CI--Deaf or Hearing? - Page 4

**KristinaB** · 07-15-2011, 06:11 PM

drphil - you say you had sensorineural hearing loss-till bilateral deafness. Sorry to say - once you have SNL, you have it until you die. Even though I have total deafness, I am told I still have SNL.

Shoshana · 07-15-2011, 07:58 PM

Quote:

Originally Posted by Audiofuzzy

This is certainly valid point.

If you don't mind telling me, regardless of what we were discussing,
did the implant help you to obtain at least some sound awareness and speech?
Also, even despite undesirable s/e, do you think that it did gave you at least benefits, and if yes, what do you consider them to be? ( i/e - you learned to hear? speak? recognized other sounds?)

Fuzzy

I was not Deaf all my life, I was not considered "profoundly Deaf" until 9th grade. So as far as speech goes, I was raised oral, and had many many years of speech prior to the implant.

I hear noise with the implant but I can not always tell you what it is, or where it is coming from. I can distinguish voice in a quiet room, or on a good day with a little background sound, but in public forget it. I still rely heavily on lip reading.

If I was to say one good thing about the implant it would be that it keeps my hair out of my face...lol....It does give me the ability to "hear" but again, the quality of "hearing" Id rather be without, plus the cons.

I do respect people who love their implant, Im glad it works for you!

flannery2009 · 07-15-2011, 09:05 PM

i was deaf since 18 month old. my doctor said i would never be like a normal kid or an adult. but i prove them wrong be doing what they said i couldt do. and i did it all by pushing myself. dont let anybody ever tell u that you won't survive. we just have to work harder to get better

deafdyke · 07-15-2011, 10:52 PM

Quote:

Originally Posted by jillio

Oh, yeah, there are a few around. Personally, I think we need way more of them...or at least some CODAs in the field. Talk about a paradigm shift!

That would be awesome, but the reason why there's so few Deaf friendly audis is b/c the pediatric dhh population is so tiny. I think pediatric dhh makes up something like 10% of the Dhh population as a whole.

drphil · 07-15-2011, 10:54 PM

As to whether I have a 100%SNL OR 100% deaf is the same condition-silence. No doctor or audi has mentioned to me having 100% SNL instead of using the term deafness.

Implanted A B Harmony activated Aug/07

**KristinaB** · 07-15-2011, 10:57 PM

Quote:

Originally Posted by drphil

As to whether I have a 100%SNL OR 100% deaf is the same condition-silence. No doctor or audi has mentioned to me having 100% SNL instead of using the term deafness.

Implanted A B Harmony activated Aug/07

Well - even though I was born with SNL, and am now total deaf, the audi's, ENT's and all have said that I really did not lose the SNL just because I lost all the hearing. They said that if all the parts to my ears were still there, then I will still be dealing with the SNL.

Audiofuzzy · 07-16-2011, 12:16 AM

Quote:

I hear noise with the implant but I can not always tell you what it is, or where it is coming from. I can distinguish voice in a quiet room, or on a good day with a little background sound, but in public forget it. I still rely heavily on lip reading.

If I was to say one good thing about the implant it would be that it keeps my hair out of my face...lol....It does give me the ability to "hear" but again, the quality of "hearing" Id rather be without, plus the cons.

So, the implant does help you obtain some sound, after all?

Would you say that it is harder for you to understand speech (even with the lip reading) once the CI is turned off, or it doesn't matter?

Fuzzy

Shoshana · 07-16-2011, 07:33 AM

Quote:

Originally Posted by Audiofuzzy

So, the implant does help you obtain some sound, after all?

Would you say that it is harder for you to understand speech (even with the lip reading) once the CI is turned off, or it doesn't matter?

Fuzzy

I can see you are trying to make me say it "cut and dry" when it can not be put in such a way--I hear SOUNDS but can not determine what it is, or where it is coming from....just SOUND....is that hearing? Where is the line from hearing noise and hearing/understanding speach, and other enviromental sounds?

If a car was coming from my left side I will turn to my right, in the time to react Id probley get hit by a car. (THANK GOD FOR SERVICE DOG!)

Sometimes there are benifits sure, to being able to hear some sounds (without understanding) like--The base of some music--no words and no insturments but just the core beat part (I dont know what this is called?) but by far the cons here outweight the "good".

I was saying, Id rather not hear NOISE, if I was anticipating to HEAR.

Its anoying.

I do think parents and other people need to know this, Ive met many people who think because I have the implant I hear perfectly, far from it! I think many people and parents go into having operation with the expectation that after all is said and done they will be Hearing. Hear perfectly or close to it. Need no other assistance.

