Profoundly deaf - anyone like me, have CI? - Page 4

**Phillips** · 11-25-2008, 05:04 PM

Quote:

Originally Posted by Hear Again

yes, i believe there is a dvd available. if you do a google search for "cochlear implant + hear and now" you should be able to find it.

Yes I did but no luck find it?

**JClarke** · 11-25-2008, 05:04 PM

Quote:

Originally Posted by Hear Again

what kind of ci brand does your other friend have? if it's a nucleus 22, that ci is compatible with the current freedom processor.

Actually, not sure, it is pretty old one. She have brownish magnet, but not sure of these names. I am not VERY famailar with CI names.

**JClarke** · 11-25-2008, 05:07 PM

Quote:

Originally Posted by Phillips

Yes I did but no luck find it?

try amazon.com

**JClarke** · 11-27-2008, 05:45 PM

Quote:

Originally Posted by SkullChick

Yes in fact my lipreading with listening using my CI test result jumped to 85% in 3 months after activation.
At first it was loud and shocking for me but after while so I adjust to it and now I enjoyed a lot of things like tv sound better and some of speech sound much stronger and clearer but there's some sounds I can't stand like AC and toilet flushing haha
I can't use phone, I can't listen to convo clearly with more than 1 hearing person talking to me like group setting right now but I'm still happy with it.
I used to be against CI until I lost much more hearing that I can't use hearing aid without pain, dizziness, headache so I stopped and researched on info about it and decided to get CI and I'm happy I did it.
And yes current technology also convinced me to get CI because it sound so amazin and advanced in technology than I knew 10-15 years ago.
Hope that help

Quote:

Originally Posted by SkullChick

I'm bilateral sensorneutral profound loss too 95-115 db in right and 105-120 db in left but now its NR (no response) because CI destroyed my useless residual hearng and I'm 21 years old havent wore hearing aid longer than 1 week for 5 years in right ear and 16 years never wore hearing aid in left ear, I'm deaf mute use sign language and I'm in both hearing and deaf world too. And I got CI implanted in left ear.
Am I similar enough?

Skullchick, I have a question resulting to this which might impact from this, You know I have the hearing condition which I just mentioned in the thread, and I was BORN deaf which resulted to the illness from my mother - Rubella, known as german measles and I only can hear LOUD buzzy noises or jet engine noises via my hearing aids, but I mentioned that I quit it years ago and I hear NOTHING with and without, which would be such as NR. I discussed with my friends, who one of them is on waiting list for the CI, has the similar condition as I but was born hearing before the age of 4 which resulted of the hearing loss from meginitis. I am not sure if the improved technology could implant a person like myself?

Skullchick, would you prove me wrong?

**Bottesini** · 11-27-2008, 07:06 PM

Deafness Research UK : Case study : Living with cochlear implants

Above link is to a story about a woman with congenital rubella who has bilateral cochlear implants.

**JClarke** · 11-27-2008, 08:07 PM

This is what I got from the centre via email

Quote:

The technology has improved but it is the history of your hearing loss that still will determine if what you hear with an implant. Being born profoundly deaf at your age you will only be able to identify speech sounds that you can currently hear through your hearing aids. The Cochlear Implant will enable you to hear speech sounds more loudly and better at a distance which can help you with lipreading BUT the brain will not be able to recognise any new speech information by hearing alone at age 21. You need to have been implanted in early childhood to be able to recognise all speech sounds through listening alone, the brain cannot do this later in life.

You will also hear lots more environmental sounds.

**Bottesini** · 11-27-2008, 08:12 PM

Quote:

Originally Posted by JClarke

This is what I got from the centre via email

The technology has improved but it is the history of your hearing loss that still will determine if what you hear with an implant. Being born profoundly deaf at your age you will only be able to identify speech sounds that you can currently hear through your hearing aids. The Cochlear Implant will enable you to hear speech sounds more loudly and better at a distance which can help you with lipreading BUT the brain will not be able to recognise any new speech information by hearing alone at age 21. You need to have been implanted in early childhood to be able to recognise all speech sounds through listening alone, the brain cannot do this later in life.

You will also hear lots more environmental sounds.

