Maybe he could post about his experiences with his CI, as well.
 
Frisky Feline said:
Is your daughter in speech therapy? How many times per week did she attend speech therapy?
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No. She has not had speech therapy. But we may consider it, so I don't mean to imply that I'm against it.
 
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