2 year bilateral cochlear implant review

31 12 2013

So I’ve been bilateral for two years. Two amazing years.

Life has taken over and I’ve been so busy that I haven’t made much time for focused rehabilitation exercises. I asked for my Advanced Bionics processors’ programming to be adjusted to include Clearvoice High with threshold levels reduced to zero, to improve sound in background noise. I asked for T-coil so I can use this with an FM system, the Phonak Roger pen system which I’m really looking forward to using in meetings. The sound field audiometry testing produced threshold responses at 10-20 dBhl, so I have excellent access to the full range of speech frequency sounds at normal conversation levels (and I can hear my neighbours next door cleaning, tidying up, talking, and their TV!). My next review is in 2 years time. I’ve been instructed to replace my T-mics every 3-6 months and the headpiece every year. Below is a comparison of my hearing before I got my cochlear implants (in blue, without hearing aids) and my hearing as it is now, with 2 cochlear implants (in red).

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How have my speech perception skills changed over the last 2 years? I was tested with the sequential right-sided implant only, and I was really quite tired on the day so I probably could have done a bit better.

2013 review

  • CUNY lipreading test – 24 sentences of varying length and complexity presented in auditory and visual condition – lipreading with sound
  • BKB sentence test – 32 short sentences of simple syntactic structure presented in auditory alone condition
  • AB word test – 30 single words of one syllable presented in auditory alone condition and scored phonemically

I am continuing to make good progress with the second implant. The BKB sentence score when using both left and right implant is 87%, comparable to one year ago. I am very happy with both implants and prefer to wear them both at the same time. It is lovely though to have an “off” switch and relax at the weekends or after a long day.

I am still using realtime captions in meetings with my little mini iPad – it’s on 4G so I can get captions anywhere I go. I love it. (You can get this remote speech-to-text service from 121 Captions) I have tried some small meetings of up to about 4 people, and can manage without captions, but it is quite tiring – and the speed at which people talk!!!!!! OMGosh!!

My tinnitus is much better than it was before implantation, and it is quite different now. It has changed from musical hallucinations and a never-ending loud barrage of random sounds to a quiet motor hum, which gets louder when I am tired, and even disappears occasionally. With my cochlear implants on, I usually don’t notice the hum. I have purchased a travel sleep sound therapy system and pillow speakers from the British Tinnitus Association. The idea is that rather than putting up with loud tinnitus, I have a short nap with my cochlear implants on, and listen to soothing sounds to reduce the tinnitus. I’ll review this sound system soon. Here’s a useful  visual guide to tinnitus.

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I continue to be amazed by what I can now hear. I can tell when it is raining, when I am sitting at my desk with the window closed. No need to stick my hand out of the window any more. I can hear the photocopier running, two rooms along. I can use the phone, calling automated systems and listening to digital voices, but strangers speak so fast that they need to be asked to slow down. The phone is still a tricky one and a lot depends on my confidence rather than my ability to hear and understand. I can hear my pesky neighbours NO PROBLEM lol. I can hear the wind outside during the recent bad weather spells.  The waves on a beach are so loud, they still shock me. I can hear traffic a few streets away, so sitting in the garden is not as quiet as it would be for a hearing person, as I am so sensitive to sound. I can hear plants growing (just kidding on that one!). I could hear the change in my dog’s breathing when he became ill. I can hear food cooking and burning, which helps my cooking skills :)

I am still working out some sounds, I think I have pigeons or something weird on top of my chimney – no idea what that sound is! The heating system frightened me with loud thumps until I reset it (and figured out what it was, once I had calmed down). I enjoyed running the London Marathon with my iPod and listening to crystal clear music, and chatting to strangers in the cheering crowds. I’ve been to rock concerts and really enjoyed them. Everything is still quite overwhelming but the sharp edge has come off and 99% of sounds are now bearable. I still don’t like screaming babies….uggg. Interestingly, nothing is too loud, nothing hurts and makes me cringe from the volume like the hearing aids did. The loudest sound I have heard is a thunderstorm in Gibraltar, which scared the **** out of me and I hid under the table – just like my dad used to do. I have learned that you don’t actually have to *like* a sound, and you can love a sound too. My favourite sound is the rain, it’s like a sprinkling of musical tinkles.

I use the following resources for rehab, as well as unabridged audio books. My favourites are apps targeted at non-native English speakers, which I use on my iPad or laptop. These have British accents and have very clear speakers.

