CI Surgery approved today

:( Vent away Angel, everyone needs it now and again. :(

I'm sorry you're having all these difficulties. Keep your head up, I know it's hard right now but it can't stay bad forever, right? :aw: :hug: It can be done and I've seen it done... it's not impossible... just .... difficult. Nothing in life is easy, sometimes we just have to fight our way through something and in the end we are rewarded for our effort. I'm sure this will all work out... I'll definitely keep my fingers crossed for you. :aw: :hug:
 
Angel1989 said:
OMG I am so friggin stressed over all of this. Now I can't hear nearly as well as I did prior to my audi appointment. Everything sounds like talking into a tin can. Of course my tinnitus is roaring from all the beeps. Sorry but it sucks to be totally deaf yet everything is so loud. Taking off my CI does not help with the tinnitus. Oh and today my CI surgeon tells me that mapping a CI when someone has horrific tinnitus is almost impossible. SMH!!!

Needed to vent....sorry.
Click to expand...

I'm not sure I'd put much stock into the surgeon. His specialty is installing the thing, not programming it or testing it.

Your tinnitus is likely roaring because you really haven't been following proper programming. This is where someone should be 2 weeks later, not 2 years later. Your tinnitus will calm down as your build your tolerance and the "beeps" will begin to take shape as the high frequencies they really are when your brain recognizes them.

Tinnitus is standard for most people when implanted. Your nerve has been under stimulated for the last 2 years. Now it's being woken up and it's complaining again. Ride it out. Wear your CI as much as you can, though if you are fatigued, do take breaks.
 
The tinnitus has been there since the day I woke up from my coma. Non stop 24/7 the loudest noises almost unbearable. My CI ear the tinnitus is a lot lower, it's my unaided deaf ear that it the problem.

I do feel better with my new audi and shall see what Cochlear has to say about my backup CI not working and returning my primary CI for being broken. 2 years and both CI's need to go to Cochlear for repair. That to me is not right.
 
Last edited:
The audiologist's quality of knowledge.

Angel1989 said:
I saw my CI surgeon today. He said things all look good. Thank god there was a new audi, fresh out of school. She was so so so smart. She taught us so many different things about my CI. My primary CI has to be sent in for repair, the AC cable does not work in it. My backup CI is having issues, it won't map the same as my primary. Audi is going to contact Cochlear tomorrow and will let me know. I'm almost exactly at the 2 year mark so we have to take care of this ASAP.

Interesting....She gave us information about getting a free phone, free smoke detectors, plus other equipment for deaf people. We also found out that there is an hearing aid setting on my cel phone. I can't believe my first audi showed us nothing. I am a little upset that both CI's already need to be sent in for repairs.
Click to expand...

Some audiologists just go straight to school and do not even bother to learn anything about assistive technology and tools for deaf/hard-of-hearing individuals, let alone the Deaf culture. This blatant unwillingness to learn about the deaf/hard-of-hearing population has a direct negative impact on the quality of their clients' lives later on, such as you. Other audiologists do take the time to learn, such as your new audiologist.

Your situation highlights exactly why it is very important for any deaf/hard of hearing person who goes to an audiologist the first time around to ask the audiologist in-depth questions about his/her previous experiences with the deaf/hard-of-hearing population and knowledge of tools that enhance daily life. For good measure, also ask the audiologist for any references who are deaf/hard of hearing persons to confirm that the said audiologist has had thorough immersion in the Deaf culture. It truly makes all the difference.
 
Epic fail.

Angel1989 said:
The tinnitus has been there since the day I woke up from my coma. Non stop 24/7 the loudest noises almost unbearable. My CI ear the tinnitus is a lot lower, it's my unaided deaf ear that it the problem.

I do feel better with my new audi and shall see what Cochlear has to say about my backup remote not working and returning my primary remote for being broken. 2 years and both CI's need to go to Cochlear for repair. That to me is not right.
Click to expand...

*FACEPALM* That and the booth testing at the second appointment. Sounds like your old audiologist didn't know what the f#ck she was doing.
 
sphenix said:
*FACEPALM* That and the booth testing at the second appointment. Sounds like your old audiologist didn't know what the f#ck she was doing.
Click to expand...

It's very sad because we didn't know any better. It was my very first time seeing an Audi since I went deaf overnight. Now I know better. My new Audi is Dr. Fate:giggle: It was fate that we met.:giggle:

My husband actually told my CI doctor that we needed a new Audi. He said the past Audi didn't seem to know very much. At first I was a little embarrassed because that Audi was standing in the hall. I got over that pretty fast when the new Audi started talking to me. She wrote things down, talked slow etc. what a difference. She even knows how to sign!!!!

