So, I am thinking this might be my last ever post on this blog.
I have reached the point where there is not really much new stuff to report.
I know it has only been 7 months since I got the implant (7 months! is that all???! Can you believe it?) But already, I think I have reached the peak, and plateaued. The implant will not get any better or different now in my right ear. It has reached its’ ‘zenith’.
And what a zenith that is.
I can hear on the phone now. Very well.
It's goodbye TTY, hello normal phone since I had the implant. However, I keep the TTY on my desk just in case! Can't shake the feeling of needing it there.
So well in fact, that I have had a normal phone installed on my desk at work alongside my trusty TTY phone that I always used when totally deaf.
So, as you can see – the cochlear implant actually did what I dreamt it would do – it allowed me to reconnect with the world on the phone again.
I can also hear a lot better in group conversations and meetings. Where I used to strain to hear someone at the other end of a meeting table, now I can sit back and hear almost every word. That never ceases to amaze me.
The things I still can’t do all that well are:
- hearing lyrics to music (I can hear them better than I could with the hearing aids, but they are still a bit unclear at times)
- watching movies and TV – I still need captions if I am going to really relax and enjoy movies and TV – however, I have been to see Avatar and
I still need to watch TV with captions. Which is why it's so frustrating when they don't have them!
District 9 without captions, and understood most of it. I can also understand most TV news without captions.
- I still tend to lip-read in noisy environments, but I can hear people a lot better in noise.
So, if I am going to leave anyone with a word of advice, or perhaps a message to the deaf community, or maybe parents considering an implant – having been through this all before, having met so many people who’ve had implants, having talked to ENT surgeons, doctors, audiologists and researched online – it would be this:
Kate’s Final View on Cochlear Implants
Disclaimer, this is only my view, no one elses. You might think it’s completely wrong, yo! If you do, then leave a comment, but make sure its a clever, well-thought out comment. I’ll delete stoopid ones!
- A cochlear implant is not a cure for deafness. It is just like a hearing aid, except it is implanted in your head.
- It does work wonders for some people, and not so well for others, just like hearing aids. To find out whether you are a good candidate, you need to see your cochlear implant specialist. A normal audiologist just won’t cut it – they just don’t know the real facts and figures.
- It appears that people who go deaf later in life are probably going to benefit most. I was one of those, losing hearing over ages 11-19 years.
- It appears that people who are deaf since birth, and get the implant after 5 years old seem to find it harder to adjust – maybe because of crucial years of language development have passed? Not sure.
- From what I have seen, deaf people who get an implant before the age of 5 years old seem to find their cochlear implant more useful.
- Even with an implant, you will always be deaf, and something like 20 per cent of the time you will not be using it (i.e. swimming, shower, in bed, when playing messy sports), so it pays to learn sign language and lip-reading to use with your family and friends.
I am glad I got the implant. I am also glad I waited because it was an emotional ride. But I would do it all again, definitely. If I had a deaf child tomorrow, I would give it a cochlear implant before the age of 4, teach it sign language and show it how to lip-read.
There, getting off my soap-box now.
Here are my final test results for the 6 month test at the Sydney Cochlear Implant Centre – please note the disclaimer my audi asked that I include on my hearing aid result!
These are the test results for my Phonak hearing aid in my right ear: Note: These hearing aids use “Input Compression” or “AGCI” (Automatic Gain Control for inputs). This feature means that the hearing aids vary the amount of amplification according to the loudness of incoming sounds. Soft sounds are amplified more, while loud sounds are amplified less. The complexityof the aids means that they amplify warble sounds used in aided threshold testing differently to running spech. For this reason, aided thresholds measuired with a non-linear aid can only give a general impression about what is audible for complex sounds such as running speech.
This is the test result for my Freedom Cochlear Implant, in my left ear.
My final speech recognition tests were:
Sentences
- 100 per cent for both hearing aid and cochlear implant together
- 100 per cent for just the cochlear implant
- 66 per cent for just my old hearing aid
Words
- 84 per cent for just the cochlear implant (I was zero per cent when I used my hearing aid)
- 20 per cent for just my hearing aid
So, I as you can imagine, I am contemplating getting a second cochlear implant.
But I am going to hold off for a few years, only because the hearing aid balances out the sound of the cochlear implant, and makes everything sound ‘normal’.
So I guess you could say ‘watch this space’ – I may come back with a new blog:
“Kate’s Second And Hopefully Final Cochlear Implant”!
