CI soon...CI friendly only please

[Gwyddbwyll]

I scored 90% on the monosyllabic (single word) comprehension test - which Dr Pijl said was better than HE scores on that test, so I was really happy. But the best was when I scored 99.5% on the sentence recognition test. I was absolutely thrilled!! My hearing just keeps getting better and better.

Wow that's incredible - congratulations! Have you had your implant for 18 months? Are you post-lingually deaf?

I scored 3% on the mono single words. It was almost impossible. I cant conceive what it's like to get 30% let alone 90%. That's definitely a very high score for any CI user from what I've read.

 

[sr171soars]

...

I scored 3% on the mono single words. It was almost impossible. I cant conceive what it's like to get 30% let alone 90%. That's definitely a very high score for any CI user from what I've read.

Yes, neecy is to be congratulated for her success with her CI. To me, it is always good to see a fellow CIer do well.

FYI - I had similar scores and I'm not a post-lingual (I believe neecy is a post-lingual). The sentence recognition is a piece of cake (to me anyway....) and I probably did a tad less on the single words.

 

[R2D2]

Wow that's incredible - congratulations! Have you had your implant for 18 months? Are you post-lingually deaf?

I scored 3% on the mono single words. It was almost impossible. I cant conceive what it's like to get 30% let alone 90%. That's definitely a very high score for any CI user from what I've read.

Mono single words are harder to get than sentences because they lack context so in my case my mono word recognition would be lower than 30%. Fortunately this doesn't worry me too much because people don't go around very much speaking in single words (except when they are swearing!)

Another word of caution is to avoid comparing yourself to others when you are going through this whole process. Some people can on the day of their activation understand speech immediately, go home pick up a telephone and call their relative. Other people start off with a mass of noise which takes days or weeks to become recognisable sounds and it can be depressing when you are trying to get through that stage. But people in both groups are often highly satisfied with their outcomes at 3 to 6 months.

3.5 weeks post switch on male voices have just started sounding clear to me. Before they were robotic and too deep to make out. Now they actually are easier to understand than female voices. This morning I initiated a conversation with my neighbour's father who is visiting from overseas and understood everything he said. Before my implant I'd never do that! I would be too scared I wouldn't understand him and slink indoors before he'd even have a chance to open his mouth.

So I'm happy already. My confidence has come back and my energy levels have gone back up as well.

 

[Gwyddbwyll]

Good to hear about your confidence and energy. I get tired a lot from the strain of communicating - although my job doesnt require speaking to strangers, I sometimes have to talk to a lot of colleagues during the day. I had to realise that it's still going to be tiring after the activation, probably even more so and for quite a while.

There are some people I have real trouble understanding, cant imagine the relief if a CI means I dont have to be scared to have a proper conversation with them. One is an autistic guy and another is LD and they have a tendency to say anything at all with no context clues. What's worse is that no matter how much I dont want to talk, I know they probably feel it even more and so I have to put a brave face on it and not show it.

Thanks for the advice - Comparing yourself seems futile to me as there will always be someone who does better. I'm looking at it like the important thing is making progress because any improvement, no matter how small, has an exponential impact on comprehension (and consequently happiness). I have 6 nephews and nieces all aged 5 or under and my family and I can see in their development, what it must be like for the brain getting used to a CI. They can crawl around for ages and then one day just stand up and walk. Others start walking much earlier but fall over a lot. Everyone has a very different experience when it comes to the brain.

 

[sr171soars]

Mono single words are harder to get than sentences because they lack context so in my case my mono word recognition would be lower than 30%. Fortunately this doesn't worry me too much because people don't go around very much speaking in single words (except when they are swearing!)

So true! Still, it is nice to know one can catch more of them especially non sequitors...

Another word of caution is to avoid comparing yourself to others when you are going through this whole process. Some people can on the day of their activation understand speech immediately, go home pick up a telephone and call their relative. Other people start off with a mass of noise which takes days or weeks to become recognisable sounds and it can be depressing when you are trying to get through that stage. But people in both groups are often highly satisfied with their outcomes at 3 to 6 months.