She emailed me just now and said she spoke to Cochlear about my backup CI and they want me to send it in for a replacement. So both my CI's primary and backup are going to get replaced.

What is super cool....When Cochlear replaces my CI's they will be programmed exactly like mine is now and mailed to ME, my house, from Cochlear. No going back to the Audi.

I have a followup in one month and I am finally excited about actually going to see my Audi.
 
Thanks for the support my friends. So now I know a little bit about why my original appointments did not go very well. My backup CI was not working and would not duplicate the mappings with my primary CI. It was super super frustrating.

My big issue now is WHY both CI's need to be replaced after just two years? As most of you know I stay at home a lot. MY CI's have not been abused, not even close.
 
Angel1989 said:
Thanks for the support my friends. So now I know a little bit about why my original appointments did not go very well. My backup CI was not working and would not duplicate the mappings with my primary CI. It was super super frustrating.

My big issue now is WHY both CI's need to be replaced after just two years? As most of you know I stay at home a lot. MY CI's have not been abused, not even close.
Click to expand...

Just my 2 cents even though I do not have a CI of any brand. It sounds to me like it was defective from the beginning and should have been returned to Cochlear at that time. All CI's are man made objects and how well they do will be somewhat unpredictable just because of that.
 
Jane B. said:
Just my 2 cents even though I do not have a CI of any brand. It sounds to me like it was defective from the beginning and should have been returned to Cochlear at that time. All CI's are man made objects and how well they do will be somewhat unpredictable just because of that.
Click to expand...

Since I only have one implanted CI, the backup was never used. It sat in the box and was only taken out when the Audi was trying to program it. The first Audi I saw didn't know what she was doing. The new Audi just figured out that my backup had issues hence returning it now. My primary CI has been fine up to just a few weeks ago when the AC plug stopped working. Now we are in touch with Cochlear and it seems like they will handle this issue.
 
Angel1989 said:
Since I only have one implanted CI, the backup was never used. It sat in the box and was only taken out when the Audi was trying to program it. The first Audi I saw didn't know what she was doing. The new Audi just figured out that my backup had issues hence returning it now. My primary CI has been fine up to just a few weeks ago when the AC plug stopped working. Now we are in touch with Cochlear and it seems like they will handle this issue.
Click to expand...

Sounds like they had a bad batch of CI's. I've had both of mine over 5 years and they've never given me any problems at all. But my back up CI isn't really my back up. Both of them are my primary CI and both are my back up. I switch back and forth every so often since I've had them to make sure nothing messes up with one so if something happened to one and I switched to the other I won't find it dead at the same time. Did that mainly when I first got them to make sure they were perfect while still under warranty.
 
ncff07 said:
Sounds like they had a bad batch of CI's. I've had both of mine over 5 years and they've never given me any problems at all. But my back up CI isn't really my back up. Both of them are my primary CI and both are my back up. I switch back and forth every so often since I've had them to make sure nothing messes up with one so if something happened to one and I switched to the other I won't find it dead at the same time. Did that mainly when I first got them to make sure they were perfect while still under warranty.
Click to expand...

That is really a good idea. I tried a couple times but my "backup" never seemed to work right. I thought it was my programming. I have brain issues that make things more difficult. My surgeon says I am very "unique" case.

I'm pretty frustrated right now, the mapping done yesterday has decreased my hearing significantly. I need the volume turned all the way up on my CI and the volume extra loud on my tv. I'm struggling to hear, have a massive headache, nauseous etc. SO I just said **** it and took it off which I have not done in over a year. I will give it a few more days, if no changes I am going back to my old programming. It might just be as good as I can get.
 
Hopefully your new Audi can get everything squared away right when they come back from being repaired. But I'm sure that's frustrating, especially with the tinnitus, to wait until then. Did you ever get a hearing aid or was that never an option? Just wondered if you could wear one while you wait, to see if that helps the tinnitus.
 
AlleyCat said:
Hopefully your new Audi can get everything squared away right when they come back from being repaired. But I'm sure that's frustrating, especially with the tinnitus, to wait until then. Did you ever get a hearing aid or was that never an option? Just wondered if you could wear one while you wait, to see if that helps the tinnitus.
Click to expand...

