Ian's Cochlear Implant experiences - an informal blog/diary

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Notes journalling my experience from entering the Cochlear Implant program at the Ottawa Hospital, through the implantation process and rehabilitation...


As many know I took a break to visit New Zealand. You can read about that trip - there's a link on the Home Page. Rehab restarts soon I hope!

I am pleased to report that I have read the most recent chapters of the second Harry Potter book by listening only to Stephen Fry using the implant! Also I registered for an Adult Cochlear Implant Forum at the local university. It was arranged by the Pindrop Foundation http://pindrop.org.nz/ Speakers from NZ, Australia and USA were there as well as professionals, users and others interested http://pindrop.org.nz/news/cochlearimplantforum/ .It was most interesting, and I learned quite a lot. The main speaker Prof Frank Lin from Johns Hopkins University is researching the link between healthy ageing and loss of hearing. He has given similar talks elsewhere - eg http://www.hearingreview.com/2014/11/dr-frank-lin-details-consequences-age-related-hearing-loss-future-avenues-ada-convention-keynote/ I also attended workshops including how to assist others who are wrestling with the decision about whether to have an implant, and another on getting the best out of your CI. Met interesting people and heard the Cochlear Co's latest (public) plans for their products. All talks and workshops were captioned (CART) and that helped a lot! - tiring though!

I continued to do some of my CI rehab exercises - though somewhat irregularly. I am able to follow Stephen Fry reading "Harry Potter" almost 100%, and have moved forward a couple of levels on the "Hear Coach" app. However, my experience with 8 people having 4 different conversations at the Birthday party in Wellington resulted in complete bewilderment, and the other implantee in the room (my brother) was just as lost as me.... Sometimes it is just not possible to take an active role in such environments - but the food was good!!! And occasionally members of the family took pity and included us with direct questions/comments. So overall a good experience, though with some reservations.


2016-12-30 - Christmas 'break', and Rehab lesson #11

With the usual celebrations going on, it was decided that a little time out from rehab was called for, so apart from chatting with friends, entertaining a few people, and listening to music (!) and talking books etc, I had a rest!!!

I have been trying out the Starkey rehab app "Hear Coach" again. I first tried it with just my HA before the CI was activated, and had problems getting beyond level 1. Now, using the CI I can do better. This is not to say that the exercises are perfect, but they do point to a measurable improvement in my hearing ability.... This app and others like it should prove very useful during my sojourn in NZ when other rehab exercises are lacking!

Today I met with Jean to continue my rehab, and review how far I - and she - had come in just 4 1/2 weeks. I am now becoming somewhat reliant on the CI to provide a significant improvement in my comprehension over the HA alone. If I remove it I feel a definite loss of my hearing ability.

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2016-12-20 - Final mapping adjustments, and Rehab lessons #9 and #10

Progress continues, probably faster than Jean and Chantal expected. I forget it is only 3 weeks since turn-on, and though a lot of progress has been made, I want it to be faster! Donald Duck/the chipmunks still sit on my shoulder, gradually becoming less shrill. Quiet conditions and a good voice can allow quite complex conversations. 'Cat' and 'cut' sound the same, as do 'cat' and 'cap' etc so Jean puts me through short drills for those problematic tiny pieces of speech (?phonemes?)!

Rehab session #9 on Sunday followed the usual pattern of working on the difficult vowel sounds and consonants, followed by Jean reading passages from a book, and challenging me with short (though limited topic) conversations. All except the vowels and consonants continue to show improvement...

After all the to-ing and fro-ing about whether Program 1 or Program 2 gives better results, Chantal suggested I keep both, each with two ranges of volume/gain. So now I have a choice of 4 programs, and there is no real reason not to use whichever suits in different circumstances. This is good! I think!

The plan is to next see Chantal at my six month checkup in late May, but there is the option to go back before then if there are problems/issues. Meanwhile I will be letting brain plasticity do its thing.

I had a rather different session (#10) with Jean today during which she asked a couple of her neighbours to come in and attempt simple conversations with me. This was interesting from several perspectives: new voices, new accents (Western Canadian), male and female, new topics which although starting off limited in scope, tended to wander off quite quickly, and Jean able to assess to some extent where problems lay. Instead of an hour or so it was over 3 hours, although for much of the time I did use my HA in conjunction with the CI. But the practice was good.

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2016-12-16 - Tinnitus, PhoneClip fun and games, and Rehab lesson #8!

I have been using the Program 2 since the last mapping session, and at this point havent noticed any difference in comprehension. Voices sound more Donald Duckish than Program 1, and furthermore, I have begun to notice a more obtrusive (louder) tinnitus effect both with the CI on and more especially once it it removed and the tinnitus levels increase. Not painful, but definitely more intrusive. I have lived with tinnitus all my life and am able to 'ignore it', so it does not affect me. The louder tinnitus does stand out though... today I once again tackled some Harry Potter and am finding that on Program 2 the narrotors voice is slightly more natural than before. I found a tone generator app for my tablet and checked what tones and bandwidth I could perceive. Amazingly (!) the tones were much like those I heard at the Mapping session when Chantal did a sweep to confirm the electrode levels. It seems that the test equipment is right. However, as I suspected the frequencies "between" those tested were not clear at all, and a sweep over the band from 400Hz to about 6kHz was a little odd to say the least. Nonetheless music does seem to be something that will come with time, though pitches may not be as expected.

The PhoneClip device allows me to access Bluetooth enabled devices directly from both my HA and my CI. I first paired the PhoneClip with my cell phone and then with both the HA and CI processor. I made a quick call to my home phone voice mail to prove it, but havent attempted a real call yet. Fiona is away in Hamilton for a couple of days so will wait till she gets back to be my tester. I also paired the PhoneClip successfully with my cordless home phone basestation. It is a little cumbersome to use. An originating call must first be established using a cordless handset. The PhoneClip is then conferenced in and then the handset can be released from the call. Ending the call using the Phone Clip Hang-up button works fine, and the wireless link from the HA and CI to the PhoneClip closes automatically after a few seconds. It seems to be somewhat easier for incoming calls, as the PhoneClip Answer/Hangup button can be used, but will have to wait to prove that...

