Hi. It's been awhile!

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deafmama78

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Hi. It's been awhile since I was here last. I had my late 6 mos CI mapping apt at the end of Jan. My audiologist wanted me to do a series of 3 sentences test and I did awesome! Except the last one, I scored 54% or 45% [don't remember which] and it was cause it was a man's voice via recording, which I am not used to!

Then I had an appt March 11th to discuss going bilateral, but we found out insurance didn't approve the referral just yet for the consult.

Well. . . yesterday, we got a letter in the mail telling us that we now have a referral for the Dr's appt and for my CI surgery! It said something along the lines of "Patient had unilateral cochlear implant surgery last year with her Dr., and would like to have her other ear done. Patient has a good report with Dr."

So we called my surgeon's office at the hospital and they set me up to come in at April 1st to see him!

This means that if all goes well, and if I decide to really go bilateral, my surgery could be as soon as May-June! Ack!

I'm still thinking about it though. I don't wear a hearing aid on the non implanted ear, which is why i'd like to get anotoher CI. I love hearing out of both ears, as I like things to be even. Call me weird if ya want. :P

Anyhoo, I'll keep ya updated as to what I've decided on doing.

It's SO hard to believe that jsut a year ago, I was on here terrified of getting my 1st CI done and now here I am, thinkiing about going thru the whole ordeal again. I don't know if you guys remember, but I was one of the unlucky few who were in pain longer than most CI'ers after surgery and I had a sswllen eye, that actually swelled shut so I ahd to deal with the 2 hrs car ride barely 24 hrs after I got home from the surgery. My swollen eye, which as also bruised red/purple/black was from a "bed battle" meaning I was fighting the nurses when I was coming out of anthesia, I was asleep so I had no idea taht I was trying to get up to get up and use the restroom. Ha.

One would think that alone would shy me away from getting the 2nd CI done, eh? :)
 
scored xcept the last one, I 54% or 45%
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On the other hand, I think that you might be able to get more speech perception out of another CI.
 
Congrats on how well its going! I wish I could get my other ear done too!
 
Sounds like you are doing well. I can see a second CI really helping out. A tough decision for sure.

No, I won't be joining the bandwagon for a second one. :D
 
deafdyke said:
On the other hand, I think that you might be able to get more speech perception out of another CI.
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Well, my first two test scores were like 100% and 85% because it was my audiologists voice then for the test where I scored either 54% or 45% she used a recording, of a male voice so that was harder for me. And I was not able to lipread my audiologist even if I wanted to 'cause the windows makes it hard to see plus she still insists on covering her mouth.

I asked her if the 2nd Ci will help me understand speech even more. . . see I told her I was shocked to score 100% at only 6 mos post op. I told her that I find it hard to believe that I even had 89% at 3 mos post op. She said I was one of the star CI'ers. She then went on to explain that since I was already doing sooo well with just one Ci, she didn't think that the 2nd Ci would do much more for speech, but would help greatly in localizing sounds, etc. . . and I explained that I like to hear things evenly. It's been hard for me the last 7 yrs to hear with only one side. For 6 yrs I was using my left hearing aid as I was unable to wear my right hearing aid. I have a Ci in my right hear and stopped wearing my left hearing aid. I want to hear things out of both ears again just like the way I grew up. Maybe it's a comfort thing for me. I dunno. lol.

Part of me is telling myself that I'm crazy for even thinking about doing this. The other part of me is reminding myself that I had always wanted to hear out of both eyes again, which is one of the reasons I had my 1st Ci. I had no idea that I'd completely stop usig my hearing aid 2 mos later. Heh.

Sorry for the ramble.. . I tend to do that when I'm overthinking things. :)
 
Good luck getting the other ear done. One of the lastest numbers I have heard is you will be one of around 1,300 in the world bilateral. I wonder how hard it is to get the two CIs to work together? I had my ears done together, so they just work together naturally. I look forward to your experiences. And welcome back.
 
vallee: You asked a great question! I never thought of asking. I'll ask the surgeon/audiologist 'bout how hard it'd be to get two CI's to work together esp a year apart from each other. :)

vallee said:
Good luck getting the other ear done. One of the lastest numbers I have heard is you will be one of around 1,300 in the world bilateral. I wonder how hard it is to get the two CIs to work together? I had my ears done together, so they just work together naturally. I look forward to your experiences. And welcome back.
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Deafmamma.

welcome back to AD...