MAYBE this IS true for SOME people, but not most im sure.

I recently met a woman who was late deafened and we started talking about the CI--She was expecting it to sound perfect, hear everything--Would it be right to falsley lead her on to believe this WILL happen when even with the CI she will at best reach HOH levels and MIGHT not hear such and such and such? and IF she was able to hear, who is to say it will be ANYTHING like she remembers (expecting)?

drphil · 07-16-2011, 08:02 AM

Is this a discussion in semantics- I define my deafness-silence-as the end point of my SNL? I don't perceive my deafness as a condition which is INDEPENDENT of my SNL. I haven't determined if I can be 100% SNL WITHOUT BE DEAF?
I am aware this is a computer screen where "interesting" discussions can occur.

Fortunately, my Cochlear Implant works for me-so far.

Implanted A B Harmony activated Aug/07

Shoshana · 07-16-2011, 08:07 AM

Quote:

Originally Posted by drphil

Is this a discussion in semantics- I define my deafness-silence-as the end point of my SNL? I don't perceive my deafness as a condition which is INDEPENDENT of my SNL. I haven't determined if I can be 100% SNL WITHOUT BE DEAF?
I am aware this is a computer screen where "interesting" discussions can occur.

Fortunately, my Cochlear Implant works for me-so far.

Implanted A B Harmony activated Aug/07

I am glad it works well for you!

**Lissa** · 07-16-2011, 08:18 AM

I have a cochlear implant- i have a profound bilateral sensorineural hearing loss in both ears, even with the CI I am still deaf. I still struggle to hear some stuff with my implant.

djchur · 07-16-2011, 09:14 AM

Quote:

Originally Posted by Shoshana

I recently met a woman who was late deafened and we started talking about the CI--She was expecting it to sound perfect, hear everything--Would it be right to falsley lead her on to believe this WILL happen when even with the CI she will at best reach HOH levels and MIGHT not hear such and such and such? and IF she was able to hear, who is to say it will be ANYTHING like she remembers (expecting)?

I think you need to be perfectly honest with this lady. Lots of people have expectations of HAs and CIs which are too optimistic, it's better to let them know how things really are.

Shoshana · 07-16-2011, 09:29 AM

Quote:

Originally Posted by djchur

I think you need to be perfectly honest with this lady. Lots of people have expectations of HAs and CIs which are too optimistic, it's better to let them know how things really are.

I was honest with her (I stated question for hearfuzzy because he dosent seem to understand).

I told her that CI sucess varies from person to person by situation and circumstance. That even if she sucessfull with implant she might not hear EVERYTHING and it might not sounds same as she is hoping.

I told her not to rush it, and to be sure to think if its right for her personally because its forever.

I was told the hearing ear as THOUSANDS of hair folicules (which vibrate to hit ear drum to make noise), where the implant only has 25-30 (something around that) electrodes to try to produce the sounds the thousands of hairs would of done.

I tried to give her both sides and say some people are sucessful, while others are not too happy with it. Always work to "hear". I think I gave good advice...

jillio · 07-16-2011, 12:25 PM

Quote:

Originally Posted by Shoshana

I was not Deaf all my life, I was not considered "profoundly Deaf" until 9th grade. So as far as speech goes, I was raised oral, and had many many years of speech prior to the implant.

I hear noise with the implant but I can not always tell you what it is, or where it is coming from. I can distinguish voice in a quiet room, or on a good day with a little background sound, but in public forget it. I still rely heavily on lip reading.

If I was to say one good thing about the implant it would be that it keeps my hair out of my face...lol....It does give me the ability to "hear" but again, the quality of "hearing" Id rather be without, plus the cons.

I do respect people who love their implant, Im glad it works for you!

It seems that the CI proponents always want to silence those whose implant has not proven to be the miracle it is touted to be. But there are many just like you who have not been exactly thrilled with their outcomes.

jillio · 07-16-2011, 12:26 PM

Quote:

Originally Posted by Audiofuzzy

So, the implant does help you obtain some sound, after all?

Would you say that it is harder for you to understand speech (even with the lip reading) once the CI is turned off, or it doesn't matter?

Fuzzy

Just can't stand the fact that she doesn't find her implant miraculous, can you?

**shel90** · 07-16-2011, 12:32 PM

Quote:

Originally Posted by jillio

It seems that the CI proponents always want to silence those whose implant has not proven to be the miracle it is touted to be. But there are many just like you who have not been exactly thrilled with their outcomes.

And we get the blame! Lol

jillio · 07-16-2011, 12:37 PM

Quote:

Originally Posted by shel90

And we get the blame! Lol

Yeppers. We are "CI haters", you know!