While that is great advice, human nature being what it is...

I really was trying to indicated that while post-linguals do have built-in advantages with speech and dealing with environmental sounds in general, some pre-linguals can do almost as well too if not be on par. I know two other CIers that are pre-linguals and one had her's done last August and is doing remarkably well and better than originally anticipated. She was told she would probably always still do lip-reading (she still does some but not as much) She surprised me about a month ago calling me by phone and did really well!!!. The other just was hooked up about a month ago and definitely has a ways to go (it was to be expected). I do think that he will be alright in the long run and I have been encouraging him to perserve and keep at it. Both had further to go than I did and you are right that comparisons don't really explain where each person is coming from and what hurdles they had to go through (and the fact that it isn't really a fair comparison either).

We should just celebrate with them that are able to use their CI and that they can see the improvement in their lives.

...

So I'm happy already. My confidence has come back and my energy levels have gone back up as well.

I noticed that right away after hookup and I love not being drained after a social event however long.

 

[Gwyddbwyll]

I really was trying to indicated that while post-linguals do have built-in advantages with speech and dealing with environmental sounds in general, some pre-linguals can do almost as well too if not be on par.

I'm glad you did - I'm pre-lingual as well, deaf for over 20 years and was having to adjust my expectations not to do as well as the ideal candidate (post lingual, short period of deafness). It's good to know some do very well.

I just read in Bev Biderman's book that a study showed that after 5 years, there's no clear difference in the performance of post and pre linguals.. the pre-linguals generally just take longer to develop those neural pathways..

 

[neecy]

Wow that's incredible - congratulations! Have you had your implant for 18 months? Are you post-lingually deaf?

I scored 3% on the mono single words. It was almost impossible. I cant conceive what it's like to get 30% let alone 90%. That's definitely a very high score for any CI user from what I've read.

Yes I'm post lingually deaf - had meningitis when I was 9. I've had my implant for 15 months.

 

[neecy]

Another word of caution is to avoid comparing yourself to others when you are going through this whole process. Some people can on the day of their activation understand speech immediately, go home pick up a telephone and call their relative. Other people start off with a mass of noise which takes days or weeks to become recognisable sounds and it can be depressing when you are trying to get through that stage. But people in both groups are often highly satisfied with their outcomes at 3 to 6 months.

This is so VERY true!!! I'm lucky because I'm post lingually deafened, and I have the "memory" of hearing to draw on. Everybody will be different as everybody's deafness circumstances are different. The key is - if YOU are happy that's what matters.

 

[Superfroggy]

I'm glad you did - I'm pre-lingual as well, deaf for over 20 years and was having to adjust my expectations not to do as well as the ideal candidate (post lingual, short period of deafness). It's good to know some do very well.

I just read in Bev Biderman's book that a study showed that after 5 years, there's no clear difference in the performance of post and pre linguals.. the pre-linguals generally just take longer to develop those neural pathways..

I'm post-lingual deaf since age 7 and am now age 33. I got my CI at age 29 and almost 4 years later, still cannot comprehend speech if I cannot see the person talking (i.e.- I can't have conversations on the phone). I guess it's because I had been deaf for so long, what's more, I might be one of those heavily "visually-brained" people. I suspect people like Neecy, who were deaf for a long time like myself, might be more "auditory-wired". It's fascinating in terms of how every individual's brain develops recognition of sound with a CI.

However, I don't consider my CI to be a "failure" even after nearly 4 years of not being able to comprehend "unseen" speech. I consider it a success to be able to hear anything at all, considering that I was totally profoundly stone deaf before the CI, and like others have delightfully expressed here, I LOVE not having to strain anymore in conversations with people-- even strangers-- and don't need to "hide" any more for fear of not understanding someone. The greatest benefit of my CI is the HUGE impact it has made on my ability to lipread, because it helps fill in the blanks!

