Thursday, June 3, 2010

Sound from the CI

Due to recent visitors who may not know about cochlear implants, I'll explain a bit about the sound:

As I was late-deafened, I 'remember' sound so I can compare how it is to normal hearing.

When it is first switched on, there is noise. As in my video, I was spoken to but all it sounded like was one high pitch, no understanding at all. I was expecting actual speech so that was a bit of a shock.

Coming out of the office after activation, when playing with my mobile phone, I could hear the clicking of the keypad! It was the everyday type noises that I recognised almost right away and I spent weeks revelling in all those little things that people take for granted, like the click of the light switch being turned on and off and the pffssshhhttt noise when opening soft drink.

It took about 2 weeks before I could understand speech without lipreading. I believe that is really fast, some CI recipients who are born deaf my never get to that point.

I could not live without my implant. It has helped me so much. Saying that, it is not like 'real' hearing. It can still sound a bit hollow and robotic. I am still hard-of-hearing because I don't understand everything. I find it very difficult to hear when there is a lot of background noise. I still prefer to have subtitles when I watch TV and movies.

I couldn't use the phone when I had hearing aids, I could not understand a thing. But now I can pick up the phone and talk to my loved ones and that is priceless :)

24 comments:

The Odd Crow said...

I just watched your video, first on Bing ninemsn, then clicked on the link and found your blog. I am so happy for you. I'm sure the joy you felt at hearing again was equal on the other side to the pain of losing your hearing. You are remarkable in how involved you are in the community and spreading the word. Although I am not deaf, I took 2 years of ASL (American Sign Language) in the States (I'm American :) and was involved a bit in the deaf community there. Good on ya for what you're doing and again, I'm so happy for you. Be prepared for instant fame, lol. I just wrote a column (I'm a column writer for a paper in Central Queensland) about how youtube.com makes people instant stars. I will be posting your video on my Facebook so others can see your remarkable story.

Giulia said...

Hello Nikki, My partner and I just watched your video. It was beautiful. What a lovely way to end our week. We wish you all the best. Hugs and smiles from Melbourne. Sean and Julia

Nikki said...

The Odd Crow : I'd be interested in reading your article, has it been published yet?!
Thank you for your kind thoughts!

Giulia : thank you very much :)

Anonymous said...

omg i cryed as much as you, I hope you have a full and happy life xxx

Anonymous said...

Hi Nikki,

I've come across your blog via ninemsn, and I've just spent the last 1hr reading through your journey. I felt your story was very warming and emotional. I'm 18 years old and began losing my hearing at 8 years old. Over 10 years I've had 6 operations to try reconstruct then bones in the middle ear. I have worn hearing aids for about 3 years, and at first it was really good. But slowly my hearing has detiorated over the years and recently I had an operation to try fix the hearing. My specialist said there was an 80% chance it would improve my hearing and a 20% chance it would stay the same. but what they didnt tell me is i could lose my hearing. so after the operation (horrible experience) i have now lost almost all hearing in my right ear(my best ear) and cant even use my hearing aid in that ear.

Some days i get really down knowing that i might never be able to hear. and i guess i do take what i can hear for granted.

So by reading your story, you have given me hope that i might not be stuck struggling to hear and do little things ppl take for granted. If you have a good ENT specalist, can you please let me know as i'm also in Perth.

I hope you are doing well and congrats on the marriage.

thanks so much for an inspiration story.

Nikki said...

Dear Anon: My specialist is Dr Stuart Miller, but he's not the only one who does CI operations in Perth :)

If you have private health insurance, it is not a long wait to get one! They do a lot of tests first, to make sure you are a candidate for it.

Your GP can give you a referral :) Late deafened people with high hearing aid use usually find the CI most beneficial.

Good luck!!!!

Denise said...

Hi Nikki

I first came across your video whilst doing CI research but had no idea you were a Perth based till I saw the Nine MSN article.

I'm bilingually deaf with profound hearing loss in high frequency ranges. I'm really not sure when my hearing loss first started but I found out when I was 24.

I spent seven years going through various combination of hearing aids and listening devices as my hearing loss progressed (quite rapidly in the last couple) until last year when I got my implants. I had my first in May and the second in December and it has had the most tremendous impact on my life - it really is the little things that others take for granted that still continue to amaze!

I've got MedEl Duet processors which are a hybrid of a CI and a hearing aid - my hearing loss is not as sever in the low frequencies so the hearing aid component makes the sound quality more natural. Because I had to re-learn to hear, they start your rehab with just the CI, so I know exactly what you mean about people sounding like chipmunks! I also described it as sounding like the song Intergalatic, if you know the one? Here's the link http://www.youtube.com/watch?v=NyDaI0qzywQ

Thank you for sharing your experience. I think hearing loss affects far more individuals than most people realize.