Who knows!
Until then, bye, and thanks for reading!
Kate Locke, signing off! That's it from me - have a great 2010!
February 20, 2010 at 4:37 am
What was your db before implant without the aid of hearing aid? I’m sure you’ll find more things to write about if not frequently. You might find additional technologies that works with your implant in the future or maybe share some interesting data like you are right now.
February 20, 2010 at 5:10 am
7 months and you think you’ve peaked?!
I’m still finding new things to talk about after having my CI for 8+ years. And I’m one of those guys who was talking on the phone 3 days after getting activated.
Have you had days yet where you notice your hearing may have actually declined?
Have you had times where things are so clear that you can hardly believe you wear a CI?
I’m trying out new stuff with the ears all the time. Music concerts. Dance competitions. Live sports games. Bar hopping. Road trips with nothing but music to keep me occupied. Listening to the radio.
I hope that you continue to have hearing adventures!
February 20, 2010 at 7:36 am
Kate
thanx for your terrific blog. While I can understand “Thats enough for now” I hope you’ll keep up your advocacy for thecdeaf community. It is people like you who have inspired me to take up the struggle for captions and facilities.
I had my second implant on Wednesday. I couldn’t not have had it.
I saw your letter in the SMH today. Keep up the great work please.
THX JC
February 21, 2010 at 1:41 pm
For those of us in the United States following along, what is the SMH?
February 22, 2010 at 12:06 am
SMH is the Sydney Morning Herald a Newspaper in NSW Australia.
http://www.smh.com.au
February 22, 2010 at 8:30 am
My letter to the editor got published in one of Sydney’s major newspapers. It was about captioning. I dont have a link to it, but you can read the letter I sent them here:
————————————————————————-
For many years, all the major TV stations in Australia have argued that providing 100%, 24 hour captioning for deaf and hearing impaired viewers is too expensive. So, anyone with a hearing loss is left out of watching the television that everyone else had access to. Senator Conroy’s $250 million licence fee reductions “gift” for Channels Seven, Nine and Ten has now provided each of the stations with ample funds. They can’t argue unjustifiable hardship to the numerous complaints that come to the Human Rights Commission every day from deaf and hearing impaired people across Australia just wanting to be able to watch TV like everyone else.
————————————————————————-
February 20, 2010 at 10:06 pm
Such a brilliant blog. It’s been inspiring to read such a well written success story.
I’ll miss your updates.
All the best,
Bryonyx
February 21, 2010 at 9:41 pm
Hi Kate,
Just wanted to say that yours was the first CI blog I found and it has really helped me with my own journey. It inspired me to write my own blog as friends and family wanted to keep up to date with my progress without pestering me.
It has been picked up by the BBC in the UK and they are now featuring my story on their See Hear programme in march!! Hopefully I too can now help others and give people hope of a hearing future.
Best wishes,
Graham.
February 22, 2010 at 11:11 pm
Hi Kate
Thank you for sharing your story, I found your blog a few weeks and read it from start to finish in one go. I get my 1st CI in a couple of days. You really helped with your posts, now I have a better idea of what to expect over the next few months.
February 26, 2010 at 4:20 am
Hi Kate,
Consider waiting until you lose all the hearing in your other ear before you consider a second implant, as even some hearing at 250 and 500 Hz can make a world of difference in terms of the quality of the sound percieved. 20% word recognition is very good, considering many people have 0% and still obtain significant benefits from the additional acoustic stimulation, that you can’t get with a second CI at present.
March 26, 2010 at 9:59 am
Thanks, my husband wore aids, then lost all hearing. He had an implant in both ears 2 weeks ago. I hope this works for him….
March 26, 2010 at 4:05 pm
Well done, Kate, for your honest sharing. I’ve had a hearing loss from birth and wear hearing aids for now – which suit me fine, but who knows in the future??
March 29, 2010 at 9:27 pm
Sorry to see you leaving your blog, Is great to see it has worked for you as I am still waiting to have my implant fitted and your story has been encouraging. Happy Hearing
April 10, 2010 at 6:30 am
Kate
Your Blog is absolutly incredible and inspiring. It was just what I needed and exactly what I was looking for. My husband just turned 29 and has been loosing his hearing over this past year and a half. The doctors are unsure as to why this has happened. When he came to me with the option of the Cochlear Implants I was terrified of all the risks that were involved. We are in a community building business and it has been hard on him and almost impossible for him to comunicate with anyone especially our children and family members who don’t see him often. I can see how you felt like you may need to rely on your family forever because without help I don’t know how he could get by with his day to day life. I wanted to thank you for letting us into your life a little bit and for giving us all hope. you are an inspiration and I am so thankful to have found your blog.