During yesterday's Rehab lesson I reverted to Program 1 but found the change too much, so stayed with Program 2. I had also listened to more Harry Potter - a number of chapters. Comprehension continues to improve, though the timbre/pitch of Stephen Fry's voice is still wrong!

It all puts me in a bit of a dilemma about which CI Program to use; persevering with Program 2 for the time being. I have become accustomed to the tinnitus, although it seemed to change when I started using Program 2.

Jean is stretching me even more during my Rehab lessons, and includes more and more vowel-sound recognition exercises as these are my nemesis at this stage. Many of them sound like a schwa (which they tend to in real speech anyway) but during isolated word exercises they should be clearer. In some cases I hear a diphthong or slide where none exists, particularly in slightly extended short, or long vowels. For example cut and cat sound the same. And in fact there is very little difference, but it would be good to be able to distinguish them. We found that prefixing vowels with w (way, woo, wah etc) made it a lot easier, but prefixing them with l, m, n for example was impossible for some vowels. Suffixes have less effect on vowel recognition. I always get "ee" though. 's' and 'sh' continue to confuse too. Jean is working to personalise the exercises to overcome these stumbling blocks. (I should emphasise that these issues not considered unusual at this stage, and most likely will be resolved in a fairly short time; there will of course be a hiatus while I am sojourning in New Zealand until April!) Part of the exercises now include Jean reading from my "Janet and John reader" - but not the one from junior school; this is the Terry Wogan parody version, explained here. So the language is not quite as simple as you might have thought!

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2016-12-13 - Third mapping session and Rehab lesson #7

CI audiogramThis was measured with program 1. It looks good. BUT dont be fooled. It does not reflect what my brain interprets, just the ability to detect sounds... Much more work needed here to comprehend what those sounds are. It does mean that I am aware of every noise around me, and this has caused me to detect things at levels I havent heard for many years - quiet things like the gentle roar of the garage door opening after I press the remote - and this from 40 feet away inside the house... I am not sure of the significance of the A's on the chart, but I think it is just a symbol! (Note: I checked, and it means the reading was taken "Aided".) What I actually heard was sort of 'white noise' centred on each of the frequencies. I had to determine the hearing threshold for each as in a normal audiogram. I was surprised by the bandwidth covered. (So much for the feeling that I was only hearing sound through a very narrow-band filter). But when I am 'hearing' speech, the sounds in between have to be fed to these separate electrodes, so the processor must somehow interpolate those sounds and stimulate the electrodes appropriately. Chantal and Jean were amazed I had this response so early in the mapping process as it normally takes several adjustments to the mappings to get there, and this is only my third visit! Moreover, the levels were essentially unchanged from the previous mapping in program 1. The Program 2 levels (with the higher stimulation rate) were increased to be similar to those in program 1. I will use this program for a few days to see if there is any detectable difference.

There was only time for a shortened session with Jean this afternoon during which I used the Program 2 setting... It seemed make her voice higher pitched in the Donald Duck domain! Maybe the brain has to get used to the change. I will persevere until the next session. Today Jean added some musical (or rather rhythmical) elements - trying to identify tunes, but in truth, just from the rhythm... One surprise was that the sound of sticks completely lost the initial impulse (click), so that all I heard was the 'wood ringing', and that sounded almost the same as the sleigh bells! Most odd. I suspect the CI processor is getting rid of the peak sounds of the initial impulse rather too completely!

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2016-12-12 - Rehab lesson #6 and other progress!

Today marks the 14th day after my activation. Since the previous entry I have had a number of 'social' sessions with a variety of friends. And I find that the CI is becoming marginally useful - in fact today Ann commented that my ability to hear was markedly better than the last time we got together, just last Thursday - 5 days ago. Thanks to everyone for your assistance in getting me up and running.

On Sunday Jean and I got together for another exercise session. It was good, and although my brain's ability to distinguish between some of the vowel sounds has not improved in 'random word' situations, I now find it easier to follow simple conversational phrases. I should emphasise that the exercises are all undertaken with my CI alone, HA off and left ear unable to hear anything because the ear mould is kept in place. Jean sits slightly behind me so I not able to speech-read, and usually I try not to look at the word lists even when it is allowed! It requires a fair amount of concentration, and Jean continues to keep me on my toes by occasionally dropping in unexpected words which I usually catch - sometimes after a pause...

I am starting to try some CI-only sessions in my social meetings too. I don't expect too much yet, though I was able to do this for a few minutes with Ann today. But it does require concentration.

I have continued listening to Stephen Fry reading Harry Potter in 10 minute segments and it is good, and his voice appears to be 'moving' into a more reasonable register, although it is still synthetic-sounding. I tried using the synthesised voice which comes with my e-Reader app in the Android tablet. The results are also encouraging, though I dont think I could stand listening to it for very long even in the best of situations - the inflections are bad, and phrasing irregular to say the least. THere may be improved options, but real readers like Fry will always be better.

I didn't mention earlier that my second mapping session included comparing the loudness of a series of (what I perceived as) pure tones - 8 or 10 in total, compared in groups of 3... When completed, there appeared to be a consistant volume/level through 2 or 3 octaves, plus the sibilants. Generally, sibilants are still a tiny bit obtrusive, but not uncomfortable, so that is OK. (I wonder if this relates to the fact that my hearing loss is rather 'flat' so I have always heard the higher-pitched sounds - including bird-song and rustling papers etc - so that my brain is attuned to hearing that part of the audio spectrum...)

Although Chantal has installed two different mappings, as described earlier, I have really only used one of them, as it is working for me. The second mapping seems to be at lower levels. I have tried it briefly, compensating for the lower levels, but have not discerned any difference in comprehension.

I was describing my hearing to someone the other day, and we got onto why, if I can hear in good conditions (ie quiet surroundings and no 'echo'), I have such difficulty in 'normal conditions' of relatively low noise. My 'explanation' is that it is because of the interference caused by noise and echoes. Even normal hearing people have difficulty in very noisy parties etc, but they can make out words if they are close and cup their ear, as their brain is not really suited to isolating speech in such an environment. Now in order for me to hear anything, my HA amplifies everything to the sort of levels experienced by normal hearing people under those noisy conditions. An added complication is that the sounds, as well as being amplified must also be somewhat compressed to that the louder peaks dont get through and damage my already 'iffy' hair cells in the cochlea. My guess is that the brain processing has not evolved to work effectively in very noisy environments. Is there any wonder I have difficulty? Of course the CI processor assists the brain by doing some sorting out of speech from noise before passing signals to the nerve in the cochlea which approximate normal hearing levels. Anyway - for what it's worth - that is my attempt to express the situation in lay terms. Maybe there are some erudite papers on the subject, but I don't even know the key words needed to look for them on "Google Scholar" - but some day I shall try!