The overall effect of being able to hear well is being much more relaxed about communication and meeting strangers. I can lipread and listen, and communicate with strangers very well. I have attended events and found some people very difficult to lipread, and was forced to listen to them, and surprised myself by how much I can understand. The problem I have seems to be with distance from the speaker – the further away they get, the more difficult they are to hear. I am not permanently exhausted as I used to be, and I really value my mental and physical health.  My other half is a hearing person, he doesn’t care that I have cochlear implants at all – which is a double edged sword. He’s a surgeon so he is used to all this medical mucking around. Before you ask – no, he’s not a cochlear implant surgeon – damn, I missed out on a freebie upgrade in the future! He is only too happy to use text messaging instead of the phone, he doesn’t look at me when he’s talking, and he likes to whisper sweet nothings into my ear – and in Arabic as well! (ohhhhhhh the rehab! LOL) So I have some work ahead to improve my listening skills, to keep my auditory attention “on” and try not to lipread so much. Isn’t it difficult to stop a habit, when lipreading is like breathing? It’s good to keep the challenges coming and to keep trying.

Reach for the stars, and you just might catch one.

- FYI my neighbours have just started drilling holes somewhere in their house. The CIs come off NOW! ;)

Happy New Year everyone xx

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10 responses

31 12 2013
Nanna

Hi Tina. Good to hear from you. I am just rearing to find out what that Speech to Caption device/service cost. I have checked their website and not found anything related to cost. Would you enlighten me, please?

31 12 2013
Tina

Hi Nanna,
It’s lovely to hear from you. It is £65 an hour. I will send you an email. Hope you are well :)

31 12 2013
Nanna

Please send an email. I wondered how it would work if I simply needed it when having an important conversation with another person, but in-person. I was hoping that I could purchase a gizmo that would allow me to record speech and turn on a slightly delayed caption. Sort of like Google Translate ;-). But it’s a great thing and surely a step in the right direction. You may also use Skype if you wish… Hugs from here

31 12 2013
Tina

Email sent. All you need is Skype and an iPad!

31 12 2013
Dan Schwartz, Editor, The Hearing Blog

Tina, I’m very pleased to see you stressing auditory rehab, as although it’s often overlooked, it’s vitally important to success

31 12 2013
cem4881

Hi Tina, it’s good to hear of your progress. I haven’t done all the testing that you have and don’t really know what my scores would look like, but I don’t go much by that anyway. I am going to be very interested in what you find out with an FM system. Even with Naidas, I don’t think there is anything that works as well as an FM system. With one I am able to latch in on a speaker’s voice until I know it so well, that without the FM, my perception of his voice is hugely improved! I think I heard it described as a trainer long ago when I purchased my first one. The new FM reduced the stress of tutoring in a noisy room so much that I had the energy to do private tutoring and earned enough to pay for the system last semester. I had to purchase it out of pocket. As a lowly tutor I get no benefits. Not too sure if I will tutor at home again this semester because I am more interested in doing more rehab, not only for hearing, but limbering up my body. Have really stiffen up the last couple years being a couch potato! :D Good luck to you next year, and it looks like you will be ringing your bells in a few hours. Nanna, it was good seeing you here. Hoping all is well with you too!

31 12 2013
Tina

Hey Catherine! You make some *very* interesting comments. Now I’m even more excited at trying out the FM system. I will be certain to get in touch with you and feedback – we can swap notes! Wishing you a Happy New Year – we have 5 hours until lift-off! :)

5 02 2014
lyndasharp2

Had CI surgery three weeks ago and hanging about in the spooky silence prior to the big switch on. Explored online and found your blog/diagrams/tips the best ever to boost my flagging anticipations – many thanks Tina!

16 02 2014
Alex

How funny you mention the baby crying thing! A lot of people find baby cries are kinda shrill and they come off as unpleasant (I can’t stand crying babies). Yeah, that’s really normal :P just passing through on your blog! (If you want to hear something pretty try rain hitting wind chimes :PPP you might have already!!)

p.s. I think waves are loud too. where I used to live the water went over the rocks when it moved and the sound was the same like when there is “applause” from an audience. Good luck on your sound journey!!

16 02 2014
Tina

Thanks for the fab tips Alex! I will have to get wind chimes, haven’t tried them yet. I guess that means standing out in the rain to listen!

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