AlleyCat · 07-16-2011, 12:39 PM

Quote:

Originally Posted by jillio

It seems that the CI proponents always want to silence those whose implant has not proven to be the miracle it is touted to be. But there are many just like you who have not been exactly thrilled with their outcomes.

And I was too worried, based off my CI audi's frank comments about my tests, that I wouldn't love it. Hence why I didn't do it.

drphil · 07-16-2011, 12:39 PM

I suspect most deaf persons with a Cochlear Implant are aware NOT every deaf person can use an Implant. The statistics-Sunnybrook/Toronto of 60% of all persons considered for an Implant are rejected-should be a "reality check" for "loose talk". That is a 18-19 year timeframe with only 850 implanted-of which I was one.

Implanted A B Harmony activated Aug/07

jillio · 07-16-2011, 12:42 PM

Quote:

Originally Posted by AlleyCat

And I was too worried, based off my CI audi's frank comments about my tests, that I wouldn't love it. Hence why I didn't do it.

Exactly. You probably made a more informed decision than most.

jillio · 07-16-2011, 12:44 PM

Quote:

Originally Posted by drphil

I suspect most deaf persons with a Cochlear Implant are aware NOT every deaf person can use an Implant. The statistics-Sunnybrook/Toronto of 60% of all persons considered for an Implant are rejected-should be a "reality check" for "loose talk". That is a 18-19 year timeframe with only 850 implanted-of which I was one.

Implanted A B Harmony activated Aug/07

Which should be an indication to you that you are most certainly a member of a small minority of the deaf. That is why Deaf Culture is alive and thriving.

**Bottesini** · 07-16-2011, 01:09 PM

People here seem really confused about what sensorineural hearing loss means. The majority of SNL lies in the cochlea. It doesn't mean the nerve is damaged.

For people with patchy, damaged, or missing nerves, the CI is not going to be much benefit.

jillio · 07-16-2011, 01:11 PM

Quote:

Originally Posted by Bottesini

People here seem really confused about what sensorineural hearing loss means. The majority of SNL lies in the cochlea. It doesn't mean the nerve is damaged.

For people with patchy, damaged, or missing nerves, the CI is not going to be much benefit.

Exactly. If there is damage to the 8th cranial nerve, the CI is not feasable.

**sallylou** · 07-16-2011, 02:29 PM

Wirelessly posted (droid)

I'm always amazed when some one tells a deaf person that his/her experience is wrong, especially when that some one is HOH/deaf. Wow. Do they not get that they are invalidating experiences? Saying that their reality does not exist? I can only guess that the need to project on to others is so strong t that they are in denial about the effect on others.

**sallylou** · 07-16-2011, 02:58 PM

The medical use of the term SNHL has changed. Now, pathologies that effect the 8th nerve are called "retro-cochlear." That would include neuropathy, MS, NF2 or any thing that directly effects the nerve.

Beach girl · 07-16-2011, 03:03 PM

Quote:

Originally Posted by sallylou

Wirelessly posted (droid)

I'm always amazed when some one tells a deaf person that his/her experience is wrong, especially when that some one is HOH/deaf. Wow. Do they not get that they are invalidating experiences? Saying that their reality does not exist? I can only guess that the need to project on to others is so strong t that they are in denial about the effect on others.

So true. I find it really bizarre when a hearing person tells a HoH or deaf person that the hearing person knows all about what HoH/deaf people should do, and that somehow the HoH/deaf person is "doing it wrong" if his/her experience of many years is different from what the hearing person thinks it should have been.

Audiofuzzy · 07-16-2011, 04:45 PM

Quote:

-I hear SOUNDS but can not determine what it is, or where it is coming from....just SOUND....is that hearing?

You tell me

Shoshanna, I am not trying anything.
I am genuinely asking if you find that with your CI you find it easier to understand speech.
Like, I can not understand speech without my hearing aids yet I need to lip read, too.

So, do you too, like me, understand speech better with your CI on?

It's a simple question, can you answer it, please?

Fuzzy

Audiofuzzy · 07-16-2011, 04:57 PM

Quote:

Just can't stand the fact that she doesn't find her implant miraculous, can you?

Shoshana clearly stated she has very little help from her CI, and why.
In addition to damaged cochlea, she seem to have significant and supposedly progressive nerve damage.

That's why I am so interested if the CI helps at all with her hearing speech.

Are you so dense, or you just enjoy stirring crap so much, Jillio?

Fuzzy

**KristinaB** · 07-16-2011, 05:06 PM

Quote:

Originally Posted by Shoshana

I hear noise with the implant but I can not always tell you what it is, or where it is coming from. I can distinguish voice in a quiet room, or on a good day with a little background sound, but in public forget it. I still rely heavily on lip reading.

