CI--Deaf or Hearing?

[jillio]

from my own experience with the different four audiologists and they know nothing about ASL. I had to talk to them by writing back and forth. of course they support the idea of having the sound such as "to hear!".

Needless to say, I do wear HAs and ASL user.

Yeppers. Most audis have a medical perspective and are big supporters of audism.

 

[Frisky Feline]

I do know a deaf audiologist.

LOL I have not met a deaf audiologist yet.

 

[Shoshana]

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!

Ive had the same audiologist since I was diagnosed at age 6 (im 19 now), She started losing her hearing and has purple hearing aids now She is like family really!

 

[Audiofuzzy]

What I am saying is, if an individual is at higher risk for such and such to happen--they should be told before the implant and let them make the choice themselves--if they want to risk or not is up to them.

Yes, but we were actually talking about different subject - we were talking about the fact how CIs are designed for people with sensori-neural loss, which does include some nerve damage, right?

Of course, I agree one can not have 100% nerve loss but if there is some nerve that is still working, chances are the implant will work, too.

So, logically, from that POV, the doctors are right, aren't they?

Now, the separate subject is, whether or not the nerve damage is progressive, and how fast it is.

Do people should be told about this? Yes, I think they should,
but is a 15 years old capable of understanding such a complicate medical issue and more over, to make a decision for herself?
I doubt most of them can, and anyway usually the children until they reach maturity remain under their parent's responsibility.
It's the law. The parent's have to make the decision for them.

I was wondering why the rush in your case. I am guessing - perhaps exactly because of your losing the auditory nerves?...
Perhaps the doctors thought it will help you to learn as much sound and speech before you lose it more and more, and after that the brain "remembers".

Sorry it didn't work out for you.
Or maybe it did, maybe all what you can hear now is thanks to CI but unfortunately it came with unfortunate side effect (vertigo, and ??)..

Fuzzy

 

[jillio]

Ive had the same audiologist since I was diagnosed at age 6 (im 19 now), She started losing her hearing and has purple hearing aids now She is like family really!

That is cool.

 

[jillio]

Yes, but we were actually talking about different subject - we were talking about the fact how CIs are designed for people with sensori-neural loss, which does include some nerve damage, right?

Of course, I agree one can not have 100% nerve loss but if there is some nerve that is still working, chances are the implant will work, too.

So, logically, from that POV, the doctors are right, aren't they?

Now, the separate subject is, whether or not the nerve damage is progressive, and how fast it is.

Do people should be told about this? Yes, I think they should,
but is a 15 years old capable of understanding such a complicate medical issue and more over, to make a decision for herself?
I doubt most of them can, and anyway usually the children until they reach maturity remain under their parent's responsibility.
It's the law. The parent's have to make the decision for them.

I was wondering why the rush in your case. I am guessing - perhaps exactly because of your losing the auditory nerves?...
Perhaps the doctors thought it will help you to learn as much sound and speech before you lose it more and more, and after that the brain "remembers".

Sorry it didn't work out for you.
Or maybe it did, maybe all what you can hear now is thanks to CI but unfortunately it came with unfortunate side effect (vertigo, and ??)..

Fuzzy

Sensorineural loss is the result of damage to the 8th cranial nerve, or auditory nerve.

 

[Shoshana]

Sensorineural loss is the result of damage to the 8th cranial nerve, or auditory nerve.

Yes, and Yes I was a minor so it was my parents call.

We are actually talking about same thing.

The Doctors are able to do test and determine, in my case the fluctuation is related to the nerve damage loss (since once loss in the cochlea is perminant and will not fluctuate). If anyone had fluctuating hearing loss all their life they should be taking around the implant differently.

Yes, they tell you all risk before hand but try to water it down by "very very slim chance" and other such wording where in reality its a much higher possibility.

I have no dought in my mind if my parents were told that eventually the implant will not be able to help her they would of taken different path (signing), they wouldn't of cut my head open for something that would only work 5-8 years or so...what about rest of my life? I am stuck with this in my head forever.


The CI can be touchy subject here with such, but fact is every person is different and not all fall into "the book".

There could be people who do great with the nerve loss and the implant, not saying they will not, but different peoples body react different to it so should be presented as such as it pertains to the individuals condition, and situation.

 

[Audiofuzzy]

There could be people who do great with the nerve loss and the implant, not saying they will not, but different peoples body react different to it so should be presented as such as it pertains to the individuals condition, and situation.

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

 

[jillio]

Yes, and Yes I was a minor so it was my parents call.

We are actually talking about same thing.

The Doctors are able to do test and determine, in my case the fluctuation is related to the nerve damage loss (since once loss in the cochlea is perminant and will not fluctuate). If anyone had fluctuating hearing loss all their life they should be taking around the implant differently.

Yes, they tell you all risk before hand but try to water it down by "very very slim chance" and other such wording where in reality its a much higher possibility.

I have no dought in my mind if my parents were told that eventually the implant will not be able to help her they would of taken different path (signing), they wouldn't of cut my head open for something that would only work 5-8 years or so...what about rest of my life? I am stuck with this in my head forever.


The CI can be touchy subject here with such, but fact is every person is different and not all fall into "the book".

There could be people who do great with the nerve loss and the implant, not saying they will not, but different peoples body react different to it so should be presented as such as it pertains to the individuals condition, and situation.

Agree with everything you have said.

 

[drphil]

It is a truism of medicine that everyone is "different". Thus doctors try to Help YOU.
As for sensorinueral hearing loss-that is the type I had over 40 years-till bilateral deafness in December 2006.At that point started the process of being evaluated at Sunnybrook/Toronto re Cochlear Implant. Successful operation-July 12, 2007.

I have mentioned before-knew I would eventually would become deaf after losing all hearing Right ear-Feb/92. The doctors-ENT clinic St Michaels/Toronto duly advised after eliminating I had "cancer/tumours etc" which could explain the problem. I also knew my loss was Genetic-for a long time on my father's side. That is why I enrolled in Cdn Hearing Society/Toronto" Hearing Help" courses. Read a great deal about Cochlear Implants and even took 3 Intro ASL courses-Toronto, I stopped when the futility of trying to learn without a lot of practice in part from NOT knowing any deaf/Deaf person personally About 15-16 years ago.
.
From my experience of 4 years use of my Cochlear Implant-works better than I expected.

Previously mentioned facts from Sunnybrook/Toronto patients meeting their experience over 18 years-60% of all persons evaluated were rejected on various grounds. In the same time frame 850 persons implanted-of which I was one. The numbers will change a bit since in part because of recent increased OHIP funding- more implant operations.

Implanted A B Harmony activated Aug/07

 

[KristinaB]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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!