Some things to think about here, though usually only the abstracts are available.

The number and complexity of the various peripheral devices I (will) need to have access to during a day is growing - though I haven't tried them all yet! Having them all available will be particularly necessary when I am travelling.

  1. CI Processor and coil

  2. Rechargeable batteries (3) and associated charger for CI processor

  3. Simple remote control for CI processor

  4. Remote assistant for CI processor

  5. Remote microphone - works with both HA and CI together

  6. Phone clip to pair with Smart Phone - works with both HA and CI together

  7. Hearing aid

  8. Batteries (disposable) for hearing aid

  9. Remote control for hearing aid (actually an iPod Touch)

  10. Android Smart Phone

  11. MP3 player

  12. 8-inch Tablet (as e-Reader and internet access (using wifi)

  13. 10 AmpHr battery pack with its charger and cables for charging peripherals on-the-go

  14. Waist pack - (it may turn out to be too small and have to be replaced by a sling pack)

  15. Protective case for CI and HA

All shown here.
peripherals etc

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2016-12-08 - Rehab lesson #5!

I picked up the modified ear-mould for my HA this morning. It had been rather tight, and often got uncomfortable. But this seems much better. So I now have up-to-date Blue-tooth enabled devices in both ears.

Had a nice lunch today with a potential CI recipient. I think/hope my positive experiences are beginning to influence her decision...

Then it was off to see Jean for what would be my 5th lesson with her. We seem to have come a long way since the first session just 8 days ago. I wanted to see what difference the new mapping made to my ability to distinguish various speech elements. It appears that in some cases I was a little worse, particularly in recognising vowel sounds. I wonder if that setback is caused solely by subtle changes in the mapping - with a day or two more practice it should come back. Later we found that my recognition of words had progressed to the point where Jean was able to say simple sentences and I could repeat them back... That was not possible just a few short days ago - we both got a little emotional! Voices still have that Donald Duck quality - or maybe it is chipmunks! as others have described it. (When describing it to a more technical radio person, I said it sounded like "single-side-band" radio with the carrier reinserted in the wrong place - eventually, I'm assured, the brain adjusts to get it more nearly right and Donald Duck is replaced by a 'voice synthesiser sound'.)

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2016-12-07 - Wednesday - Second ("tune-up") mapping appointment

The last couple of days activities included having sociable coffee with various friends, and another practice session with Jean. Progress is continuing, and we are both pleased with my increasing (though still limited) comprehension. Basically, the exercises are equivalent to "multiple choice" questions, and the vocabulary is quite small. But Jean spices it up by throwing in unexpected words, and I usually understand them, or at least know that they were not on the list! The biggest problems appear to be around catching initial consonants, and distinguishing 's' and 'sh'. Jean is good at adapting the lesson plan to concentrate on such problems, and also to take advantage of how I see/hear the world - in the sense of wanting to 'understand' the 'why' of the problems.

I know that in some senses I have been trying to run before I can walk, for example, by listening to talking books. (My experiments with reading in parallel with listening to talking books seem to show improving comprehension too, though again, it is only occasional words or short phrases. BUT! a week ago it was just buzzes and hisses...) However we agree there is no harm in this, in that the only possible danger is that I would get over-frustrated by failure! My response is that I accept the limitation, but am not really frustrated by it, although I may get a little impatient but in a passive way! I am exposing my brain 'hearing centres' to as much 'real-world' sound as possible in the belief that it will maximise the opportunity for adaptation/plasticity to take place.

Mary's efforts to find people to volunteer for social coffee meetings have been very successful, for which I am very grateful. Mary and I agreed on Sunday that one session per day, perhaps 5 days a week would be sufficient. And with Christmas coming up, would be more sensible for all concerned. It is undoubtedly useful to continue, but, as I commented earlier, just not so intensely! I need a day now and again to do laundry, housework, etc :^)

Today I saw Chantal for the first adjustments for my implant after just over a week of use. It seems I have made good progress, and we were able to establish a slightly different mapping for program (1). Chantal also provided another mapping in program (2) which uses a different 'stimulation rate'. Interesting article here.. (I will have to try and start understanding what the implications are, but suffice to say, the initial effect seems to be the same as the earlier rate.) Overall the levels are higher than in the initial mapping. It will be interesting to see what effect these changes have, particularly in my practice sessions with Jean.

I also got all the 'toys/goodies' associated with the processor, including rechargeable batteries, drying kit, and the "Phone Clip" which will eventually assist in using my mobile and also my home phone. The other important device is the "Remote Assistant" which gives me access to a number of settings on the processor. Lots of manuals to pore over. And a useful backpack to carry them all in!

Interestingly there was a little bag of pieces that apparently allow the processor to output audio through a receiver inserted in the canal of the implanted ear. I think this is normally used with people who have the "hybrid" implant electrode. I wonder if the processor can act as a simple HA when I listen to music! Normally Hybrid operation makes use of residual hearing in the lower frequencies, and implant stimulates the nerve only at the higher frequencies. So my requirement is somewhat different; ie have a program that switches to audio-only, turning off implant stimulation completely. Something to follow-up/discuss.

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2016-12-07 - Tuesday - Rehab lesson #4

More practice!

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2016-12-04 - Sunday - AD+5

After my cup of tea in bed and a spot of crossword solving, I dozed on my right side for over an hour this morning. When I woke up and headed shower-wards I felt quite giddy. It was much worse than my usual post-sleep imbalance, but it quickly wore off and the room stopped 'spinning'. Again this is something I had read about (and brother Bill had mentioned). It is not a concern, but strange that it seems to be correlated with having my head turned the other way, so to speak. Will see if it happens again.

I extended my research about rehab apps for CI users. There seems to be several options out there, and I suspect the quantity and quality will grow. For now this is what I have. Note that you may have to register to access some of these... but registration is free.

