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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Update on NICE guidance for cochlear implants in UK

24 05 2011

NICE reviewed the guidance for cochlear implants (TA166) very recently and you can read the outcome after the jump. To paraphrase;

Review of TA166; Cochlear implants for severe to profound deafness in children and adults

The planned date for review of the above guidance was February 2011.

This is the date at which the Institute decides whether sufficient new evidence has emerged for the Appraisal Committee to be asked to undertake a full review appraisal.

Having re-run the search strategy from the original assessment report the Institute has not found any relevant additions to the evidence base that would have a material effect on the guidance. The newly identified evidence is not likely to change the current guidance. Consequently, we propose that the original guidance should be transferred to the static list.

Topics on the static list may be transferred back to the active list for further consideration if new evidence becomes available that is likely to have a material effect on the last guidance issued.

In order to be completely confident that this is appropriate, we are asking all relevant consultees and commentators, to inform us of any evidence which would suggest that a review would be beneficial.  Please see appendix A for a full list of the organisations we have contacted.

Appendix A: Provisional matrix of stakeholders

Appendix B: Proposal paper presented to the Institute’s Guidance Executive

All the information from the review is in the links above. I was disappointed to note they are not going to review the BKB test either.





Bouncing into a hearing life

16 04 2011

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It was time for my one year annual review of my cochlear implant.  I was so excited. I was so hungry for improvements in my hearing. I have been so delighted every time I heard a new sound, understood it, and passed another milestone. It had been 9 months since my last assessment, and I was hoping to come out with good results this time.

I saw my speech therapist and we talked about my new hearing in general. She took me to the soundproof booth and tested my hearing.  Mid-way through testing, I had to ask her to shut both doors to the soundproof booth (there are two in one doorway) as I could hear people talking. It turned out that my hearing had, yet again, improved overall, with a dip at the high frequency end. The blue line shows my current hearing level compared to my hearing before I received my cochlear implant.

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Then we carried out some speech perception tests;

1. City University of New York (CUNY) sentences which is a list of simple sentences such as ‘The dog bit the postman’. Guessing from context and rhythm, or top-down processing, means I can gain more marks. The first time I took this test, a year ago, I scored 40%. I took it again 3 months after activation, and scored 48%.

2. A much harder test, the monosyllabic consonant-nucleus-consonant (CNC) test which is a list of single words. There is no context so I can’t guess, although marks are given for getting bits of words right. My score on this test, after activation, was 33%.

I had to sit at a measured distance in front of a speaker and listen to a recorded voice at 70 dB. This time, I’d had 3 hours sleep the night before, I was numb with tiredness, and I was totally thrown by how loud and deep the speaker’s voice was. BOOM-BOOM-BOOM. Whoa. I almost fell off my chair.

This time, I was hugely disappointed to score 40% on listening to sentences and 33% on listening to phonemes, although I scored 98% on lipreading with sound. I had put sooo much rehabilitation work in over the past year and I felt so deflated. I felt as if I had gone back to square one. This cochlear implant thing sure is hard work.

I then met with my audiologist to have an adjustment made to my cochlear implant settings (often called a ‘mapping’).

Each electrode was tested for comfort. I heard tones ranging from very low to very high. The audiologist increased the volume of each tone (electrode) until I was comfortable with the level of loudness for each one.

Listen up ladies and gentlemen! The operative word here, the key word, is COMFORTABLE.

Not … ‘As loud as you can stand it’.

Not … ‘As loud as you would like it to be’.

Not … ‘Louder is better, just like the hearing aid’.

It turned out that my cochlear implant had been too loud – for a year! Waaay too loud. She gave me a new setting with the volume turned way down, and another setting with the volume a little louder, just in case I found the quietest setting too quiet. This makes me wonder about the efficacy of cochlear implant adjustments / mappings. I would like to see NRI (Neural Response Imaging) used more, or a better way of testing comfort and maximum threshold levels. I find it very difficult to tell the difference between loud and louder.

Myles de Bastion wrote an excellent essay explaining the problems with Bamford-Kowal-Bench testing for cochlear implant candidacy.

The balance of the frequencies on my cochlear implant was also adjusted, so the lower frequencies are now boosted and the higher frequencies are now lowered quite a lot. I can happily listen to crinkly plastic bags and screaming children now. My audie used the Harmony listening check to test my T-mic (microphone) to ensure it was fully functioning and enabling me to hear as well as I could. That got the all-clear.

Onto my rehabilitation ….

