CI soon...CI friendly only please

#1
Hi, all

I wanted to start a thread as like a journal for all to read and give me tips and support.
My surgery is set for May 24, 06 and it's getting closer everyday.
I have progressive hearing loss since I was 2 and worn HA in my left ear for 25 years. I have no residual hearing in my right and that's the one I 'm getting the CI implanted in. Over the years, everyone sounded like they we're speaking foreign languages and I'm always saying "what", they even try to spell and I still cannot understand. I've never learned ASL and even in school, they tried to teach me, I told them no, I haven't regret it either becasue who was I going to communicate with ASL? Everyone around me, (small town) spoke and uses gestures and I relied on lip-reading.
I went to doc recently to get my hearing checked because I was afraid that it did declined, boy was I right, but beyond my expectation of how much loss I had. I thought I would be in my 40s or 50s before I even decide on getting a CI, but my ear will not have it any other way lol.
My ct scan was great (no huge ossification from the menigitis) I picked the Nucleus Freedom in brown. Cannot wait to hear out of that ear, even if it's something I won't even understand, but I will practice and stay committed to getting the best out of my future CI.
Any advice would be great and please do not post if going to be rude or against my choice. My Choice. I will keep updating and hope for the best result I can get with the CI.
Thanks and have a good one!
Stacie
 
#3
Stacie,

Congrats. Some of us are definitely interested in how it goes.

I know the feeling of having to decide on getting one sooner than expected. I figured that I would be maybe looking at one in my late 50's or 60's. But noooo, that did not happen and here I am having to get one at 47 (last year). However, I have been very pleasantly surprised and loving every minute of it and even muttering sometimes "Where was this when I was younger?"... :D

I have mentioned before the operative word is patience. You may do very well at first or you may struggle some for a while...who knows. Don't lose heart and stick with it.

I think R2D2 is getting hers around the same time as you (can't remember when). So, you are not alone in your journey at this time.
 

Cloggy

New Member
#4
Stacie,

Excellent idea to start this thread. You'll get lot's of information here from people who have been there.. (That excludes me.)
Me, I only read about it; two books that have been recommended in this forum before. ("Rebuilt" by Michael Chorost and ...about a HOH woman who get's CI. forgot the title and someone borrowed the book....)

They show it's a tough and well-worth journey.
I'm sure you will enjoy it.
 

R2D2

New Member
#5
Hi Stacieleigh,

I'm watching your journal with much interest - I think it's a great idea. I think that many people here would be interested in how it actually all works and what happens.

My surgery is set for 9th June - 2 weeks after you! I think I've seen some of your posts on CIhear.

If there are any rude comments on your thread then just ask the mod to remove them.
 

Cloggy

New Member
#7
Books about getting - and getting used to CI..

Cloggy said:
.............
Me, I only read about it; two books that have been recommended in this forum before. ("Rebuilt" by Michael Chorost and ...about a HOH woman who get's CI. forgot the title and someone borrowed the book....)
.......
Adding the title of the other book... (Just got it returned)
"Wired for Sound - A journey into hearing" by Beverly Biderman

Some others on the forum read it and enjoyed it. Same for "Rebuilt"
 

neecy

New Member
#8
Wishing you all the luck possible!!! There are several of us who have shared our CI stories here, and feel free to ask ANY questions you might have. I know how you feel, the mixture of nervousness and excitement. My only advice right now is to keep your expectations at a minimum - that way ANYTHING is a bonus (that's the attitude I had when I got mine.) Its going to be an amazing experience,and I hope you will share it with us!!!

Welcome to the board!
 
#9
Thanks everyone, I will keep it updated and will list all the pros and cons lol.
I'm even going to make scrapbook of it and videos.
I do have a question......with the headpeice, can you feel it or don't even noticed it's there?
Thanks
Stacie
 
#10
R2D2 said:
Hi Stacieleigh,

I'm watching your journal with much interest - I think it's a great idea. I think that many people here would be interested in how it actually all works and what happens.

My surgery is set for 9th June - 2 weeks after you! I think I've seen some of your posts on CIhear.

If there are any rude comments on your thread then just ask the mod to remove them.
I wish you the best of luck with yours and be sure to let me know how yours went! I'm nervous and excited, and sure you are, too. lol
Thanks
Stacie
 
#11
neecy said:
Wishing you all the luck possible!!! There are several of us who have shared our CI stories here, and feel free to ask ANY questions you might have. I know how you feel, the mixture of nervousness and excitement. My only advice right now is to keep your expectations at a minimum - that way ANYTHING is a bonus (that's the attitude I had when I got mine.) Its going to be an amazing experience,and I hope you will share it with us!!!