Rehab - lesson #3

Another session with Jean, we seem to be rushing through her lesson plan, but she is adapting it as we go and we do repeat some sections to consolidate what I am 'learning'. I used quotes there, because this learning is really an unconcious process of the brain adapting. I try not to think too hard! I also tend to 'remember' sounds and word lists, so Jean often adds an unexpected word or two to the list she is using... Again, I can now catch these more easily and even if I dont recognise them, I know they are 'new'!

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2016-12-03 - Saturday - AD+4

Quiet day today with socialising with Jill and Glen in the morning and a brief visit from Heather in the afternoon.

Did a little "parallel reading" of Talking Book and print. Seems a little easier - but not ready to go solo (ie listen with CI only) yet!

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2016-12-02 - Friday - AD+3

My word, only 2 full days since activation, and it does seem longer.

I meant that to sound positive! What I am getting at is that already I feel glimmers of where this is heading. Having read and heard many stories of CI implantees' journeys, I am prepared for anything! The ONLY common feature of implantees is that their journeys are all TOTALLY different! Would have been nice to be among those who were able to 'understand' speech from the outset, but I recognise that this level of comprehension can take from a few days, to a year or more. I will be quite happy to be in the middle of the pack so to speak.

A bit less rushed today with one social engagement with Anthea and Don in the morning, and dinner at a local restaurant.

Today I did a few informal tests/exercises/experiments. First I tried a piano to get some indication of how various frequencies mapped into the 'tones' excited by the electrodes. Inconclusive, unmusical, and not as useful as I hoped... Next I tried listening to a talking book while reading along. This does seem to be a really good way to go. I have the full set of Harry Potter books in both forms, with the UK version read by Stephen Fry. He has good voice and clear enuncation. Only a page just to taste it, but I will do more in a few days. I also attempted listening without reading for a few sentences and felt quite emotional when I found I was able to catch a few (a very few) words - this thing really works and it will get better!

And it is only AD+3.

Actually slept for an hour or so on my right side for the first time last night... not uncomfortable, just "different". The area adjacent to the scar is still numb, but I think it is getting less so. All is well.

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2016-12-01 - Thursday - AD+2

Today marks the start of what looks to be a fairly intensive couple of weeks of socialising, arranged by Mary W. I thought that living alone would not provide sufficient opportunities to expose my brain to 'normal everyday conversation'. I have tended to be a little reclusive since my return from NZ in April, and while I quite enjoy the peace and quiet, finding much to do to occupy my time and mind, it is critical that formal training is accompanied by this type of exposure.

As a result of Mary's efforts my diary is quite full, and today I had no less that 3 'appointments', two for informal conversation with friends and one with Jean to do some hearing exercises. I think we will have be a little less intense! I found it rather tiring. Thanks to Pam and George, and Nickola and Dave for putting up with me again... I always enjoy our get togethers.

Rehab - lesson #2

Jean's lessons involved more of the same sound elements in various combinations of small sets of real words in a list with me repeating what I thought I heard. Multiple choice questions really so not too difficult - or easy either. We also worked on word lists, peoples names, colours, numbers 1-10, kitchen objects... It was a relief to realise that I was already beginning to pick up meanings! In the beginning, the main input was the 'cadence' of the word(s) and some recognition of the starting consonant, middle vowel sound, and final consonant, and similar combinations. Certain sounds prove difficult ('s' vs 'sh' for example. Others are almost lost ('m' vs 'n').

I had realised yesterday that the level of the perceived sound through the CI was lower than that in my left ear and then recalled that when we were doing the activation, I had inadvertently set my HA to lower gain than usual - the office being quiet and every one being well-behaved. Fortunately Chantal had set up a second program with considerably more gain, and since this morning I have mostly used this program, and actually at maximum volume for much of the time. This helps during exercises, but is not always so good in other situations where I do reduce the gain.

At the moment the lessons concentrate on the basic sound/speech elements, and are extended somewhat when I was supposed to understand a mixed word set. Not a chance yet - but this is all part of the plan that Jean has to determine where to go next, so it was not time wasted. We both can see the progress I have made - and look forward to building on it next time.

I managed to pair the Resound Multi-mic with the CI and used it to connect wirelessly with my mp3 player. This allows me to 'read' talking books, and listen to the radio: both good sources of voices for training. It will also allow me to hear the output from various training apps (available for tablets and smartphones) directly too.

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2016-11-30 - Wednesday - AD+1

Not wanting to waste any time, I had already arranged to go to a regular meeting of former colleagues for coffee in the morning. I was not surprised that it was a confusing experience! There was no recognition of any words from the CI and its contribution was to reduce the tinnitus (masking), replacing it with something else equally, or even more, distracting... - but the coffee was good and I was able to get the gist of discussions with the help of one member who would occasionally summarise and/or clarify.

Rehab - lesson #1

I met with Jean in the afternoon to start working through her plan for my rehabilitation. It is very extensive and she admits that she is enjoying the challenge of doing this type of work again, albeit as a volunteer! We started with simple elements of sound, including vowel sounds, and some of the trickier consonants. All of the exercises are done without HA assistance, without speech-reading, and sometimes covering my left ear to ensure all sound is excluded. After an hour or so my mind began to wander (almost wrote wonder - and that might have been a better choice) and we chatted. Some progress discernable, but the road ahead is long!

I kept the CI on for most of yesterday and this second day, in the belief/hope that the more exposure the brain has to this new kind of sound-like stimulation, the earlier it will adapt... I will likely continue this. I noticed that it became less distracting as the day wore on. I will take short (1 hour or so) breaks each day. But generally the plan is to wear the CI and HA at the same time for much of the day.

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2016-11-29 - Tuesday - ACTIVATION DAY (AD)

Fiona, Jean and I went to the CI clinic this morning and met with my audiologist Chantal to go through the process of activation/turn-on.

My appointment lasted about 2 hours (more details below). After a successful activation at about 11am, I went home wearing the implant, though it was not yet helping!!!. I will be working with Jean and others over the next while to improve the situation.