Thanks again!
April 10, 2010 at 6:38 am
wow Holly, this is the best sort of comment to get on my blog. Thanks for reading – I hope your husband works out a solution that will suit him and make life a bit easier! I hope the cochlear implant is the answer, and that it works for him! Fingers crossed.
Cheers,
kate
May 16, 2010 at 7:52 am
Kate,
First off, congratulations on getting married!
————————
I’m actually a bit disappointed your CI blog is following the typical “story arc” by fading into oblivion, as so many seem to do after the first year or so as the excitement of hearing again wears off.
For me, the highlight of your blog was your 1st stim turning into a media circus spread out over two rooms, complete with a preening politician — Several CI audies here in America got quite a kick out of it, too.
The reason for my disappointment is that, unlike many other CI blogs, yours is better written than most any other; and I included it my list of 6 blogs any person considering a CI should read, out of the many hundreds out there.
One of the very people you helped is Graham Moxon in Bristol, England, who posted comment #5 above. Yours was the first CI blog he read; and as a followup he just had his implant surgery yesterday — Complete with a BBC documentary film crew following along.
Another reason I’m a bit disappointed is that by keeping this blog alive, it will build on your award-winning advocacy, helping many other less-gifted people have an advocate through your writing and storytelling talents, and your (previous) passion.
I speak for many when we all hope you reconsider your decision to make this your final blog entry.
Yours truly,
Dan Schwartz
TheHearingBlog.Com (coming soon)
Cherry Hill, New Jersey USA
August 27, 2010 at 12:29 am
Kate,
Thanks so much. I’ve been “losing it” since diagnosed with Meniere’s syndrome 10 years ago at 40. Btw, I understand there’s quite a lot of Meniere’s in Austratlia. In some ways, I feel very blessed to have had hearing in my 20′s and 30′s – even fronting a rock and roll band through my 20s – and equally sympathetic for your having to go through your 20′s without it. That truly sucks. Anyway, things have progressed, and I’m getting a right ear implant at Johns Hopkins on Sept. 29th. Your blog has been a big help leading up to that day. Congrats on the marriage!
Thanks again.
Joe Connor
Ellicott City, Md USA
September 15, 2010 at 8:12 pm
Kate
thankyou so much for your blog. As the mother of a baby boy born profoundly deaf almost 18 months ago, I couldn’t ask him the questions I wanted to. Your blog helped me understand how things might be for him. Yes we had all the technical info, but not the day to day reality of living with a CI. That’s what came out so clearly in your blog. A year on from his switch on of bilateral cochlear implants and we have never looked back. He is talking up a storm and there’s no stopping him. We can’t wait until he can explain his hearing world to us.
Thankyou so much for your story.
Jo Williams
Wollongong, Australia
September 29, 2010 at 3:46 am
I really enjoyed reading your blog. It is nice to see what others go through and how they feel about their implant. My daughter had gotten a ride side cochlear implant when she was 2 and she is now turning 6. I started my own blog about her and what we have been through but I am new at this blogging so it should be interesting lol.
December 6, 2010 at 1:11 pm
Regarding Joe Connor’s Meniere’s. I have had bilateral Meniere’s from the age of seven. At age 61 I had lost all hearing in one ear, and nearly all in the other. I had a CI three years ago (in the worst ear) and nearly all of the Meniere’s symptoms disappeared. I have been told that this can happen when Meniere’s patients have a CI. Incidentally, I am very happy with my CI.
December 15, 2010 at 6:16 am
Byron,
Thanks very much for your follow-up. My experience is the same. My implant was done on 10/5/10 and activated 11/3. It ain’t a new ear, but it’s a huge difference, and an incredibly positive thing both personally and professionally. Yeah, music still sounds pretty mushy, but I can talk to family in quiet rooms. And colleagues no longer avoid me (if they did, which I would understand). Someone recently suggested to me that deafness is more isolating than blindness. Of course, Ive only experienced one of them, but to have that wall lifted from between me and the person in front of me is just huge new lease on life. I wish you many years of continued enjoyment of your new loud world!