I wish you all the best in the future.

Denise

Anonymous said...

Just saw your video on ninemsn, and then read a couple blog posts. It's great to hear you progressing very well and that it has been a success. :) Very much appreciate your will to continue living like a normal person.

And to Anon above: don't give up!

Lissa said...

Hi Nikki, just watched your video on YouTube, it was incredible and brought tears to my eyes. I wish you all the best for the future.

Teena said...

I just stopped by because of your story in the news, its great :) I'm a blogger too, why not pop up a follower thingy so we can follow you? All the best <3

Anonymous said...

Absolutely fantastic. I'm happy for you and hope it all works out great!

Nikki said...
This comment has been removed by the author.
Nikki said...

Denise : I didn't realise the MedEl had a hearing aid component, that is great! That is still why I wear my other hearing aid, to make the sound more natural :)

Teena : I have allowed the blog to use RSS feeds, I'm not sure what a follower thing is?

Thank you everyone for your kind wishes :)

Denise said...

Hi Nikki

I believe Cochlear have also come up with a hybrid. The technology advances so quickly! Not sure what sort of features the Cochlear one has so I can't make a comparison.

As for the MedEl, there are pros and cons with any product - the pros are that it has functionality for plugging into an iPod/iPhone (which is really cool), you can adjust the settings for volume, t-coil etc with a 'remote control' (CI component only) and the quality of the sound is really close to what I remember, especially with music. The cons are that it is currently not compatible with the rechargeable battery packs (I chew through batteries!), the hearing aid component is manually adjusted so it's quite fiddly when mapping because to get the two types of sound to 'balance'. But overall, I think the pros well outweigh the cons.

Quick Q for you Nikki, do you have any advise on CI insurance? My processors are currently insured under home and contents, however it is a nightmare to get sufficient cover for travel. There's only one place I have found that costs under a grand.

Thanks in advance,
Denise

hugh s said...

Reddit has caught on! I'm happy for you! Please come say hi :D

http://www.reddit.com/r/reddit.com/comments/cc0ak/girl_hearing_for_the_first_time_in_10_years_this/

El Gonzi said...

I've just watched your video and I felt very happy for you. It was a very special and touchy moment indeed.

I hope you get used to the implant and I hope technology improves even more.

My best wishes to you!

El Gonzi

nttran said...

Hello Nikki, I just stumbled across your video on youtube and wanted to say thanks for posting and sharing. As an audiology student, it is always nice to hear a success story from a CI. And hooray for the success! :)

Moose said...

Quite the touching video.

Best of luck!

HearingAidEngineer said...

Like your video on Youtube.

For noisy situations there are wireless microphones you can connect with you speech processor using an FM receiver. With such a microphone device you can using a standard bluetooth mobile phone. You can also connect your MP3 player or tv or every other device with an audio output to it.

Don't want to advertise a product, but this is an example:
http://www.phonak.com/com/b2c/en/products/fm/transmitters/smartlink_plus/overview.html

a co-worker using a CI uses the same device.

Riot Nrrrd™ said...

Hi Nikki,

I watched the video and was very touched. I think it's gone viral because everyone loves a feel-good story and, let's face it, we don't get to see miracles happen every day!

BTW, I have "normal hearing" but excessive exposure to loud music over the years (yeah, I'm blaming that) has left me in a similar state to you as far as background noise is concerned - if I am in a loud restaurant or a club I literally have a lot of problems hearing the person I am talking to, even if they are less than a meter away from me. So don't feel so bad about that, it afflicts us 'normals' as well!

I hope in the future the tech will make it less 'robotic' sounding for you. How thrilling to get that sensation back though! Very happy for you :)

Benjamin said...

Hi Nikki,

I'm a medical student that came across your video while doing some reading about cochlear implants. Your reaction when the implant was activated was both moving and heart warming.

How incredible is it that implant can restore a persons hearing? I can't imagine the joy you must have felt to receive such a gift.

Thanks for posting the video.

Pennywhistle Productions said...

Thanks for the insight into what it's like to have a cochlear implant. Very interesting! I'm so glad you can hear again.

Kalpesh said...

Hi Nikki, I know it was really beautiful moment for you and since you have shared it online.. now many people have become aware of such high tech facility for hearing. And nice post.. u said it so aptly.. reading about your hearing experiences, different sounds was really great. I came across your video while watching 8 month old baby's Cochlear implant video. You might have seen this but sharing it here: http://www.youtube.com/watch?v=HTzTt1VnHRM&feature=share .I wish you best of luck in your future adventures and enjoy life to the fullest :)

Anonymous said...

Congrats Nikki.
this is truly amazing - vinnie