I have been encouraged to use the CI 'several hours a day', though I intend to use it most of the time from the outset -

Interestingly, I switched off my HA for a period this afternoon, and read aloud the notes that follow. And it seems to me that some speech comprehension (internal brain mapping) has already started, in that the Donald Duck (quack-quack-quack!) sitting on my right shoulder (see below) was making sounds that appeared to be the words I was reading aloud - not sure I would actually understand them without reading!!! But it is a start.

Next steps include continuing exercises set by Jean, and daily 'conversation times' with various individuals - thanks to Mary who is arranging a rota. I have one of my 'coffee meetings' to go to tomorrow morning. It will be interesting. I will likely try daily periods when I turn off my left HA and absorb the sounds of living solely through the CI, but mostly I suspect bi-modal (HA+CI) will be the most successful and therefore what I shall use/practice most.

So - although the CI does not yet seem to provide any benefit to understanding speech, or even sounds around me this is no surprise. Hard work and perseverance will be needed. However, I am encouraged by the initial tests and the experiences, limited though they are.

The short story is I have now started on my journey to recovering at least some of my hearing so that social gatherings may become more practical and less something to be avoided...

So today I was "turned on" at 11am!

As I had been given a new type of electrode array, Chantal gave me a brief hearing test concentrating on the amount of residual hearing in my right ear. We will be monitoring that to see how much hearing is recovered. I had noticed that although initially I heard nothing except tinnitus, over these first few weeks since the operation, I have regained some hearing. It is not yet either useful or as good as it was pre-op but may turn out to be useful in the context of appreciating music - though probably not speech.

I was introduced to the CI processor, and the key parts, including the remote control, battery pack and the all-important head-piece that is attached magnetically to the implanted transducer on my skull above and behind my right ear. The processor hooks over the ear, rather like a large BTE HA! The strength of the magnet in the headpiece is adjustable, and that required a little fiddling to get just right, and I now know how to adjust it if the it starts to fall off when my hair gets too long and in the way.

Calibration, "mapping" as it is called.

Of course it is necessary to determine whether the technology is working, and this involves some technical steps confirming connectivity of the processor with the 22 electrodes in the cochlea. It seems that all of them are operational.

Next a number of signals were sent from the test equipment to some of the electrodes (not sure how many) and I was asked to indicate when I could detect them. In some cases this proved difficult in that the tones were close to those of my tinnitus! It was also necessary to get the volume level comfortable and at a level similar to that from my left ear with the HA active. With some 'trial and error' we arrive at a point where I was able to say it seemed right! After some experimentation, a suitable starting "map" was determined, and it was loaded into the processor, along with a second 'louder' program which I can select if I feel extra volume is needed...

The real activation starts

What did I hear? Well, "Donald Duck" is a good description. Not much intelligence apparent in the sound initially, but definitely it matched what was being said in terms of timing, loudness and rhythm. This including what I was saying - somewhat disconcerting to begin with... And there were some background 'sounds' as well, which I was unable to identify. This interference was ignorable!

There were no 'expectations' from the audiologist or from Jean (who is a retired Speech-Language Pathologist, ie therapist) or from me either, (although I was naturally hoping for unrealistic achievements from the get-go!) The first live 'test' of comprehension proceeded - a list of 5 or 6 colours was handed to me and first Jean and then Fi read random words from the list with a screen covering their mouth to prevent me speech-reading. I turned off my left HA and was able to identify some words from the list, Apparently I did well enough, ;^) and we were all allowed to go home after some adjustments to the loudness range in a couple of programs in the processor.

I was given several sheets of paper with information about the CI, as well exercises to listen for and identify various sounds and check them off on a list. These sounds include car/truck passing outside, dripping tap, shoes dropped on floor, voices in another room, vacuum cleaner, voices (discriminating man/woman- but not what they say necessarily), footsteps (own/others) - probably a hundred or so. So now I have an excuse to go round the house and identify all sorts of beeps and bangs I have heard but been unable to track down and identify since I moved into this place 5 years ago.

All this took just under 2 hours, and I was/am pretty exhausted by it.

One other (relatively small) point concerns delays in sound perceived through the CI compared to to those through the HA. When first activated, this delay (which may only be a few tenths of a second) was quite distracting... after less than an hour, the delay is becoming 'accepted' by my brain, and is not nearly as distracting.

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2016-11-28 - Experimenting with right ear HA

At the support group I chatted with Chantal and mentioned that I thought I was getting some hearing back in my right ear. I asked about using the old HA and since it seems not to be an issue have tried it for a few days. I certainly can hear something, and it seems to be improving slowly, though early days. I think the main short-term benefit will be the masking effect on lhe tinnitus. So will probably continue to try it occasionally, even in tandem with the CI!

Chantal also mentioned that Dr Schramm was considering using this new electrode in all? his future patients, if mine proved successful... a guinea pig!. I hope it works for me, but also for other interested in retaining some pleasure from 'natural sounds' and music.

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2016-11-23 - I didn't realise hairwashing would feel so good! and
Support group website

Just over three weeks since the operation, and this last week has been pretty good. Appetite is back, have been out for dinner with friends, and had another friend over for dinner last night. No signs of the slight "imbalance" I had after the operation - over a week since that went away,

My new Resound Hearing aid is very good with its remote microphone, but am having problems with the ear mould. It is too tight and irritates my ear in a couple of places, even after some modification. Neil, my HA audiologist is very understanding and together we work on a solution, but today I asked for a new mould! Hope it doesn't take too long. I still have my old HA and it is not that bad, so I can survive.

Yesterday was a milestone, in that I was able to wash my complete scalp for the first time in 3 weeks. WHAT A RELIEF! I still have to be careful around the scar, but at least I feel clean. Fi has been good about washing half my head, and applying hydrogen peroxide and antiseptic to the scar. Now I can do it all myself... We both think there is single stitch left in the wound - it was probably covered by some scabby material. I am going for a flu-shot at the clinic today, so will get someone to check it.

After several weeks of trying to get used to the new ear-mould for my HA, I had to give up and asked the audiologist to have it altered by the manufacturer. It felt very tight, plugging my ear and it also caused some irritation in a couple of places. Neil had tried relieving the pressure, but in the end we decided to send it back. So I have to make do with my old HA, which in fact still works almost as well as the new one, but does not have the Bluetooth microphone support - which in itself made life a lot easier in many situations.