I’ve been pushing the auditory verbal therapy as I feel this is the golden key that will unlock my mind to understanding what I’m hearing. I had popped in to see my audie for an adjustment a few weeks ago, and after that, I was able to tell the difference between the Ling sounds OO and EE. The Ling 6 sounds are the sounds that lie within the speech spectrum of hearing, and they are M, OO, AH, EE, SH, S. I had persuaded my speech therapist to give me some free auditory verbal therapy and a week after my annual review, she gave me an AVT session (this is my second AVT session) and tested me on my listening skills, reading 3 passages from ‘The Emperor’s New Clothes’. I scored 82.5%, 83%, and 85%. HOWZAT! Much, much better than in the soundproof booth with that godawful speaker!

*Twirl*

I’m happy with my new volume setting. I’ve been cringing so much lately that my shoulders are around my ears and I’ve been ratty with the over stimulation or ‘sound hangover’, snapping at people when they clatter cutlery, unpack a bag, or just generally make too much noise for my liking. Nothing makes me cringe any more. I’m now listening to talking books every chance I get – at work (tee hee), when shopping, walking the dog – not just on my commute. I figure that if I push the speech just like I did with the music, it will drive the momentum forward and get me there quicker. My interpreter is reading to me daily from a children’s book, Billionaire Boy by David Walliams – it’s quite funny and a challenging listen, as I can’t guess as much as I would with a conventional story….

‘The carpets were made from mink fur, he and his dad drank orange squash from priceless antique medieval goblets, and for a while they had a butler called Otis who was also an orang-utan.’

I’ve also lined up more from David Walliams, The Boy in the Dress and Mr Stink, and more of Harry Potter has gone onto my poor iPod, which is working over time. Jacqueline, my auditory verbal therapist, recommended a book, Bounce by Matthew Syed, a three-time Commonwealth table-tennis champion. The book explains the rationale behind success, how the key to achieving greatness lies in hard work, the right attitude, and training. This book is now on my reading list.

I’m also taking part in a clinical study at my hospital, which is looking at factors affecting audio-perception with cochlear implants. The purpose of this study is to determine if cochlear implant sound processors can be adapted to improve speech perception. The team will make changes to my programme that are intended to improve pitch discrimination based on my discrimination ability and evaluate this with speech perception. I went in to do the first round of tests yesterday. They hooked me up to their computer and asked me to carry out a pitch discrimination task, listening to pairs of sounds – the same sounds used in mapping. I had to say which sound was higher in pitch. Each sound is a separate electrode on my implant being stimulated and this was done for all the electrodes, to work out which ones give the clearest pitch and if there are electrodes which sound the same. Then I was asked to do the same task again, but this time with volume, guessing which sounds are louder, softer, or the same. These tests were incredibly difficult. I scored 100% in some areas, and fairly badly in others. So the team have now set a baseline  of my discrimination ability to work from, and will be able to evaluate how much benefit my auditory verbal therapy will give me. In July I will return for another set of tests and will be given a program on my processor to try out. So I’m really trying to push the boundaries of my brain’s ability to hear, to make this cochlear implant as successful as it can be for me.

And … now for the best news of all. I’ve  been given all my birthday presents at once. My cochlear implant team informed me that I’ve been approved to go bilateral. As the HiRes 90k implant is now back in production and available in the UK, I’m in the queue and hope to get my second bionic ear this summer. Two ears, even if one is very new and not performing as well as the older implant, will give me better hearing overall due to the concept of synergy. So I will benefit from two ears fairly quickly, I won’t have to wait for a year or so to benefit from the newer one.  With two good ears, I will be able to detect direction of sound, hear in noise, eliminate the head shadow effect, and hopefully do a pretty good fake of a hearing person.

I CAN’T WAIT, CAN’T WAIT, CAN’T WAIT!





Jumping the banana

8 04 2010

Having been assessed as deaf enough for a cochlear implant, and passing the associated tests, I was wondering how much of an improvement in hearing the implant has given me.  Lots of new high frequency sounds have been popping up whilst low frequency sounds have only just started coming back. It has been exactly two weeks since my cochlear implant has been activated and my world has certainly changed in that short time.

I went for another mapping session to increase the volume and tweak the settings. I can hear music fairly well, rock and piano music sound scratchy with the singer sounding as if he has laryngitis. Not a good sound. However, I discovered that opera sounds good and there is plenty of that on YouTube. I am able to follow a melody and detect when there are words, but not understand them. Japanese music also sounds passable at the moment. I spent a long time on iTunes trying out different styles of music to discover what was pleasant to listen to, as I believe in the power of music to help achieve great things. I have purchased Ravel’s Bolero, Grooploop – Piano (Japanese Animation: Studio Ghibli Soundtrack), John Kaizan Neptune & Také Daké : Asian Roots.