 

[sr171soars]

I'm post-lingual deaf since age 7 and am now age 33. I got my CI at age 29 and almost 4 years later, still cannot comprehend speech if I cannot see the person talking (i.e.- I can't have conversations on the phone). I guess it's because I had been deaf for so long, what's more, I might be one of those heavily "visually-brained" people. I suspect people like Neecy, who were deaf for a long time like myself, might be more "auditory-wired". It's fascinating in terms of how every individual's brain develops recognition of sound with a CI.

...

You brought up a good point that I wanted to make about some earlier remarks...

Everybody is different in outcomes with their CIs. Some may be very similar but for others the range is very broad and not everybody can use them the same way. One person's definition of success is different than another's. All that matters if that person considers their progress a success , then it is!

 

[R2D2]

I'm post-lingual deaf since age 7 and am now age 33. I got my CI at age 29 and almost 4 years later, still cannot comprehend speech if I cannot see the person talking (i.e.- I can't have conversations on the phone). I guess it's because I had been deaf for so long, what's more, I might be one of those heavily "visually-brained" people. I suspect people like Neecy, who were deaf for a long time like myself, might be more "auditory-wired". It's fascinating in terms of how every individual's brain develops recognition of sound with a CI.

However, I don't consider my CI to be a "failure" even after nearly 4 years of not being able to comprehend "unseen" speech. I consider it a success to be able to hear anything at all, considering that I was totally profoundly stone deaf before the CI, and like others have delightfully expressed here, I LOVE not having to strain anymore in conversations with people-- even strangers-- and don't need to "hide" any more for fear of not understanding someone. The greatest benefit of my CI is the HUGE impact it has made on my ability to lipread, because it helps fill in the blanks!

Great post! This illustrates why setting your own personal goals rather than comparison against other people is so important. It also shows that viewing things in a positive but realistic light can make all the difference to how you feel about your CI.

 

[Superfroggy]

Great post! This illustrates why setting your own personal goals rather than comparison against other people is so important. It also shows that viewing things in a positive but realistic light can make all the difference to how you feel about your CI.

R2D2, yes I agree with you completely. In fact, in the beginning I did compare my progress to that of my best friend (who got her CI a month before me), and was disappointed that I could not "progress" as fast or as well as she could. She can now use the phone, understand most stuff on the radio, etc.. and I could not. Later while talking with her, she reminded me that she had years and years of "hearing practice" by wearing her hearing aids 24/7 (which I never did because HA's never worked for me). She made me feel so much better by reminding me that I must develop at my own pace and not to worry about "comparing" my CI experience to hers. That helped a lot in changing my mindset. Now I march to the beat of my own drum, and delight in each new sound breakthrough that I get-- for example, only recently I have been able to make out singer's voices (but not comprehend them) when listening to music on the radio or CD's. Before, I could not distinguish the voices from the music. One thing I found that was helpful for me in learning how to do this was to watch movies that had a lot of music in them like "The Wedding Singer", "Empire Records", etc.. by following along with the captions. Now if I listen to the same songs that were in those movies, I can distinguish the voices and their nuances even with the music in the background. Hooray!

R2D2, by the way I love reading your posts and hearing about how your CI is progressing for you. Keep your posts coming!

 

[Superfroggy]

websites for listening practice



Here are two websites that I've gone to to practice listening skills with the CI. The first one is good, lots of variety. The 2nd is a little boring and "speech therapy"-like but way better than having to go to an actual speech/listening therapist and having to listen to someone say "boat/goat" 500 times with coffee breath. If one must be bored, why not be bored in the comfort of your own home?

http://www.esl-lab.com/
http://www.manythings.org/


This last one you can download on your computer and it can convert any text on your computer to speech. Like highlighting your e-mail and listening as it is "voice-read" to you. Also kind of fun to play around with.

http://www.text-speech.com/

 

[Fragmenter]

Hello guys, just wanted to fill you all in about my CI consultation today.