Found this interesting paper about setting up "bimodal" hearing: http://www.hearingreview.com/2016/03/contralateral-ear-bimodal-programming-considerations/ and passed it on to Neil for his consideration.

The CI Support Group meeting was last Saturday, and again found it invigorating. So much goodwill and encouragement... I continue to work on implementing a website for the group, and think I have a suitable framework/structure. One of the core group suggested I investigate a Content Management System, and although I felt a bit sceptical having seen how steep the learning curve is for WordPress, took a look at Wix. Within a day or so I was able to migrate the draft content from my hand-crafted website into Wix and am pleased with the result.\

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2016-11-15 - Dressing and stitches removed

That's it. A quick visit to my GP's office and it is done!

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2016-11-07 - Lovely day for a walk

Tomorrow will be just a week since the implant procedure, and am over the effects of the anaesthetics. Not dizzy at all, though I do feel a slight instability if a I move suddenly, but it is not really an issue. Can walk and drive easily now.

I have noticed that the tinnitis in both ears is about the same level as before, but since there is no (or virtually no) sensory input to the right ear, it stays quite constant... not too loud thank goodness, but noticeably more than the left ear when I have the HA inserted....

The weather tempted me to take fairly leisurely stroll to the library - about 2k return, and I was fine.

My appetite appears to be back to normal, and for supper I enjoyed one of my home-made Spaghetti Bolognese dishes from the freezer! Up to now I have managed to pick at bits and pieces and sometimes have a small portion of pie etc, but it is good to want to eat properly again.

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2016-11-06 - The weekend

Nothing much to report. I did a little grocery shopping late on Saturday afternoon, and then needed to rest for the evening. And on Sunday had my usual social engagements with friends. I kept both visits shorter than normal, as I still find I am easily tired. I put it down to the after-effects of the anaesthesia. Hope I am right.

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2016-11-04 - Hearing Aid check

Follow up for removal of stitches now scheduled at the WCFHT on 15 November. That will be a relief. Not too bad up to now though. Fi assisted me in washing the left side of my scalp and the gore/blood is gone. So I can once again appear in public.

For my first outing, I had arranged to visit my HA audiologist, Neil, on Friday afternoon. It was nice to get out, and Neil was able to make a couple of minor adjustments to make the aid fit better, and to set the loudness level to my liking. Regretably it is not really significantly different from my previous aid in terms of improving my hearing, but at least it is not falling to bits. It also comes with a remote microphone which is a great boon in some situations.

I have not tried my old aid in my implanted ear yet to see if there is any residual hearing. Will wait until the stitches are removed next week, though a rough test of placing a fairly loud alarm near that ear suggested there is little hearing at the moment. I dont know if this will change with time. The cochlea has after all been subjected to some traumatic treatment!

A frozen dinner and yoghurt for supper.

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2016-11-03 - Recovering (Thursday)

I found myself in need of a little reassurance in the evening, after Fi had returned to her apartment, so called her over. I thought my ear felt a little warm - not swollen, and I didnt have a temperature. She called the Day Surgery unit and explained, and they were happy to confirm that we should keep an eye on it and not rush down to emergency! By the morning, I felt better, and in retrospect, it was likely just being tired that magnified the issue. But it was good to have Fi around for that brief period. She eventually went home once I had settled down for the night.

Was pleased to have a nice Tortiere from Heather P for couple of meals, as well as some scones with jam and butter.

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2016-11-02 - Day 1 Post Surgery!

Once home I had some more breakfast and took a mild painkiller (Tramadol) a couple of times which meant I dozed much of the day, with snacks in between.

Found I was a little dizzy as expected and had to take some care walking around, but was not suffering any significant discomfort. No nausea and was easily able to cope.

In the evening I was pleased to eat some Tortiere provided by Heather P. and after watching TV for a few hours, doing crosswords, and trying to read, I 'hit the hay' around midnight, taking a painkiller to help me sleep and awoke at 6am.

A quiet day with small portions of food, interspersed with liquids. Took a couple of Tylenol during the day.

Noticed that my tinnitis was slightly different with some extra buzzing intermittently on the right side only... Maybe the tinnitis mechanism 'recorded' the drill sound!!! Any way that particular buzzing seems to have gone away by the evening...

Not getting much sound through the right ear, though I think there is still a little getting through. It will be interesting to see how that progresses as the new electrode array is supposed to improve that chance of retaining some sound perception (to assist in my enjoyment of music rather than speech comprehension!) Later will try inserting the hearing aid - meanwhile still have the faithful tinnitis in both ears.

Left ear working as badly as ever, but closed captions are wonderful... so lots of TV - time to catch up on various series I had missed!

Confirmed that I will be seeing the HA man on Friday.

Follow up phone message from the Day Surgical ward, but as there are no concerns I didnt have to respond.

(Another case of communication difficulty... they should really be tuned in to the fact that CI patients may prefer email!!!- Advocacy calls.)

Email from Chantal giving activation date of 29 Nov., and follow up appointments for 3 weeks. Great news.

Still waiting for follow-up appointment to remove stitches etc, but that wont be for a week or so I think.

The post surgery notes are somewhat different from the brochure in terms of having showers, dressing removal and hairwashing. Thank goodness it's a matter of a couple of days and not weeks! (Reminds me that Elisabeth mentioned her having a turban style dressing for 2 weeks - but that was over 20 years ago when she was Dr Schramm's first adult CI patient at The Ottawa Hospital.

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2016-11-01 - Surgery day!

And an early start to be at the hospital for 6.15 am with Fi - poor lady - very early for her and me. I was prepped and waiting on a stretcher outside the OR by 7.15 and Dr Schramm and his team including Chantel appeared just before 8 am. A final check that I was me and the correct (right) ear was marked with indelible ink by Dr Schramm, and it was confirmed that the latest 'thin' electrode array was to be used. Then into the OR and ... shortly after I was rolled into recovery ... (at noon) after about 4 hours in the OR! I gradually came round and by 2 pm was in the post surgery ward where I eventually spent the night...

Although I had made arrangements with Heather P to check the dressing at home in the morning, a couple of minor issues helped change the plan so I stayed overnight. Partly it was because several phone calls would have been necessary and I couldnt do it, nor make proper decisions about who and when to call in my still befuddled state, and partly because my heart-rate had caused some minor concern and I didnt want to have to make further decisions about staying later. In the end, my pulse settled down, and I rested (rather than slept) until 5.30 am and Fi then picked me up, after I had eaten a yoghourt and fruit for breakfast, at 6.30 am... Another very early start for us both.