I do know what your feeling about having 2nd done..

thats what I did.. i was suppose to get 2nd done in 2005 but i back out. due of panic attacks I was having since then, so then I decide to go for it, so I made appt last summer, and saw doctor, audiologist , social worker, etc then I got approve for my right ci (2nd) on the day before my birthday. I was so happy then I had my ci done on Jan 3rd surgery, Hook up Feb 11. to be honest, I really do much better with both because all of my life i use both HA on both ears. now I have CI I use both ears :)


wendy
 
Good luck Deafmama78! I have no regrets at all about getting stereo sound. :)
 
Deafmama, Just wondering..............what's the hearing status in your unimplanted ear? You might have mentioned it before, but refresh my memory.
If you have severe tintitas/ really poor/pretty much zero perception of sound.............I'd go for it. I totally would. But then again, there's always the possibilty that a newer hearing aid, might be just as good as a CI. (Not against CI.....just working from the possibilty that some of the newer hearing aids, might work well for you......just such a crapshoot you know?)
 
WBHarley: I was the same way, I had hearing aids in both ears all my life and loved it. So, that's what I want now, with CI's. I wore my HA on my non implanted side but it feels like I'm hearing barley anything due to the CI working so well. My audi said it was normal, happens to alot of her CI'ers. I plan on talking about seeing about getting a loaned hearing aid to try it out until my scheduled date of surgery and if HA's didn't really get better for me tinnitus wise, then I'll just go directly to the 2nd CI. I have tinnitus and vertigo issues now when I did wear my hearing aids. :( CI's doesn't give me tinnitus like HA's does! I still get slight tinnitus but it's very rare and it doesn't drive me nuts at all, all I have to do is wear my CI a lil longer then it goes away then take it off to go to sleep. :)

Deafdyke: I have a profound-severe hearing loss. I'm not sure of the latest status of my non implanted ear since i stopped wearing my hearing aid 2 mos after being activated. Every time I put my hearing aid in, even if I were to wear it today, it feels like I can barely hear, which is strange because I don't have progressive loss and I've used the same type of hearing aids for many yrs. It may be broken though, the company sucks when it come sto fixing it. So, I want to talk to my surgeon and audi to see if they can point me to the right direction regarding trying HA's in the non implanted ear until closer to surgery, that way if it's helping to the point where I don't need CI. I will simply just cancel the surgery, if it doesn't help then I'll go ahead with it. :)
 
Sounds like you've got all the bases covered! You've got a very good and healthy "whatever works" attitude.....I was just trying to help you to "talk it out", and explore what your options are. I really do think that most people should do extensive HA trials with their unimplanted ear. Just b/c you never know what will work or not. I would test drive some of the high powered aids as well as the newer digital aids, before opting for bilateral CI.
 
deafmama78 said:
Deafdyke: I have a profound-severe hearing loss. I'm not sure of the latest status of my non implanted ear since i stopped wearing my hearing aid 2 mos after being activated. Every time I put my hearing aid in, even if I were to wear it today, it feels like I can barely hear, which is strange because I don't have progressive loss and I've used the same type of hearing aids for many yrs. It may be broken though, the company sucks when it come sto fixing it. So, I want to talk to my surgeon and audi to see if they can point me to the right direction regarding trying HA's in the non implanted ear until closer to surgery, that way if it's helping to the point where I don't need CI. I will simply just cancel the surgery, if it doesn't help then I'll go ahead with it. :)
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That happened to me too. I used to keep checking the HA in the unimplanted ear to see if it was switched on, because I could never tell! It was only when I turned the CI off that I could actually verify that it was on.

Yes in the process for a second CI, it's normal for them to trial you with later generation HAs to see if they can get a satisfactory fit before CI surgery. The insurance companies have to be satisfied that all alternatives were tried.
 
Thats really good to hear you are going bilateral. Hope the CI is benefiting you in the other ear too. Convincing Insurance can be a pain, no doubt! But you are all set!! Keep all of us posted here on how the second one goes! :)
 
Got the date. . .

