To have the Cochlear Implant at profoundly born only

[deafmama78]

Is it possible for me to have cochlear implant at 26?

Yep. Look at me, I'm 28 and I'm about to get my 1st CI this coming Thursday!

It is possible to have the cochlear at 110 dB and 120 dB?

I'm not sure as I'm not an audiologist but I have seen others get their CI despite the various level of hearing loss.

Is it worthwhile?

Yep, as long as you understand that you may not understand sounds right away & accept that it takes alot of work to practice hearing w/ the CI.

I suggest you to go to a different Audiologist, one that works with CI's. :]

Good luck!

 

[Franz K]

I think VR is a good idea. Another possibility is to contact the CI company directly. I know Advanced Bionics has a resource for this and I'm sure that Cochlear does, too. They have resources to clear insurance and doctor's hurdles, and they have more than enough incentive to get their product out there.

I like the idea of needing to be a baby again to relearn sounds. That means I get to be a big baby starting next week!

 

[R2D2]

I have recieved a letter telling that i won't be able to have cochlear implant due they said i have still to be 6mths old baby. They turned me down. Grrr I was so pissed off!

I still won't give up until i get one! Will type it more and put the info into there when i get the time and paste it there. I need some help how to get it.

Yes, good idea. If you type up your letter on here then we can have a better idea.

 

[SpaceyUFO]

Sorry for the delay! I had to remember to put the letter about the cochlear implant i have requested and it declined me.

My referral was declined as CI are not proven to provide benefit to adults who have not developed normal speech and language either through the use of hearing aids, or before becoming deaf in the case of ecquired hearing loss. This is because tthe window of opportunity to learn to use sound to understand speech closes very early, certainly prior to 4 or 5yrs of age. After this time, although we are able to provide detection of sound, the neural pathways which take the sound to the auditory cortex for translation into meaning is lost.

A number of overseas CI programmes have trialed implanting pre-lingually deaf adults who rely on sign singuage for communication. There has been no success in terms of oral language development, and in the vast majority of cases, the implanted person has opted not to use the device at all as they do not find the sound it provides to be useful. For this reason no programmes that I am aware of internationally will offer implants to pre-lingually deafened adults.

I don't agree with this and it is load of crap that I got the letter from the CI health board!

So far I have appointment to see ENT and audiology to see next week and the following two weeks time so Im looking forward to prove them wrong!

 

[Hear Again]

Spacey,

I'm 36 years old and received my first CI at the age of 34 and the second one year later, so age is definitely not an issue when it comes to implantation. In fact, I know one CI user who received her CI at 90 years of age.

As for the success you can achieve with the CI, I think Sheri summed it up best. People who are prelingually deaf can and do benefit from the CI, but it may take some work on your part to receive the kind of results you want (i.e. understanding speech and/or environmental sounds).

Believe it or not, I know one prelingually deaf CI user who was able to understand speech on the day of her activation. She is now able to talk on the phone, understand the TV and radio -- and converse with others in a noisy restaurant.

Even if you're only able to hear environmental sounds, you will be able to hear *so* much more than you do now with HAs.

 

[Hear Again]

It is possible to have the cochlear at 110 dB and 120 dB?

Yes, I believe it is. The only exceptions I can think of would be a non-functioning auditory nerve or severe ossification (depending on the degree of ossification, a double array CI could be used). I know several CI users who had 120 dB loss who were able to receive CIs. One of them is postlingually deaf and two are prelingually deaf. All three of them are doing wonderfully well with their CIs.

If I were you, I'd follow deafmama78's advice and find another audi.

Good luck!

 

[R2D2]

Hear Again,

I don't think SpaceyUFO has been turn down just because she is a prelingual. I get the impression it's because she hasn't previously developed speech through hearing aids from her childhood. Can you correct me SpaceyUFO?

SpaceyUFO - have you tried to approach another CI centre? Some have different criteria. Also, I would express the desire to hear environmental sounds and don't say anything about wanting to acquire speech. If you argue that you can acquire oral speech in adulthood, they may reply that you have unrealistic expectations. Whereas they may see a benefit in being able to hear environmental sounds. Unfortunately, it is true that it's much harder to do this when you are a grown up.

 

[SpaceyUFO]

Spacey,

I'm 36 years old and received my first CI at the age of 34 and the second one year later, so age is definitely not an issue when it comes to implantation. In fact, I know one CI user who received her CI at 90 years of age.