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2016-10-26 - Electrode choice resolved

Note from Chantal

"I have good news! There a very good chance that you will get the slim electrode. They have managed to book training before the surgery. I will confirm with you the morning of the surgery. See you Nov 1 around 7:30 am in the OR."

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2016-10-03 - Choosing the implant and its accessories

Today I met Dr Schramm and discussed various options concerning the surgery. The most interesting point was the availability of a new thinner electrode array that Cochlear have introduced, which has the adcantage of preserving hearing after implantation. "For preservation of hearing, Cochlear has recommended the new Slim Modiolor Electrode (CI532)."

It remains to be seen whether Dr Schramm can obtain surgical training using this new electrode before Nov 1, 2016. I said this is a "would be nice", and not something for which I would delay the operation. Therefore I prefer to go ahead with the surgery on 1 November if the training could not bew done.

I met with another audiologist (Shelly) at the Cochlear implant clinic. Apparently the implant comes with a number of the Resound-compatible options we discussed, so will need to decide which one to get with the HA... At the moment it looks like the streamer would be a good option, as the CI package can include both the phone clip and the multi-mic (or at least a mic that allows a stereo connection to another device eg radio or TV, but have to check thatt)... So that would give me all the useful bits of bluetooth and wireless connectivity.,.

While I was chatting she said that they did take "self-referrals" - best to have a fairly recent audiogram! but they can talk to you about the options etc....

Hearing Aid

Am now set to get a replacement HA which can connect with a bunch of attachments for phone, radio, TV and hearing loop!!! Lots of stuff to learn about, compatibility with the CI adding to the mix. I found a new audiologist for the HA - "Hear Fine" at Bells Corners, an independent company. The owner Neil is a young, enthusiastic, and willing individual who has done lots of research for me! Great.

Looks like I will get the Multi-Mike now with the HA, and the other options will come with the CI. I can change my mind!

Cordless phone and Bluetooth

It seems you can get a cordless phone that lets you pick up calls on your cell phone, but that is not what I want as I dont intend to dispense with my landline! I want to be able to use the bluetooth Phone Clip to pair my cordless phone so I can make and take calls over the landline. I believe it requires the cordless phone to support "“BLUETOOTH HSP Support"... still investigating...

Late addition: I think I have just got the solution!!! Panasonic have a series of consumer cordless phones that include the Bluetooth HSP (head set profile) eg KXTGE263 - and I have ordered one!

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2016-09-22 - CI support group meeting

The meeting with the CI support group on Saturday was excellent... As you will see below, I felt much better at the end having met even more people with CIs.


Extract from note to friend interested in CI

"I went to the CI support group meeting yesterday, and Jean came too, as her interest in CI has been (re)awakened!!! (And it turns out she knows the person who started the group - Elisabeth - as well as a few of the members who were her pupils.)

"It was FANTASTIC and you would have learned a lot even without any background research!!!

"There were about 25 to 30 there, mostly with implants, some spouses/companions, and a few like me waiting or wondering (like you!) The 2 hours flew by and I could follow every word - there was a stenographer there with a CART system so that the words spoken during the entire meeting appeared on a screen with no perceptible delay, much better and more accurate than Closed Captions for live news etc on the TV. Very impressive. If you havent seen it look at this description

"Everybody spoke, getting people up to speed on who they were and what issues they had had since the last meeting, and many had questions relating to their implant or other deafness issues. The answers came mostly from other users who had "been there" or from one of the audiologists from the Civic, Chantal, (who is the one I had my assessment with). The feeling of support was tremendous.

"I think one important message I now realise and had reinforced yesterday is that the earlier the implant takes place, the better. You can be assessed and they will then follow up if you are not yet ready. In my case the implant will be in the ear which is "least useful" which means there is little to lose. It also means that I can continue with a hearing aid in the other ear, and have the HA work in concert with the CI - brain plasticity at work!

"I found fascinating youtube videos the other day by searching for:

adult cochlear implant switch-on youtube "


Another aspect I hadn't picked up on was that living alone is not a good idea!!! It means that I am not exposed to conversation in a real environment with everyday sounds at the same time (traffic, dishwashers, TV in the background etc) and that exposure really helps to 'acclimatise' the brain! So visiting NZ and having the benefit of being with people much of the time is good. There were other hints about how to 'train' the brain too, like listening to a talking book and following along in a print version. So I can read the entire Harry Potter collection again, read by Stephen Fry - I bought them for Chris over the years... and there are other TBs I have too.

I hadnt really realised that I missed the radio as much - but I recall that I listened to current affairs shows when I was out walking, or in the car and havent been able to do that for a few years now. Can't wait to do that again. .

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2016-09-13 - And now for something rather different...

My email to Neil HA audiologist

"In November I will have a cochlear implant (using the Cochlear Corporation device). I also need a new hearing aid for my "good" ear, and I understand the Resound series of aids use compatible Bluetooth accessories...

"I would like to meet to discuss this and the options available to me."

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2016-07-23 - More preparation

Well, I have had all the tests and apparently meet the criteria now. I expect to meet with the surgeon Dr Schramm soon to get more details on the timing - surgery might be in the next few months.

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2016-07-13 - Notes wrt Disability Tax Credit

Definition of "hearing": ability to comprehend *speech* in a "quiet environment" with hearing aids (and/or cochlear implant) but without Speech reading. Also ability to listen to the radio, or TV (without closed captions), plays, public talks (with or without listening enhancements such as loop systems), Definition of "comprehend": make sense of sounds in terms of the content - ability to understand that content with little chance of error.

Definition of "Quiet Environment": Normal conditions for listening to conversations without undue difficulty, such as in a domestic situation with normal household noises and other conversations going on, in a car with windows closed, in a theatre during a play, in a hall with a person giving a presentation, a quiet restaurant. (Specifically NOT a private office - eg doctor, or a sound-proof booth!)

Where I cannot hear:

in any of the above quiet environments without either having the person continually repeating, or being within the personal space (too close) of the speaker, or in some cases removing to another even quieter space!!!

eg When being assessed by an audiologist, the soft noise of the climate system made it very difficult to hear what was said, even when close, and the solution was to turn off the climate system during the interview!!!