Joe
December 17, 2010 at 10:03 am
I just came across your blog today. I got my first implant done 4 days ago. Feeling sore and still puffy but it is so good to read about other peoples experiences. Everyone does things differently (I was total I could take the bandages off the next day and shower the day after. I’m realistic about results, been deaf in the right ear since 2 and losing hearing in the left so wear a hearing aid there. Thanks for your great blog though.
February 11, 2011 at 3:22 am
I just got turned on 3 days ago and I am SO GLAD I found your blog, all these noises are certainly driving me crazy hahaha but its SO nice to know that this is all “normal”. Thanks so much for everything you have posted, you have given me so much hope for my implant and have eased my mind about this! I can’t wait for these electronic sounds to be “normal” Your description of the noise and sounds are so much like mine. Thank you, thank you, thank you!
April 1, 2011 at 10:10 pm
Great blog, have been searching for a real persons view for a while. I consider myself to be a severe tinnitus sufferer, can’t use phones etc. Tried all sorts of hearing aids that seem to only amplify what I can already hear( low pitches). My tinitus( various higher pitches) seems to override or cover what I’m suppose to be hearing. Anyway is there any good info that anyone knows to do with tinnitus/cochlear results?
Would love to hear what other people hear.
April 8, 2011 at 10:05 pm
JCraig-You could ask my Doctor, he is a tinitus and cochlear specialist, his name is Dr. Levine and you can just google him. He works from the University of Minnesota. I would think getting the implant would solve your issue, but really I’m not sure. Good luck to you!
A quick update on my implant-I am doing GREAT, I can use the phone now and am going to get my left ear implanted in June. I can’t wait! It truely is a miracle for me!
May 22, 2011 at 5:07 am
Kate, I don’t know if you ever dive in here these days but I must say that your very well written blog is the most informative I have found on the web. I am scheduled for an implant in Oxford, England in September and your description is most helpful.
Please do let the site get removed as the information here and those posts by others is timeless.
Thanks and best wishes.
Ian
July 2, 2011 at 9:40 am
Kate,
I’ve been searching the internet for information on the cochlear implant. Thank you for your blog, it’s very helpful to see how people are doing with the implants. That’s the one thing that is lacking is information on how patients are doing post op. My husband was a musician in his youth. And has profound loss in one ear and severe in the other. Guess the loud shows finally caught up with him. Anyway, now his children sing professionally and he is having a hard time hearing them sing. It truely breaks my heart when I see him struggle to hear his children but can’t make out the works. Do you feel the music quality is getting better for you?
July 6, 2011 at 9:54 am
Hi Kim,
Music has changed, and is still not as amazing as it was when I had normal hearing – however, it’s lots better than before I had the implant. The biggest improvement is hearing lyrics and singing. Beats still sound great, but classical music still sucks, as does heavy metal. but I hated those before the implant anyway… Most pop music sounds great, but I often have a bit of difficulty picking out the tune… So, music is still not 100 per cent great, but it’s worth it for hearing the lyrics and speech.
Cheers,
kate
November 4, 2011 at 2:35 am
Hey Kate
I’ve just spent the entire afternoon reading your blog at work, which is definitely much more exciting than reading global property reports. I’m sure you hear the usual ‘you are an inspiration, absolutely amazing’ from people but I just wanted to say, thanks for keeping the blog real with your sense of humour, the good, the bad and the ugly about CI.
I got implanted 3 years ago as a 21 year old and it has improved the quality of my life to a great extent. I still regard myself as ‘Deaf and proud’ and occasionally have discussions with my Deaf friends about CI. As you know the politics of CI, I have always said that if I had a Deaf child, I will always implant them so that they can have easy access to the ‘normal’ world because let’s face it, the Deaf community will shrink as Doctors recommend CIs to every Deaf child. Just the way it is but of course, try and teach them sign language. Being bilingual will mean smart children, ha!
Now it is your 3rd year, you probably have come a long way since the switch-on. All the best for the future.
Amanprit x
p.s. Graeme Clark rocks! Won his scholarship to do a Masters. Without that and the implant, I wouldn’t be where I am today.