As for the success you can achieve with the CI, I think Sheri summed it up best. People who are prelingually deaf can and do benefit from the CI, but it may take some work on your part to receive the kind of results you want (i.e. understanding speech and/or environmental sounds).

Believe it or not, I know one prelingually deaf CI user who was able to understand speech on the day of her activation. She is now able to talk on the phone, understand the TV and radio -- and converse with others in a noisy restaurant.

Even if you're only able to hear environmental sounds, you will be able to hear *so* much more than you do now with HAs.

Yes thats right, thats what I heard the car passing from where Im sitting say around 10metre (driveway of my friends house) with my hearing aids on and it sound like roooar then soft then fade away. Toilet flushin from where im standing! There are lots of environment area like plane, tv on, music, truck passing. Plus a lady did talk to me "Hello, how are you?" (With oral no sign language). I knew what she was talking about. I know the pattern of sound like "Hello" It has got two sound in one word! But I know that it has got lots of different kinds of sound which i havne't heard. I know if i get the CI, I wouldn't be able to straight away to understand the sounds, like talking, phone, etc... It takes time to figure what sound belongs, what it is like, how many patterns, etc... I have so much believe in I will able to hear the sounds and will able to understand it but will get it there for sure!

When I was little girl, 4yrs old, I did have speech training but I couldn't understand and didn't recognise the sound. Until very late age at 18yrs old I started to recognise the sound very first word... mmmmmmmmmmm then hungry for sounds! Car passing, dog woof, door close, drawer open and close, toilet flushing, droppin the fork, knife etc.. music walkman with headphone on (it was just vibration but really doesn't understand what the song was about), cat purring, raining, windy howling, bell goes, tv on, children screaming, talking (blahhhhhh), floor stampin, chair scratches, hearing myself saying "hello", ummm what else i can think of.

I haven't heard the gun shot, mow the lawns, plane taking off lol, helicopter flyin past overhead, phone ringing, fart lol, umm thats all i can think of.

No, In new zealand we only have one hearing house.

 

[R2D2]

No, In new zealand we only have one hearing house.

I didn't realise you were in New Zealand. They have socialised medicine there and they are obsessed with "value for money" and as a result can be pretty stingy (sorry!) about who gets the CIs. So it's not like you can just switch to another CI centre with a different candidacy criteria as people in the US are able to.

I would consider writing to your local MP. Is your own audiologist sympathetic at all? Have her write a letter to support your own explaining why she thinks you could benefit from a CI. I wrote to my MP once about something here in Australia and she did try and intervene and the situation that I was writing about was resolved.

 

[rick48]

Spacey,

Have you contacted your implant center and/or the manufacturer of the device that you were going to get? They may be able to help you in getting your denial reversed.
Good luck,
Rick

 

[R2D2]

Maybe you could also PM "LTHadvocate" and ask her if she has any case studies or examples of adults similar to you who have been implanted and benefited from their implants. It would be good to supplement that to your appeal.

 

[deafmama78]

SpaceyUFO: I didn't realize you're from New Zealand! Wow. 'sigh' I'm sorry you're having to deal with all the troubles you're having now w/ getting the CI. Sucks that where you're at has socialized medicine & is just sucky!

I wish you the best of luck in finding a way to win your fight & being successful in getting the CI you want! Keep me posted please as I am curious to hear your journey on getting your CI.

Good luck!!!

 

[SpaceyUFO]

I didn't realise you were in New Zealand. They have socialised medicine there and they are obsessed with "value for money" and as a result can be pretty stingy (sorry!) about who gets the CIs. So it's not like you can just switch to another CI centre with a different candidacy criteria as people in the US are able to.

I would consider writing to your local MP. Is your own audiologist sympathetic at all? Have her write a letter to support your own explaining why she thinks you could benefit from a CI. I wrote to my MP once about something here in Australia and she did try and intervene and the situation that I was writing about was resolved.

Yeah thats right thats in new zealand's government. Yup, if New Zealand refuse to let me to have the CI then maybe I could try it in Australia. Im an australian so maybe i could be eligable to apply it.

Been there, they (MPs) are still worshipped to hearing house. When I applied it to hearing house and they denied me so I had another way to write to MP so I did wrote to the MP. They were happy to help me out and they've tried their best to fight for my case to get ci. Im still not giving up until I get one!

Next monday, I will be seeing audiologist and test me so I will prove it to them wrong!
Then next two weeks time seeing the ENT specialist to discuss why I want blahhh. Hopefully it won't be too long for me to get ci!