In short, I am indeed a candidate for a cochlear implant. But the doctor's audiologist and I had a long talk about everything and she is afraid the implant will just drive me nuts because I am not used to hearing sounds at all. She also said parts in my brain that should have been used to process sounds may have adjusted to my hearing loss and moved on to other duties instead of processing sound input. I learned that the brain's ability to adjust duties may be one of the reasons why some people feel differences in their bodies after they receive cochlear implant. I thought this was really interesting!

She and the surgeon also thought it wise that I wear a hearing aid for 1 to 3 months trial style and see if I still want to get the implant in the end. They said that I need to keep in mind that the CI will send a wider variety of sounds to my brain so it could be more annoying than the hearing aid may be.

I was glad they were honest with me and considered about more things than just the bottom line.

As of right now, getting a loaner hearing aid isn't a priority because I've got other stuff to take care of and there's this little surgery our son is gonna undergo in just two days

So, I'll be back whenever I have time

 

[Mookie]

As of right now, getting a loaner hearing aid isn't a priority because I've got other stuff to take care of and there's this little surgery our son is gonna undergo in just two days

So, I'll be back whenever I have time

If you can not afford hearing aids, you can ask your spouse to lend you one...

 

[sr171soars]

Hello guys, just wanted to fill you all in about my CI consultation today.

In short, I am indeed a candidate for a cochlear implant. But the doctor's audiologist and I had a long talk about everything and she is afraid the implant will just drive me nuts because I am not used to hearing sounds at all. She also said parts in my brain that should have been used to process sounds may have adjusted to my hearing loss and moved on to other duties instead of processing sound input. I learned that the brain's ability to adjust duties may be one of the reasons why some people feel differences in their bodies after they receive cochlear implant. I thought this was really interesting!

She and the surgeon also thought it wise that I wear a hearing aid for 1 to 3 months trial style and see if I still want to get the implant in the end. They said that I need to keep in mind that the CI will send a wider variety of sounds to my brain so it could be more annoying than the hearing aid may be.

I was glad they were honest with me and considered about more things than just the bottom line.

As of right now, getting a loaner hearing aid isn't a priority because I've got other stuff to take care of and there's this little surgery our son is gonna undergo in just two days

So, I'll be back whenever I have time

Glad to hear you had a good and frank discussion about the whole thing. No matter what you decide...it will be cool.

I'll be thinking about your son. Just take one day at a time... When you get a chance, let us know on how it goes.

 

[R2D2]

Hello guys, just wanted to fill you all in about my CI consultation today.

In short, I am indeed a candidate for a cochlear implant. But the doctor's audiologist and I had a long talk about everything and she is afraid the implant will just drive me nuts because I am not used to hearing sounds at all. She also said parts in my brain that should have been used to process sounds may have adjusted to my hearing loss and moved on to other duties instead of processing sound input. I learned that the brain's ability to adjust duties may be one of the reasons why some people feel differences in their bodies after they receive cochlear implant. I thought this was really interesting!

She and the surgeon also thought it wise that I wear a hearing aid for 1 to 3 months trial style and see if I still want to get the implant in the end. They said that I need to keep in mind that the CI will send a wider variety of sounds to my brain so it could be more annoying than the hearing aid may be.

I was glad they were honest with me and considered about more things than just the bottom line.

As of right now, getting a loaner hearing aid isn't a priority because I've got other stuff to take care of and there's this little surgery our son is gonna undergo in just two days

So, I'll be back whenever I have time

That sounds a great consultation. I'm happy to hear that you are a candidate but also very happy also that the surgeon and audiologist are being really honest and realistic with you. It goes to show that they aren't out to make a quick buck as some people claim. I think that a decision to go for a CI will be more likely to be a success if you have realistic expectations to begin with which you can adjust as time goes on.