Thanks AlleyCat...Hearing Aids were never an option for me, no hearing remaining at all. My new Audi is gone for two weeks she is graduating college.
I'm giving it another go today and hopefully things will be a little better. Cochlear has already been contacted and they are sending me two "refurbished" CI's and the packaging to send my CI's back to them. Not sure how long it will take. Did find out that it is a 3 years warranty not 2 like we thought.

Since I have brain issues, hyperacusis and severe tinnitus I think all that makes me a difficult patient.

I'm so lucky to have all of you here trying to help me. I would be totally lost without the information a lot of you have provided.

Thank's again.
 
Curious how many CI's users have CI insurance? Once the warranty expires I definitely think I need to get them insured.

Do I get that through my homeowners? or
Is there a special CI insurance you can get from Cochlear etc.?
 
Angel1989 said:
Curious how many CI's users have CI insurance? Once the warranty expires I definitely think I need to get them insured.

Do I get that through my homeowners? or
Is there a special CI insurance you can get from Cochlear etc.?
Click to expand...

"+''+"
 
Angel1989 said:
That is really a good idea. I tried a couple times but my "backup" never seemed to work right. I thought it was my programming. I have brain issues that make things more difficult. My surgeon says I am very "unique" case.

I'm pretty frustrated right now, the mapping done yesterday has decreased my hearing significantly. I need the volume turned all the way up on my CI and the volume extra loud on my tv. I'm struggling to hear, have a massive headache, nauseous etc. SO I just said **** it and took it off which I have not done in over a year. I will give it a few more days, if no changes I am going back to my old programming. It might just be as good as I can get.
Click to expand...

Do hope things can improve for you. Are you able to have your old map on one program slot and them try new ones on the others? That's what my friend did but it maybe her brand of CI only? Means that my friend could revert back to her old map if needed.
 
NaidaUP said:
Do hope things can improve for you. Are you able to have your old map on one program slot and them try new ones on the others? That's what my friend did but it maybe her brand of CI only? Means that my friend could revert back to her old map if needed.
Click to expand...

I will seriously look into that, so thank you. Thankfully my husband is an engineer and asks the tough questions. My new audi seemed to be able to answer them all so we were pretty happy.

I wonder if I could have one CI with the new mapping and the backup CI with the old mapping?

I've been watching and reading a lot of CI videos today, trying to learn as much as possible. The big change is in how I hear tv. If anyone has any suggestions that would be great.

I really appreciate any and all input.
 
The Esteem implant?

Hello Angel, before I begin I will have full disclosure that I have never tried cochlear implants much less hearing aids. I'm not really knowledgeable about this subject. With that said I did hear about the Esteem implant (an Envoy Medical product). I'm not sure if it would work for you, especially with the fact that you've already had surgery for the cochlear implant. I'm just throwing it out there. My mother tried to convince me to take up the Esteem implant, as she believed that I'd be an ideal candidate for it. I told her that as I was born fully deaf, to just accept me the way I was born.

If my post sounds misguided to any other person here, I offer my full apologies.

Angel1989 said:
I will seriously look into that, so thank you. Thankfully my husband is an engineer and asks the tough questions. My new audi seemed to be able to answer them all so we were pretty happy.

I wonder if I could have one CI with the new mapping and the backup CI with the old mapping?

I've been watching and reading a lot of CI videos today, trying to learn as much as possible. The big change is in how I hear tv. If anyone has any suggestions that would be great.

I really appreciate any and all input.
Click to expand...
 
Angel1989 said:
I will seriously look into that, so thank you. Thankfully my husband is an engineer and asks the tough questions. My new audi seemed to be able to answer them all so we were pretty happy.



I wonder if I could have one CI with the new mapping and the backup CI with the old mapping?



I've been watching and reading a lot of CI videos today, trying to learn as much as possible. The big change is in how I hear tv. If anyone has any suggestions that would be great.



I really appreciate any and all input.
Click to expand...


If it helps, my friends CI is a Cochlear Freedom. Her implant is super old so she's still on the Freedom processor.

Having your old map on one processor and the new on another could work, but would you have to carry your spare processor about?

My friend found she had to revert back to her old map, whiles she was out as she came across situations where she felt the old map was better. She then went back to her Audi and after some work, combined bits of her old map and a new map. She doesn't like to change to a 'noise' program that some people have for noisy places. She likes to just put her CI on and leave it for the day.

That's good that your husband can ask detailed questions.

Good Luck.


Sent from my iPhone using AllDeaf
 
Back
Top