Welcome to the board!
Thank you, I will be sure to ask questions. My expectation is low and even looking forward to hear my family and friends sound mechanical, so I can have my own little jokes lol. I researched everything I could on CI, the pros and the cons. Hopefully I have more pros.
What kind of CI you have?
Thanks,
Stacie
 
#12
Cloggy said:
Stacie,

Excellent idea to start this thread. You'll get lot's of information here from people who have been there.. (That excludes me.)
Me, I only read about it; two books that have been recommended in this forum before. ("Rebuilt" by Michael Chorost and ...about a HOH woman who get's CI. forgot the title and someone borrowed the book....)

They show it's a tough and well-worth journey.
I'm sure you will enjoy it.
I read a lot of your posts about your little girl and very happy that things are going great for her.
Thanks
Stacie
 

Audiofuzzy

Well-Known Member
#13
Good luck Stacie :)

I have one question though - you said you didn't want to learn ASL because you would have no one to use it with. Does that mean in your city is no deaf community?

Fuzzy
 
#14
StacieLeigh said:
Thanks everyone, I will keep it updated and will list all the pros and cons lol.
I'm even going to make scrapbook of it and videos.
I do have a question......with the headpeice, can you feel it or don't even noticed it's there?
Thanks
Stacie
Nope, not really. I generally don't notice either the BTE or the magnetic coil transmitter. I have gotten to the point of putting on one of my many baseball caps without knocking off the magnetic coil transmitter (rarely I do knock it off). The BTE is just my old HAs and that has been long automatic for me.
 
#15
Stacieleigh, I do not have a ci, but my daughter does. From researching and talking to those that have one, I have been told that for those that have had some hearing, upon intial activation, all male voices seem to sound like darth vader, and female voices sound like mickey mouse. This seems to fade as your brain adapts to the CI.

As for results be patient. My daughter is profoundly deaf, now she hears at 20 dbs across the board. She litterally hears better than me.
As for the freedom, it seems to be an awesome peice of equiptment. The only issues we have encountered has to do with the body worn unit. The cable keeps breaking. We have gone through three of them since march. At first, I though it was something we were doing wrong to cause the failure. This past week, a little girl in my daughters preschool classhad the same problem. Please remember though, the body worn parts (battery pack, and wire ) are not FDA approved yet. We are involved in the field testing of these peices of equpitment. I realise that you as an adult will probably not use the freedom in the bodyworn configuration, but the more info you have, the better.

Good luck! Please keep us informed. I love reading and hearing about adults that share thier experiences with CI activation. My daughter is not old enough to explain what she is hearing and how she is hearing it. So when I speak to a recently implanted adult, I can get a better understanding of what Lilly hears.
 

deafdyke

Well-Known Member
#16
have progressive hearing loss since I was 2 and worn HA in my left ear for 25 years. I have no residual hearing in my right and that's the one I 'm getting the CI implanted in
Sounds like you're a prime implant canidate! I know those with progressive losses and perilingal deafness tend to do REALLY well with implants!
 

neecy

New Member
#17
StacieLeigh said:
Thank you, I will be sure to ask questions. My expectation is low and even looking forward to hear my family and friends sound mechanical, so I can have my own little jokes lol. I researched everything I could on CI, the pros and the cons. Hopefully I have more pros.
What kind of CI you have?
Thanks,
Stacie
I have a Cochlear Freedom - was implanted January 2005, activated in April - its been an amazing year.

I also want to anwer your previous question about the transmitter coil- I can NOT feel it on when I wear it. The only thing I can feel (and thats only if I really focus on feeling it) is the BTE part.
 
#18
Good luck with the operation. :) I sincerely hope it goes well for you.

It might be good to learn ASL in case you have a problem with your cochlear implant, though. I'm not going to force you to, though. When I met one of my friends who has one, her implant wasn't working (the battery died, if I remember correctly). She was glad we could sign, so we signed to each other. Just something to think about. ;)

Of course, you could just write back and forth, too, and if you lipread well, that works too.
 
#19
gnulinuxman said:
...
It might be good to learn ASL in case you have a problem with your cochlear implant, though. I'm not going to force you to, though. When I met one of my friends who has one, her implant wasn't working (the battery died, if I remember correctly). She was glad we could sign, so we signed to each other. Just something to think about. ;)
...
Er...that is why I carry spares at all times to prevent that situation. I highly recommend that for anybody with a hearing device. ;)
 

R2D2

New Member
#20
sr171soars said:
Er...that is why I carry spares at all times to prevent that situation. I highly recommend that for anybody with a hearing device. ;)
I'm going to bulk order my batteries too and put spares in the car, home and in my handbag (you call it a purse). Also I will have some rechargeable batteries for home that I can use with the bodyworn. With hearing aids I have been so disorganised with my batteries (I'm the type to run to the store just as the power is fading!) but that is going to have to change.

Does anyone here know how long it takes charge up triple A batteries for the bodyworn?