That doesn't sound too good. Did you ever understand speech at all with hearing aids?

**JClarke** · 11-27-2008, 08:22 PM

Quote:

Originally Posted by Bottesini

That doesn't sound too good. Did you ever understand speech at all with hearing aids?

For the last 8 years, nope havent wore HAs for 8 years

Hear Again · 11-27-2008, 09:20 PM

Quote:

Originally Posted by JClarke

This is what I got from the centre via email

[/FONT][/COLOR][/COLOR][/SIZE][/FONT]

hmmm. this may or may not be true. i know someone who was born profoundly deaf and received a ci at age 18. with speech therapy and auditory training, she learned how to talk on the phone as well as enjoy tv and music. she now uses her ci to the fullest extent possible.

SkullChick · 11-27-2008, 09:41 PM

Quote:

Originally Posted by JClarke

Skullchick, I have a question resulting to this which might impact from this, You know I have the hearing condition which I just mentioned in the thread, and I was BORN deaf which resulted to the illness from my mother - Rubella, known as german measles and I only can hear LOUD buzzy noises or jet engine noises via my hearing aids, but I mentioned that I quit it years ago and I hear NOTHING with and without, which would be such as NR. I discussed with my friends, who one of them is on waiting list for the CI, has the similar condition as I but was born hearing before the age of 4 which resulted of the hearing loss from meginitis. I am not sure if the improved technology could implant a person like myself?

Skullchick, would you prove me wrong?

i cant hear jet engine right next to my left ear and never did since birth and im doing well with ci.
and i know one blogger been deaf for 30 years without hearing aid and she got some sounds but she have little bit of vibration with sound. and one girl that have NR with and without hearing aids so she never heard a sound for her whole life and shes 14 now and she can hear some sound like car blinker with 3 active electrodes the other right now is causing eye twitches so its inactive but shes happy with it. I know a girl personally went deaf at 2 from mengitis and she got ci 2 years ago and now she can uses phone.
I'm sure it'll work for you

SkullChick · 11-27-2008, 09:43 PM

Quote:

Originally Posted by JClarke

This is what I got from the centre via email

[/FONT][/COLOR][/COLOR][/SIZE][/FONT]

thats not true i never really understood speech by listening alone, never.... and im lousy lip-reader so once i got ci my lipreading improved drastically and listening alone jumped to 20% in 3 months and im 21 with no auditory training or therapy. Anyone can learn if they actually try to

**JClarke** · 11-27-2008, 09:54 PM

it would have impacted a great difference, if I had a CI, but I have been doing lip reading theapy in high school but now, since I talk to people in the hearing workplace, in the last two years, my talking and lipreading has improved dramatically without the CI (i dont have one obviously, and I never used the HA so)

**JClarke** · 11-27-2008, 10:31 PM

I was a little blunt with them and I got an reply back again see below

Quote:

all depends on what you expect a Cochlear implant to do for you?

If you expect to be able to hear more environmental sounds, assist with lipreading, alert you to someone speaking and monitor the loudness of your own voice - then given your history it should help you. A number of people use a Cochlear Implant for these purposes.

If you expect to be able hear and understand speech by listening alone through the Cochlear Implant this will not happen at this stage of your life.

I am aware of my hearing condition, I do not expect to hear and understand speech, but in bold above is an interesting part I am interested in.

Hear Again · 11-27-2008, 10:43 PM

Quote:

Originally Posted by JClarke

I was a little blunt with them and I got an reply back again see below

[/FONT][/COLOR][/COLOR][/SIZE][/FONT]

I am aware of my hearing condition, I do not expect to hear and understand speech, but in bold above is an interesting part I am interested in.

if you're really interested in giving a ci a try, i'd go for it jake. don't let this ci audi discourage you. after all, anything is possible. just because you were born profoundly deaf doesn't mean you can't fully benefit from an implant even at your age.

**JClarke** · 11-27-2008, 10:51 PM

True, Hear Again -- everyone with any condition of the hearing loss, such as for example for Skullchick, who possible have the similar diagnosis as I... but, there are cons that keeps me in an distance to it. To what the audiwhatever, has emailed to me earlier, and in bold in the previous posts sounds enough but I do not fully expect anything but it could possible help with my surroundings and the communication within my workplace. They said it should help with my background history - hearing enviroment sounds, be more alert around I and whatnot. Hmmm, interesting.