Even in a private house, I findd it difficult to fully comprehend a one-on-one conversation when not directly facing the other person within a very few feet, and it is even more difficult if not impossible if another conversation is taking place in the same room between others present.

See Barber vs The Queen para 53:

"[53] The Court is required to make a determination of what a quiet setting is. The Court is satisfied that a quiet setting does not mean a doctor's office. The Court is satisfied that a quiet setting does not mean a sound booth in an audiologist's office. The Court is satisfied that the quiet setting must be the normal setting that a person encounters during the day when they are performing the functions of daily living. That means in a room talking with people, that means in a house when their parents are there, when there may be other activities going on, when they are preparing dinner or perhaps where the phone is ringing or when other conversations are going on. It does not mean that a person has to be able to hear when there is a substantial amount of noise or an extraordinary amount of noise. It is in between, but surely it must refer to a normal situation in which a normal person would find themselves during the context of conducting their life during a normal day.

Source: Barber v. The Queen, 2001 CanLII 863 (TCC), par. 53, <>, retrieved on 2016-11-29."

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2016-06-17 - Getting prepared

Well, the processing has started. I had a balance test today - a baseline in case things mess up!!!

Have filled in the forms for the MRI and various other bits and pieces as well as the pre-op questionnaire.

Now I just wait! The team are aware of my upcoming trip to NZ leaving in early January 2017, and that will be taken into account in the scheduling.


Extract from my email to Bill and Shirley

"I have decided to go with the Cochlear Ltd implant and will also be updating my hearing aid for the left ear so that it can be coordinated electronically... I understand from the team Audiologist that the Resound devices (HA) are the best in that respect. I dont think either of you have tried this, but may be wrong. Anyway if you have any experiences that suggest something other than the Cochlear Ltd device, I would be interested to hear.

"I will be joining a support group in September after the summer hiatus, so hope to get some feedback there too."


Rather like the feeling we had when Chris and I made the decision to emigrate to Canada, things will just happen and I will inevitably end up having the operation when the fates decide!!!

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2016-06-08 - Email to the CI audiologist

Extract from my email to Chantal;

"I must thank you for the interesting and educational experience last week. As I said at the time, I was surprised (gobsmacked) when you determined that I was an immediate candidate, and appreciate your explaining the ins and outs of the process. I believe you said that it was likely that various tests and procedures could be requisitioned and the process started as soon as I give you the relevant information. Then the actual operation can be scheduled later.

"My feeling is that the operation should be done next year (April/May time frame after I return from NZ) giving a prolonged window (until January 2018 when I am likely to want to travel again!!! I also recall you mentioned that the 'best time' was before the end of March, so am sorry I dont seem to be able to get that to work with my plans. (My cousin suggested postponing/cancelling my trip to NZ, but I think not!!!)

"I have chosen the Cochlear Ltd device since my brother Bill and cousin Shirley seem happy with theirs! ... I think you said you could give me recommendations about hearing aid manufacturers - and maybe even types - that are able to "interact" with the CI processor etc. No rush on this. I see me ENT Dr Young next week and expect to be visiting hearing aid dispensers over the next few months (ADP funding will be available in September I believe, when my 5 years is up.)"

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2016-06-06 - Encouragement

As expected, Shirley has responded enthusiastically to my CI news, even suggesting I postpone my NZ trip, (but that wont happen!)

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2016-06-01 - The Gobsmacking

And this just in-----

I am feeling a little bit "gobsmacked"!

Today I had an appointment with the local Cochlear Implant team at the Ottawa Hospital for a "suitability assessment".

I was expecting to hear that I would (or would not!) be a suitable case, and if suitable, that they would place me on their list so that at some future date I would be offered the opportunity to have a Cochlear Implant!

In fact, my assessment was positive, and Chantal (the audiologist) said I could move into the programme as early as "now". Not that "now" means an immediate operation, but it does mean they could start the preliminary tests/examinations and the operation could be performed in about 6 to 9 months at the earliest - this estimate is based on the average time to get the tests done! The operation itself could be deferred for a reasonable period until I was "ready".

Wow! I was not prepared for that. I really hadn't realised how bad my hearing is now - others might perceive it differently - though I knew it was getting worse!

In fact she said, there was no great rush, and I should take whatever time I needed to make the decision to go ahead. Fatal words for a procrastinator like me to hear! But she also suggested that I dont leave it too long, as adapting to the implant is easier when I am (relatively) young.

So, a surprising outcome.

My latest audiogram:

audiogram

And for comparison, 1993, 1995, 1999, 2009, 2011, 2013, and 2015:

audiogram
1993

audiogram
1995

audiogram
1999

audiogram
2009
audiogram
2011
audiogram
2013
audiogram
2015

So now I am considering the options. Timing is complicated by my next trip to NZ which is set for mid January to Mid April next year (but during which I will be able to have more discussions with brother Bill and cousin Shirley - both CI users), and a few other things going on. I wont be making a decision until I have had a talk with my ENT doctor (later this month) and others (you know who you are), but I will be going ahead in the next year or so. I still have sufficient hearing in my left ear to function (perhaps not normally, but adequately) and that was taken into account in the assessment. The implant would be in my right ear and I should be able to use the combination of hearing aid and CI to give enhanced sound perception, at least initially. Which would be a good compromise I think.

Exciting! Scary! (I hate even the thought of operations)!

For now I will be reading about CI with a lot more focus. I am looking forward to joining a CI support group in September. Oh!, and I will be finishing the Speechreading classes I started in April - timely.

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2016-05-25 - The beginning

Have now completed 8 of the 10 sessions of speech-reading, and learning a lot! Most of the practice sessions are completely silent, so there are not even any clues from what I (mis)hear. Also the various different ways of pronouncing phonemes (rhotic NA vs non-rhotic UK vs NZ) will be an ongoing issue for me - almost 3 different languages - even forgetting the vocabulary. And usually the context is vague so that makes it really difficult. Still the small class (5) and attentive instruction is good.

I am seeing the Cochlear Implant team next week (1 June) for an assessment.... not expecting to be 'done' in the short term, just getting me on their books. Should be interesting...