Meanwhile we will be thinking of your little guy and hope that he has a straightforward and problem free surgery.

 

[R2D2]

R2D2, yes I agree with you completely. In fact, in the beginning I did compare my progress to that of my best friend (who got her CI a month before me), and was disappointed that I could not "progress" as fast or as well as she could. She can now use the phone, understand most stuff on the radio, etc.. and I could not. Later while talking with her, she reminded me that she had years and years of "hearing practice" by wearing her hearing aids 24/7 (which I never did because HA's never worked for me). She made me feel so much better by reminding me that I must develop at my own pace and not to worry about "comparing" my CI experience to hers. That helped a lot in changing my mindset. Now I march to the beat of my own drum, and delight in each new sound breakthrough that I get-- for example, only recently I have been able to make out singer's voices (but not comprehend them) when listening to music on the radio or CD's. Before, I could not distinguish the voices from the music. One thing I found that was helpful for me in learning how to do this was to watch movies that had a lot of music in them like "The Wedding Singer", "Empire Records", etc.. by following along with the captions. Now if I listen to the same songs that were in those movies, I can distinguish the voices and their nuances even with the music in the background. Hooray!

R2D2, by the way I love reading your posts and hearing about how your CI is progressing for you. Keep your posts coming!

Thanks for the website links - I've been after some for a while so they will be useful.

It was interesting to hear about your experience with your friend. I suppose it is a bittersweet experience. On one hand you have someone to go through the process with but on the other it must be hard when one person does better than another at a given point in time. Your friend sounds very wise though. I have a friend who lives locally who had her CI op a year ago and I'm grateful that she is so far ahead of me because she knows all the different emotions I experience. She actually had a rocky start but loves her CI now and it looks as if she might be going bilateral.

I love reading your posts too

 

[Fragmenter]

If you can not afford hearing aids, you can ask your spouse to lend you one...

Well, gee, here's another thoughtful post from you!

How can you buy a "loaner" hearing aid? Anyway, don't worry, I'm in good hands with the people I know here

 

[Superfroggy]

Thanks for the website links - I've been after some for a while so they will be useful.

It was interesting to hear about your experience with your friend. I suppose it is a bittersweet experience. On one hand you have someone to go through the process with but on the other it must be hard when one person does better than another at a given point in time. Your friend sounds very wise though. I have a friend who lives locally who had her CI op a year ago and I'm grateful that she is so far ahead of me because she knows all the different emotions I experience. She actually had a rocky start but loves her CI now and it looks as if she might be going bilateral.

I love reading your posts too

R2, yes sometimes it is a bittersweet experience. But I've learned to look forward to my own milestones as they come. And my friend has been a fabulous resource for me-- she was the one "taught" me how to follow along while reading books and listening to the same on audio CD. I tried to do it on my own in the beginning but was confused over how to use a CD player (shows how Deaf I am, ha)-- I also got confused because I had no idea that the person "performing" the voice for audiobooks will first introduce the title and author, and then the chapter before actually starting the story. As a result, I can now follow along most books on CD, and I can even "pick up" again if I'm interrupted and miss hearing what is read, meaning I can wait a moment and find the right place to match the voiced story. I never ever thought I would be able to do that, so it was amazing. She's been a wonderful "teacher" for me.

I've read along with three of the Harry Potter books on CD, and also "The Bonesetter's Daughter" and "The Kitchen God's Wife" by Amy Tan. I was amazed to find out that with the Harry Potter books, I could distinguish the reader's (actor Jim Dale) distinct British accent, and even how he changed his voice to "play" the different characters. The part of Voldemort is very very hard for me to follow though, because it's such a high, hissing voice. Such fun! At first, Amy Tan's books were a little hard for me to follow. It's harder to understand women's voices-- maybe because they are higher pitched, and she herself was the reader on the CD's.

I'm glad you have a friend who is able to be your CI mentor as well. It is SO helpful to be able to go through it with another person.