Quote:

Originally Posted by Audiofuzzy

You tell me

Shoshanna, I am not trying anything.
I am genuinely asking if you find that with your CI you find it easier to understand speech.
Like, I can not understand speech without my hearing aids yet I need to lip read, too.

So, do you too, like me, understand speech better with your CI on?

It's a simple question, can you answer it, please?

Fuzzy

It seems she already answered this before.

Audiofuzzy · 07-16-2011, 05:16 PM

Quote:

It seems she already answered this before.

Not about speech, she didn't.

Very vaguely, she said about hearing sound in general.

I specifically asked Shoshana if she can hear SPEECH with CI on better.

Fuzzy

07-15-2011, 06:11 PM	#91 (permalink)
KristinaB New SDIT Deacon Join Date: Mar 2008 Location: Land of the backstroke Posts: 13,767	drphil - you say you had sensorineural hearing loss-till bilateral deafness. Sorry to say - once you have SNL, you have it until you die. Even though I have total deafness, I am told I still have SNL. jillio likes this.

07-15-2011, 09:05 PM	#93 (permalink)
flannery2009 Registered User Join Date: Jul 2011 Posts: 2	i was deaf since 18 month old. my doctor said i would never be like a normal kid or an adult. but i prove them wrong be doing what they said i couldt do. and i did it all by pushing myself. dont let anybody ever tell u that you won't survive. we just have to work harder to get better Beach girl and Shoshana like this.

07-15-2011, 10:54 PM	#95 (permalink)
drphil Registered User Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,107	As to whether I have a 100%SNL OR 100% deaf is the same condition-silence. No doctor or audi has mentioned to me having 100% SNL instead of using the term deafness. Implanted A B Harmony activated Aug/07 __________________ Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07

07-16-2011, 08:02 AM	#99 (permalink)
drphil Registered User Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,107	Is this a discussion in semantics- I define my deafness-silence-as the end point of my SNL? I don't perceive my deafness as a condition which is INDEPENDENT of my SNL. I haven't determined if I can be 100% SNL WITHOUT BE DEAF? I am aware this is a computer screen where "interesting" discussions can occur. Fortunately, my Cochlear Implant works for me-so far. Implanted A B Harmony activated Aug/07 __________________ Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07

07-16-2011, 08:18 AM	#101 (permalink)
Lissa Premium Member Join Date: Dec 2007 Posts: 4,296 Blog Entries: 1	I have a cochlear implant- i have a profound bilateral sensorineural hearing loss in both ears, even with the CI I am still deaf. I still struggle to hear some stuff with my implant. jillio likes this. __________________ lissa, 23, profound bilateral sensorineural hearing loss. http://bioniclissa.blogspot.co.uk/

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07-16-2011, 12:39 PM	#109 (permalink)
drphil Registered User Join Date: Jul 2010 Location: Toronto Ontario Posts: 4,107	I suspect most deaf persons with a Cochlear Implant are aware NOT every deaf person can use an Implant. The statistics-Sunnybrook/Toronto of 60% of all persons considered for an Implant are rejected-should be a "reality check" for "loose talk". That is a 18-19 year timeframe with only 850 implanted-of which I was one. Implanted A B Harmony activated Aug/07 __________________ Get Real:Implanted Sunnybrook/Toronto -Advanced Bionics-Harmony activated Aug/07

07-16-2011, 01:09 PM	#112 (permalink)
Bottesini Joe's Friend Join Date: Mar 2008 Location: With Owl Sock Posts: 37,515 Blog Entries: 1	People here seem really confused about what sensorineural hearing loss means. The majority of SNL lies in the cochlea. It doesn't mean the nerve is damaged. For people with patchy, damaged, or missing nerves, the CI is not going to be much benefit. Shoshana likes this. __________________

07-16-2011, 02:29 PM	#114 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	Wirelessly posted (droid) I'm always amazed when some one tells a deaf person that his/her experience is wrong, especially when that some one is HOH/deaf. Wow. Do they not get that they are invalidating experiences? Saying that their reality does not exist? I can only guess that the need to project on to others is so strong t that they are in denial about the effect on others. jillio and Beach girl like this. __________________

07-16-2011, 02:58 PM	#115 (permalink)
sallylou Potterhead and Janeite Join Date: Jun 2009 Location: My own private Idaho Posts: 6,653	The medical use of the term SNHL has changed. Now, pathologies that effect the 8th nerve are called "retro-cochlear." That would include neuropathy, MS, NF2 or any thing that directly effects the nerve. __________________

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