Hear Again · 11-27-2008, 10:57 PM

jake,

i've thought about what your audi wrote and applaud him/her for at least being honest. the last thing you want is to have too high of expecations only to be disappointed in the end.

you'll have to talk to more ci users with a similar hearing history to your own and then make the final decision as to whether or not a ci is right for you.

otherwise, if you feel comfortable having the ability to hear environmental sounds only (which isn't a bad thing!), you could always proceed with the implant.

**JClarke** · 11-27-2008, 11:08 PM

Yeah, I want to seek CI user's advice and professional advice to see what I can get or whatnot.

**JClarke** · 11-28-2008, 12:03 AM

I think skullchick's right about this quote below.

Quote:

Originally Posted by SkullChick

tinnitus while you wear hearing aids like you hear ringing louder than sound you're hearing through hearing aids or after you take it off you get loud ringing? just wondering

Quote:

When I wear my hearing aids for the first time in 4 years after my first retirement in 2003, I got an bad tinnitus, but when I talk, I could hear myself talk loud
Wait a minute..

The second one was my writing when it got my attention to answer skullchick's question from the other thread (pinky's) and I remembered something..... When I was wearing my hearing aids again for the first time, I could hear myself talking and it was loud....I think the CI could beneifit a bit about my communication and its surroundings around me. --- > It is not important to understand the speech, but beneifical for the enviroment sounds and its communication. Now, that's interesting.

**JClarke** · 12-06-2010, 03:16 AM

For the first time in what, 2 years of this thread - I have been in reconsideration after a couple of discussions within the CI's user's including my best friend - he now has a CI (freedom) and he got the same deafness level as mine and he can hear, and he explained to me more better and I understood more clearly what CI can benefit for.

Looks like I am contacting them again and seeking more answers as I have noticed they have the latest CI today - and see if they would help me due to my history of hearing loss.

**Jiro** · 12-06-2010, 03:19 AM

Quote:

Originally Posted by JClarke

For the first time in what, 2 years of this thread - I have been in reconsideration after a couple of discussions within the CI's user's including my best friend - he now has a CI (freedom) and he got the same deafness level as mine and he can hear, and he explained to me more better and I understood more clearly what CI can benefit for.

Looks like I am contacting them again and seeking more answers as I have noticed they have the latest CI today - and see if they would help me due to my history of hearing loss.

I see. so how can it benefit you? or rather - what do you hope to gain from it?

**JClarke** · 12-06-2010, 03:27 AM

Quote:

Originally Posted by Jiro

I see. so how can it benefit you? or rather - what do you hope to gain from it?

have you ever bothered to read the whole thread, Jiro?

**Jiro** · 12-06-2010, 03:48 AM

Quote:

Originally Posted by JClarke

have you ever bothered to read the whole thread, Jiro?

no but the last few posts of yours confused me.

Quote:

Originally Posted by JClarke

I think skullchick's right about this quote below.

The second one was my writing when it got my attention to answer skullchick's question from the other thread (pinky's) and I remembered something..... When I was wearing my hearing aids again for the first time, I could hear myself talking and it was loud....I think the CI could beneifit a bit about my communication and its surroundings around me. --- > It is not important to understand the speech, but beneifical for the enviroment sounds and its communication. Now, that's interesting.

Quote:

Originally Posted by JClarke

For the first time in what, 2 years of this thread - I have been in reconsideration after a couple of discussions within the CI's user's including my best friend - he now has a CI (freedom) and he got the same deafness level as mine and he can hear, and he explained to me more better and I understood more clearly what CI can benefit for.

Looks like I am contacting them again and seeking more answers as I have noticed they have the latest CI today - and see if they would help me due to my history of hearing loss.

so why don't you wear HA instead if understanding speech is not important?

Miss-Delectable · 12-06-2010, 03:56 AM

Have you talked with your friend from deaf club, I think her name is Karen? She got an CI in her 40s.