Of surgery, which will be Thursday May 8th. I just found out today while I was at my in law's as I stopped over there after picking up my daughter & her friend from school. My In laws live right by the school so we swung by to pick up my 5 yr old. While there, my husband IM'd me on my SK3 saying "Surgery, May 8th good for you? :)" Hinting at me that he got the date, knowing that I'd be fine with the date. I was worried they'd schedule it a day-two before my girls' dance recital but luckily I have a week to recover and even if I am in pain or don't feel well, I'll be able to handle going for only 2 hrs then dinner afterwards to celebrate as it will be my youngest' first recital! So we'll have two things to celebrate in May! Also it's great 'cause we're going up to Mackinac Island right after my daughter's last day of school with her girl scouts troop, so I should be activated just in time before we leave. Woohoo!!! I'll get to be in a fun place getting adjusted to two CI's! I am so freaking excited!!!!
Time to change my siggy! :]
 
Ooooh! That's just around the corner! How exciting! Congratulations, deafmama!! :)
 
How exciting! :) That is not so long away.

I have a 5 year old daughter too. It's a really lovely age isn't it and I'm so enjoying her first year of school.
 
deafmama78 said:
Hi. It's been awhile since I was here last. I had my late 6 mos CI mapping apt at the end of Jan. My audiologist wanted me to do a series of 3 sentences test and I did awesome! Except the last one, I scored 54% or 45% [don't remember which] and it was cause it was a man's voice via recording, which I am not used to!

Then I had an appt March 11th to discuss going bilateral, but we found out insurance didn't approve the referral just yet for the consult.

Well. . . yesterday, we got a letter in the mail telling us that we now have a referral for the Dr's appt and for my CI surgery! It said something along the lines of "Patient had unilateral cochlear implant surgery last year with her Dr., and would like to have her other ear done. Patient has a good report with Dr."

So we called my surgeon's office at the hospital and they set me up to come in at April 1st to see him!

This means that if all goes well, and if I decide to really go bilateral, my surgery could be as soon as May-June! Ack!

I'm still thinking about it though. I don't wear a hearing aid on the non implanted ear, which is why i'd like to get anotoher CI. I love hearing out of both ears, as I like things to be even. Call me weird if ya want. :P

Anyhoo, I'll keep ya updated as to what I've decided on doing.

It's SO hard to believe that jsut a year ago, I was on here terrified of getting my 1st CI done and now here I am, thinkiing about going thru the whole ordeal again. I don't know if you guys remember, but I was one of the unlucky few who were in pain longer than most CI'ers after surgery and I had a sswllen eye, that actually swelled shut so I ahd to deal with the 2 hrs car ride barely 24 hrs after I got home from the surgery. My swollen eye, which as also bruised red/purple/black was from a "bed battle" meaning I was fighting the nurses when I was coming out of anthesia, I was asleep so I had no idea taht I was trying to get up to get up and use the restroom. Ha.

One would think that alone would shy me away from getting the 2nd CI done, eh? :)
Click to expand...

Awww... Don't be shy about get your 2nd implants. Just ignore deaf people who are Anti-CI. Let them go! Just be yourself to be happy and can hear again. The important who you're and make decide want to hear. My little cousin has 2 implants. He is only 5 half years old. He never see any deaf world yet. His mom won't allow him to around with deaf world like I did. I used to be in deaf world before. I stayed away from them because of gossip and stabbing back. The most deaf people coming from Gallaudet do against CI. Many deaf people do against Miss Deaf America "Heather Whitestone" because she didn't interest into deaf community through her oralism. They're jealous of her. She has 2 implants now. She is same as your hearing loss after get CI then other ear get hearing loss to decide got second implants.

I has 90% profoundly deaf. I will get an implant in few years later. I want to wait to get pregnant. I want to be experience with my first baby if I can hear the voice or not. My soon to be husband have 2 insurances and will pay me CI. I don't care what my classmates think about me. Other deaf people went to school with me in High School. They are snob and rather to be SMART COOL DEAF GROUP. They were rejected on me for no reason. They're not worth to be my friends anyways. Many deaf people are judge on other deaf and hoh about oralism and S.E.E sign. When the kids transfered to deaf school from mainstream school.

Have a good luck for your second surgery. Let pray! God will heal you to hear. :) Just be happy to hear.
 
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