Remember my activation video, two weeks ago, when I couldn’t hear the bells? I can hear those bells now, no problem! I can hear the blackbirds in the trees outside my house. I am now hearing the trains and traffic that have been missing for the past two weeks, as my brain focused on the new high frequency sounds. The tinnitus has largely disappeared in my bionic ear but is still present in my unaided ear (mostly mad musical performances).

Today, I had a hearing test, and I’m jumping bananas. Speech bananas, that is. Whoop!

A speech banana is the shape on the audiogram of all the sounds of speech or phonemes of all the world’s languages. I have never been able to hear most of the speech sounds within the banana, even with hearing aids, so I relied on lipreading and became very good at this.

My new audiogram had my jaw hitting the floor in shock. For once, I was speechless.

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Blue circles : my left ear as it was up until two weeks ago.
Green circles : bilateral hearing with hearing aids (Note: bilateral scores higher than unilateral)
Red circles : left ear with cochlear implant.
NR : No Response

I have yet to be tested wearing a cochlear implant plus hearing aid together, which will increase my speech comprehension scores.

CUNY test (lipreading with sound) > Nov 2009 : 91%

CUNY test (lipreading with sound) > Apr 2010 : 85%

BKB test (listening only) > Nov 2009 : 24%

BKB test (listening only) > Apr 2010 : 18%

As everyone still sounds like Donald Duck, I was not expecting to do very well in my speech perception tests. With daily practice at listening, these figures will improve. I also have yet to receive a lot more increase in sound stimulation, I’m about half way to my target in this respect. So …. *shrugs*

So why am I showing good results in the hearing test, yet a poor performance in speech perception? And how do these results translate to the real world? A hearing test is always carried out in a soundproof room. A hearing test is performed using pure tones, but speech is made up of complex sounds. Add background sounds in the real world, and speech perception becomes even more difficult. Add the cocktail party effect, and it’s not easy to manage in noisy environments with a hearing loss, as you then lose the ability to discern speech in noise. Such measurements however do offer audiologists a way of measuring progress. I now have a baseline to start from (BKB 18%, CUNY 85%) and can monitor my progress against my new figures. Later on, I also expect to be tested in noise. In the real world, Advanced Bionic’s new ClearVoice software is going to help me with the cocktail party effect, and I expect to get this next month.

Donald Duck aside, it is going to take some time for my brain to decode the new stimulation, especially in the high frequencies where I had no sensation before.  An analogy would be (re)learning the roman alphabet, only to have written French instead of English on the page. According to my audiologist, the best strategy to manage this is to practice daily listening to an audio book and follow the unabridged text at the same time. I have collated several links for such rehabilitation work on my cochlear implant rehabilitation page. My audie says, the more work I do, the more new pathways my brain will create, and the better my brain will become at deciphering the strange new sounds. For someone who was born deaf, like me, this process can take up to two years. I need to remember three key things – patience, persistence and practice. It really has helped to have a mentor throughout the whole process to ask questions of, to give you encouragement at every stage of your cochlear implant journey. You can find a UK mentor here and a US mentor here.

My world is opening up and all the colour is flooding in – at last!

(I still can’t get over that darn audiogram!)





Cochlear implant update

5 11 2009

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Eeenie-meeenie-meinie-mo.

Which way shall my hearing go?

Left ear, right ear, brain in the middle.

Pick one, stick one, let the surgeon fiddle.

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I am *allowed* to be silly after 10pm, surely!

Here’s an update on the CI roller coaster ride. I’ve had the CT scan and MRI scan, and completed all the hearing tests. The results are….

BKB (Bamford Kowal Bench) sentence tests

These tests are designed to test speech understanding through recognition of 3 or 4 key words in each sentence. About 40 sentences were spoken at 70db in a soundproof room and I had to listen and repeat each sentence. Then I was asked to lipread a man’s face – he had no expression at all which made me realise how important this it – it was much more difficult to lipread someone who had a deadpan expression!

Left ear 26%

Right ear 42%

Binaural 53%  (NICE cutoff is 50%)

  • Listening and lipreading;

Left ear 91%

Right ear 99%

Lipreading alone; 45%

Pure tone audiogram;

Left ear (decibels) 80, 100, 105, 110, 130
Left ear (hertz) 250, 500, 1000, 2000, 4000

Right ear (decibels) 65, 85, 110, 120, 140
Right ear (hertz) 250, 500, 1000, 2000, 4000

The medical team will have their meeting next week, to decide whether I can have a CI or not. Then I’ll go and meet them to be given the decision. I will be glad to finally find out what my options are.