Anyway, hope you'll get the answer you're seeking while doing tests and whatnot.

overthepond · 12-06-2010, 04:34 AM

Quote:

Originally Posted by JClarke

I was a little blunt with them and I got an reply back again see below

[/FONT][/COLOR]If you expect to be able to hear more environmental sounds, assist with lipreading, alert you to someone speaking and monitor the loudness of your own voice - then given your history it should help you. A number of people use a Cochlear Implant for these purposes.[/COLOR][/SIZE][/FONT]

I am aware of my hearing condition, I do not expect to hear and understand speech, but in bold above is an interesting part I am interested in.

This is precisely why I went for CI, I am lousy lipreader even with HA's, it was 40% pre implant with voice in a sound booth 28% without voice - now it's in the 90's with voice.
I went in with very low expecations and hoped for 5% improvement, got far more than that but it came with tears, sweat and hard work.
People who wants CI needs to realise it's not an easy work and yes, the sounds would be awful at first but if they keep wearing it/work with the audiologist it will improve over time.
Hearing peers must accept it's not an overnight fix!!! and still need to treat people as they were pre implant. I have a friend who is in her 30's, profoundly deaf, BSL user and were implanted just before me she is doing well with her implant but her hearing peers have too much expectations of her so she is having tough time explaining to them that it doesn't work that way, however, with me I told my hearing peers just treat me as same as i was before Implant and don't expect anything more... they always have given me postive comments such as, "wow, your speech is clearer, that's good" that's it no more comments or pushing with negativity for example such as "you should hear on the phone if you could hear your own voice" or "if you heard [insert name] well on the phone why can't you use the phone with me" or when they heard something and asks me if I could hear it with CI -there were none of this. They go with the flow with me as I improve.

Good luck Jake.

Frisky Feline · 12-06-2010, 04:50 AM

My hubby got a CI in LATE 30's and he can hear more frquency and can hear the varies of high pitches. He likes it a lot than a HA.

good luck.,

Hohtopics · 12-06-2010, 06:47 AM

I got a CI as an adult after being profoundly deaf all my life.

nichola · 12-07-2010, 12:06 PM

faire -jour. i seen that film , gosh it had me in tears. very emtional, it gave me an insight into the fact that some people do better than others with implant. altough they were both happy in the end, he did alot better than she did .

**Bottesini** · 12-07-2010, 02:29 PM

Quote:

Originally Posted by JClarke

For the first time in what, 2 years of this thread - I have been in reconsideration after a couple of discussions within the CI's user's including my best friend - he now has a CI (freedom) and he got the same deafness level as mine and he can hear, and he explained to me more better and I understood more clearly what CI can benefit for.

Looks like I am contacting them again and seeking more answers as I have noticed they have the latest CI today - and see if they would help me due to my history of hearing loss.

Good luck, Jake.

Deaffy · 12-07-2010, 03:54 PM

Here's wishing you good luck JClarke..

Fl885 · 12-07-2010, 08:30 PM

Quote:

Originally Posted by JClarke

I was a little blunt with them and I got an reply back again see below

[/FONT][/COLOR][/COLOR][/SIZE][/FONT]

I am aware of my hearing condition, I do not expect to hear and understand speech, but in bold above is an interesting part I am interested in.

JClarke, wow it's been 2 years and now you are coming back to give it try, may be we end up doing it together at the same time, who knows, I wish you the best, that answer from your audi is frankly rude, I would change that audi immediately and go to someone that have a better attitude.
Go for it JClarke, keep us posted, at this stage you got nothing to lose but everything to gain

11-27-2008, 07:06 PM	#95 (permalink)
Bottesini Joe's Friend Join Date: Mar 2008 Location: With Owl Sock Posts: 37,528 Blog Entries: 1	Deafness Research UK : Case study : Living with cochlear implants Above link is to a story about a woman with congenital rubella who has bilateral cochlear implants. __________________

11-27-2008, 09:54 PM	#102 (permalink)
JClarke I.T Guru Join Date: Nov 2006 Location: Canberra, Australia Posts: 28,060 Blog Entries: 6	it would have impacted a great difference, if I had a CI, but I have been doing lip reading theapy in high school but now, since I talk to people in the hearing workplace, in the last two years, my talking and lipreading has improved dramatically without the CI (i dont have one obviously, and I never used the HA so) __________________ This is not a ASL version Owner of the Postwhore Club If you have 5,000 posts - please send me a PM requesting to join.