 

[R2D2]

Yeah thats right thats in new zealand's government. Yup, if New Zealand refuse to let me to have the CI then maybe I could try it in Australia. Im an australian so maybe i could be eligable to apply it.

Been there, they (MPs) are still worshipped to hearing house. When I applied it to hearing house and they denied me so I had another way to write to MP so I did wrote to the MP. They were happy to help me out and they've tried their best to fight for my case to get ci. Im still not giving up until I get one!

Next monday, I will be seeing audiologist and test me so I will prove it to them wrong!
Then next two weeks time seeing the ENT specialist to discuss why I want blahhh. Hopefully it won't be too long for me to get ci!

Sorry to hear you had no luck with the MP in New Zealand. There was a poster here called Raykat who was approved for a CI in New Zealand and she said that the waiting list was up to 5 years long for adults. So it sounds like a long wait anyway even if you get approval.

Good idea about possibly going to Australia. If you go to Australia, get private health insurance that covers hospital stay and you will be able to get the CI after waiting through the 12 months pre existing condition period. The government covers the cost of the actual implant, so there is nothing to fight with the insurance company about once you get approval from the surgeon, since insurance only covers hospital stay. Private health insurance is a bit expensive per month but on Medicare you'd be on a waiting list for possibly 3 years here in Australia, depending on which state you go to.

Next time I see my audie I will ask her about people in your situation.

 

[SpaceyUFO]

Been seen the audiologist lady and asked me if it was me who wants to have a cochlear implant. I said yes thats me I wanted one to have cochlear implant then she did test me without hearing aids on so she put the ear muff on to see if i can hear anything. I only can hear the noise which it shows that I have got 120dB in both my ears. But yes I am very deaf. She said I still have to see the Otorhinolaryngolgy *ENT* specialist doctor to test me to see if Im suitable or not! She explained to me that there are around 80 adults are on waiting list to have the cochlear implant! I said to myself, ugh she is trying to make me to feel put off about that one. I told her yes I am aware of this, I am not going to give up until I get one! Will see the doctor next monday. I know this is very start thats all I can do take one step but still takes me long way to go! Im also glad that it is happening before I go overseas next month for World Federation of the Deaf in Madrid, Spain.

 

[SpaceyUFO]

This morning I went to see ENT to discuss about me getting the CI and said that he thinks it is not useful for me to have it! He said he will referred me to visit in Greenlane Hospital. Sound promising.... He did ask me several questions about my background and using my sign language. I told him i use both!

 

[shel90]

Been seen the audiologist lady and asked me if it was me who wants to have a cochlear implant. I said yes thats me I wanted one to have cochlear implant then she did test me without hearing aids on so she put the ear muff on to see if i can hear anything. I only can hear the noise which it shows that I have got 120dB in both my ears. But yes I am very deaf. She said I still have to see the Otorhinolaryngolgy *ENT* specialist doctor to test me to see if Im suitable or not! She explained to me that there are around 80 adults are on waiting list to have the cochlear implant! I said to myself, ugh she is trying to make me to feel put off about that one. I told her yes I am aware of this, I am not going to give up until I get one! Will see the doctor next monday. I know this is very start thats all I can do take one step but still takes me long way to go! Im also glad that it is happening before I go overseas next month for World Federation of the Deaf in Madrid, Spain.

Your hearing loss is the exact same as mine and I have audiologists here in the US pushing me to get a CI cuz I qaulif y for them BIG time due to my oral upbringing and my strong background of phonetic/decoding skills despite being severely profoundly deaf. They told me that I am a very rare case of a big time deaf person who just "gets" it with speech and listening. I refuse to and it pissed the audis off...LOL! U should qualify!!!! Keep fighting for it! Good luck!

 

[R2D2]

This morning I went to see ENT to discuss about me getting the CI and said that he thinks it is not useful for me to have it! He said he will referred me to visit in Greenlane Hospital. Sound promising.... He did ask me several questions about my background and using my sign language. I told him i use both!

What will happen at Greenlane Hospital? They will assess you for candidacy?

 

[shel90]

What will happen at Greenlane Hospital? They will assess you for candidacy?

Good question...wonder what does sign language have to do with candidacy? I know here in the US, it is not an issue...unless I am wrong?

 

[R2D2]

Good question...wonder what does sign language have to do with candidacy? I know here in the US, it is not an issue...unless I am wrong?

It is an issue in New Zealand where SpaceyUFO lives. They have a socialized medical system and will only give CIs to adults who have acquired good speech skills, due to the fact that they work better on such people. So in NZ, they'd probably approve you, but not her.