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Re: (What is CI)

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Hi Amber,

here,

It is so nice to hear from you. Oh boy you have had a lot of surgery.

A CI means a Cochlear Implant, I have an old CI on the left ear and I'm

not sure about the nerves. The reason I think my hearing is so down in

the right is that they have taken everything out and nothing is left.

It will be interesting if I still have enough for the CI to function.

Not sure if I will try the BAHA, or another CI. Will depend upon what

they can do with such a damaged ear.

Living with hearing impairment for most of my life I've had to learn to

swallow my pride and accept hearing aids. Because of my vision loss

I've had no options but to use aids throughout my life.

A friend of mine who is not CToma have just recieved new hearing aids

and oh I cannot believe how small they are: With they were like that

when I was a kid.

During Teanage years they had to change my ear level aids to body aids

which I hated with a capital H.

Following yet another op it did improve my hearing slightely and could

use BTE aids. However after the huge op in 1991 that all went.

Thank you for your thoughts.

Regards

Quoting amber krasny <am81576@...>:

> Hi ,

>

> What is CI? It is very unsual to hear about C-toma causing hearing

> nerve loss so I am wondeirng what CI is? Most all c-toma surfers

> such as myself suffer from conductive hearing loss and still have

> great nerves. I am going on my 16th surgery still to try and get my

> hearing above the 50-60db range and will probably one of these times

> throw the towel in but I am stubborn and as long as the nerves work

> there is hope.

>

> As for being completely deaf.. that is something totally different

> unless you are completly deaf from the c-toma causing nerve damage.

> I am really curious as to how all this plays in with c-toma?

> Thank you for sharing!

> Amber

>

>

>

> From: msteven5@... <msteven5@...>

> Subject: (unknown)

> cholesteatoma

> Date: Monday, July 21, 2008, 5:56 AM

>

>

>

>

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>

>

> Hi ,

>

> s here,

>

> Good luck with your little girl and all her surgery. Tell her don't

> let

> the ops get her down there is light at the end of the tunnel. I'm

> surprised her hearing haven't been affected too much. May I suggest

> this is something you keep a close eye on. As I prevously mentioned

> as

> a child I use to get really sad to see my play-mates swimming and

> having

> fun in the water and I had to miss out. It was very strictly NO

> SWIMMING for me.

>

> Following all the surgery they created a bowl type of opening so

> water

> can come out of the ear. I am still not very good at swimming, and

> still don't like to get my head under the water. Not sure if its old

> habits, plus I feel dizzy when I do go under water.

>

> I use a support worker to come with me because without the CI i am

> totally deaf and nearly totally blind.

>

> Good luck and if your daughter wants to write and ask me questions

> with

> your permission please feel welcome to encourage your daughter.

>

> Kind regards

> S

>

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>

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>

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Thank you for responding. What i do not understand is why you have a cholear Implant? That is a totally different problem than c-toma so did you have cholear problems and a c-toma? I have never heard of being able to use a baha if you have a choclear implant. The choclear implant is because your hearing nerves do not work. See with me my hearing nerves work great, about 85-95 db. They test this by doing a hearing test with the headset behind the ear. When you have a choclear implant you have no hearing at all as the nerves are damaged. What damaged your nerves to make you need a cholclear implant. In my opinion you are going to need a new cholear implant because a baha an only work with hearing nerves that function.

Thanks again for sharing.

Amber > > From: msteven5tpg (DOT) com.au <msteven5tpg (DOT) com.au>> Subject: (unknown)> cholesteatoma> Date: Monday, July 21, 2008, 5:56 AM> > > > > > > > Hi ,>

> s here,> > Good luck with your little girl and all her surgery. Tell her don't> let> the ops get her down there is light at the end of the tunnel. I'm> surprised her hearing haven't been affected too much. May I suggest> this is something you keep a close eye on. As I prevously mentioned> as> a child I use to get really sad to see my play-mates swimming and> having> fun in the water and I had to miss out. It was very strictly NO> SWIMMING for me. > > Following all the surgery they created a bowl type of opening so> water> can come out of the ear. I am still not very good at swimming, and> still don't like to get my head under the water. Not sure if its old> habits, plus I feel dizzy when I do go under water. > > I use a support worker to come with me because without the CI i am> totally deaf

and nearly totally blind. > > Good luck and if your daughter wants to write and ask me questions> with> your permission please feel welcome to encourage your daughter.> > Kind regards> S> > > > > > > > > > > > > > > >

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