11-27-2008, 10:51 PM	#105 (permalink)
JClarke I.T Guru Join Date: Nov 2006 Location: Canberra, Australia Posts: 28,060 Blog Entries: 6	True, Hear Again -- everyone with any condition of the hearing loss, such as for example for Skullchick, who possible have the similar diagnosis as I... but, there are cons that keeps me in an distance to it. To what the audiwhatever, has emailed to me earlier, and in bold in the previous posts sounds enough but I do not fully expect anything but it could possible help with my surroundings and the communication within my workplace. They said it should help with my background history - hearing enviroment sounds, be more alert around I and whatnot. Hmmm, interesting. __________________ This is not a ASL version Owner of the Postwhore Club If you have 5,000 posts - please send me a PM requesting to join.

11-27-2008, 11:08 PM	#107 (permalink)
JClarke I.T Guru Join Date: Nov 2006 Location: Canberra, Australia Posts: 28,060 Blog Entries: 6	Yeah, I want to seek CI user's advice and professional advice to see what I can get or whatnot. __________________ This is not a ASL version Owner of the Postwhore Club If you have 5,000 posts - please send me a PM requesting to join.

12-06-2010, 03:56 AM	#113 (permalink)
Miss-Delectable V.I.P. Member Join Date: Apr 2004 Posts: 17,174 Blog Entries: 3	Have you talked with your friend from deaf club, I think her name is Karen? She got an CI in her 40s. Anyway, hope you'll get the answer you're seeking while doing tests and whatnot. __________________ "Walking with a friend in the dark is better than walking alone in the light." - Helen Keller

Today
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11-27-2008, 10:57 PM	#106 (permalink)
Hear Again Registered User Join Date: Jan 2005 Location: Wisconsin Posts: 20,122 Blog Entries: 6	jake, i've thought about what your audi wrote and applaud him/her for at least being honest. the last thing you want is to have too high of expecations only to be disappointed in the end. you'll have to talk to more ci users with a similar hearing history to your own and then make the final decision as to whether or not a ci is right for you. otherwise, if you feel comfortable having the ability to hear environmental sounds only (which isn't a bad thing!), you could always proceed with the implant.

12-06-2010, 03:16 AM	#109 (permalink)
JClarke I.T Guru Join Date: Nov 2006 Location: Canberra, Australia Posts: 28,060 Blog Entries: 6	For the first time in what, 2 years of this thread - I have been in reconsideration after a couple of discussions within the CI's user's including my best friend - he now has a CI (freedom) and he got the same deafness level as mine and he can hear, and he explained to me more better and I understood more clearly what CI can benefit for. Looks like I am contacting them again and seeking more answers as I have noticed they have the latest CI today - and see if they would help me due to my history of hearing loss.

12-06-2010, 04:50 AM	#115 (permalink)
Frisky Feline Registered User Join Date: Jun 2003 Posts: 20,239	My hubby got a CI in LATE 30's and he can hear more frquency and can hear the varies of high pitches. He likes it a lot than a HA. good luck.,

12-06-2010, 06:47 AM	#116 (permalink)
Hohtopics Registered User Join Date: Aug 2008 Posts: 1,033	I got a CI as an adult after being profoundly deaf all my life.

12-07-2010, 12:06 PM	#117 (permalink)
nichola Registered User Join Date: Sep 2010 Posts: 33	faire -jour. i seen that film , gosh it had me in tears. very emtional, it gave me an insight into the fact that some people do better than others with implant. altough they were both happy in the end, he did alot better than she did .

12-07-2010, 03:54 PM	#119 (permalink)
Deaffy Registered User Join Date: Nov 2009 Location: ohio Posts: 592	Here's wishing you good luck JClarke.. __________________ Experience is the best education one can ever have. RIGHT EAR Implanted 7-16-10 Activated 8-10-10 Nucleus 5 LEFT EAR Unaided deaf.

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