November 19, 2011 at 7:40 pm
Dear Kate,
What a ride! I loved being associated with every minute of it and I wish that your words will mentor someone else on a similar path. Wishing you the very best for now and the future! Monica
December 6, 2011 at 9:41 am
I just stumbled upon your blog and look forward to reading it from the beginning. I have been hard of hearing since Birth, wore hearing aides for over a decade, quit and have gone back to them. Now with the birth of my son, I too am considering getting a cochlear in my worse ear to see if it helps! I am a registered nurse, but having my son and wanting to hear every sound he makes is my motivation- do you have any advice for me? Would love to hear it- am so glad you are so happy with yours!
March 29, 2012 at 8:54 pm
Dear Kate,
I was totally impressed by your blog. I am a victim of a bomb blast in Sri Lanka and lost my hearing 100 % in might left ear and 96% in my right ear, but as of last week I began to lose my hearing in the right ear and today I cannot hear at all in my right ear. I cannot even hear my own voice. The doctor recommended a cochlear implant. I am worried it might not work. Please let me know what you think. If it is possible can i have your email address so that I can send you my email address.
Thanks and kind regards,
debbie
June 5, 2012 at 11:06 am
Just got an implant 3 weeks ago and have been looking for blogs. I started one called Hello Vincent. I’m scheduled for activation this Monday. I’m pretty nervous but since I teach will have the summer to adjust before going back to the classroom.
http://hellovincent.wordpress.com/
June 8, 2012 at 1:02 pm
Dear Kate,
I am sad to say I found your blog too late! I hope you will consider blogging more as your journey continues…
Ever since I worked at an early intervention school that had a cochlear implant program, I have been really interested in the community and culture/s that surround cochlear implants. I am now doing a research study that seeks information from cochlear implant recipients on variables that have contributed to or hindered success. The body of research literature on such qualitative information is slim to none and I would like to change this! Can you suggest some blogs or websites where I may be able to post a link to the survey? I would tremendously appreciate any help you can give me!
Thank you!
Amanda
November 21, 2012 at 3:56 pm
Medel has a new online community for CI recipients and prospective recipients. That might be a good place to start
July 30, 2012 at 10:21 am
Kate
I hope I will be as successful as you. It’s been over two months now but I’m already so happy to be able to talk to people more on the phone. I still need captions for my brother but it’s way bettert than before. I went to a movie last night and couldn’t understand the speech, esp since it was British but I still picked up some stuff.
November 12, 2012 at 4:01 am
You said that you could hear and lost your hearing after the age of ten so i would like to know if you can compare the sound before and the sound from th CI… would like to know if the sound from a CI is the same with the sound that a hearing person hears?..and if not how different is it?…If someone knows and could inform me i would be thankful..
November 18, 2012 at 3:05 am
Dear Kate,
Thank you for sharing this blog and keeping up to date. I looked all over the internet looking for something like this. I am 15 I have profound hearing loss and I am considering getting a CI it’s very scary. The thing I was most worried about was music, but you said it’s a lot better so I’m looking forward to that! I hope CI continues to be a success for you. I have a couple questions though, I heard that with a HA you hear through the ear, but a CI hears through the like top of your head?
I was confused. I don’t want one but I really need one..
It’s a tough desicion, but thanks so much for this!
November 20, 2012 at 7:33 am
HI TiaAlicia,
A cochlear implant was the best decision I made in my life. I can hear on the phone now. I still wear my hearing aid in one ear, but the cochlear implant is implanted into the other ear. It looks like just a hearing aid on the outside. The surgery to get it only takes 1.5 hours, and a week to recover…
You should just go and talk to someone about it to find out more, it sound like you have heard incorrect things from people. A cochlear implant does not go in from the top of your head, it is inside your ear – the surgeon goes in behind the ear. So you can’t see anything when you take off the “hearing aid” bit of the cochlear implant. Its all hidden.
Like I said, please go and find a good audiologist to speak to about all the things involved, and make a decision from there.
Good luck!
Cheers,
Kate
November 21, 2012 at 10:31 am
Hi Alicia,
I was just implanted nov. 8th. I went with the probionic Neptune (a water proof CI).
While I have not had my implant turned on yet (nov 26th can’t come fast enough!) I wanted to tell you that my specific implant has nothing attached to the ear. They made an incision behind my ear and implanted the internal component about an inch behind/above my ear. I will then wear the external part attached directly to that by magnet and the processor will be clipped up in my hair or to the collar of my shirt. So the description of hearing through the top of your head, while misleading is sort of accurate! There are many different brands and options to choose from! I encourage you to meet with a cochlear implant specialist! Good luck I’m your journey to hear more!