The end of it all...

Well this blog has done it's job. It has been a record of my highs and lows through the CI experience and allowed me to connect with other CIers among the late deafened. I'm now the proud owner of an Advanced Bionics CI 'blob' on my head, I'm restored to something like functionality, and I am a cyborg of six months experience and counting. Time to close this blog and get on with life. Thanks to all for their comments and emails. Good luck to you all.

"Houston, we have a problem..."

Well, not quite as significant as Apollo 13, perhaps, but a problem none the less.

The 'lock' or 'hold' enabled by the CI processor is usually fairly robust. Bang a drum next to the mike in the earpiece and, while there may be an overwhelming sense of noise followed by momentarily depleted 'hearing', things soon return to normal. The CI can 'hold' the signal.

Not for me of late though. While my audiologist has been thinking of every conceivable way of tackling the problem (and, Vicky, you have gone above and beyond the call of duty on this one) - from increasing the RF signal between the internal receiver and the external headpiece transmitter, to reducing 'volume' at all frequencies, to changing the headpiece itself - the problem is still there. Maybe not as acute a problem as it was three weeks ago, but a problem nonetheless.

Maybe it's me, maybe it's my head that is the problem (too thick a skull? too delicate an auditory nerve?). Whatever causes this, one thing is undoubtedly true - the progress of the first few weeks has stalled a bit. I;ve even been having to ask people to repeat things for the first time in ages...not good.

Birds....

I am making such progress with the CI that I am trying hard not to get ahead of myself. My speech and language therapist at the RNTNE Hospital tells me not to run before I can walk, but the running ahead is fun. Now that I can hear conversation after one mapping session (one delayed courtesy of an illness for me that kept me confined to bed and off work), I've been consciously pressing the boundaries - listening to speech radio (BBC Radio 4 has the most wonderful afternoon plays), listening to spoken word recordings and following the text in a book and watching TV with the subtitles off, all with the intention of pushing me be less reliant on visual clues.

However, I have hit a small stumbling block in the mottled, feathered form of a bird regularly chirping outside my window at home. Now I know that birds are loud and that the human ear has come to, as it were, recess the sound; but the CI can't do that on it's own. At the moment I am trying to get to grips with a world in which the sound of a bird chirping can prevent me hearing other things and find a way of getting the brain to recess the sound. It'll come. I know it will. Until then, if anyone knows of a humane, efficient bird silencer, I am in the market for one...

Activation day

Just returned from activation and, I have to say, I am getting SO MUCH from the CI that I can't quite believe it...and all after four hours. Voices, trains, doors, levers, footsteps but, most important of all, the sound of my son Alex speaking to me. Four hours. Advanced Bionics, you have my profound admiration.

Blogging again soon, but for now it feels like the hope has returned.

Next day: ...and the wonders continue. I am hearing so much without any adjustment beyond the setup that it is quite unreal. I have just (and I can't quite believe it myself) had a meeting in the covered quadrangle of one of the main university buildings - a bustling meeting place if ever there was one - and held a perfectly good conversation with a colleague without lipreading on my part. I am astounded. The train journey to work was a little surreal (trains passing my train sounded quite eerie!) and the swish of cars reminded me of Michael Chorost's comment that, after his switch on, that was one of the things that impressed him.

Thanks for the blogs...

Becoming a CI user isn't easy, but it is an extraordinary experience. That's why I wanted to take time here to thank the many many CI users whose blogs, webpages and columns have been a personal inspiration thus far for me. People like Abbie Cranmer and Jennifer Thorpe have been trailblazers for many of us - telling of the experience of unilateral or bilateral implantation as it is, with humour but also with enormous honesty. Committing to a CI is as much an emotional journey as a physical one, and their openess and candour has been really important. To all of you guys blogging away about the experience of CI life, thanks. You're an inspiration.

Can we turn off the noise now?

Funny experience, post-op, sitting at home or at work with the worst case of tinnitus ever. It's not always like that, but when it's at full strength, it's pretty debilitating. I can usual switch off from it, but this is an order of magnitude worse than 'normal' (pre-implant) tinnitus.

Will anything change on activation day (6th January for me)? Or will the tinnitus stay this way? Could go either way. Oh, and the musical hallucinations have stayed. Or got worse.

Back at work

...but feeling still pretty knocked about, even after ten days of working from home and resting. Still, the silence (despite the tinnitus) is a rude sensation. I now hear nothing, but - remarkable thing the brain - I find myself kind of 'imputing' sounds. So much so that, if I didn't know better, I'd say that I 'heard' the doors of my London Underground train swish shut this morning. I am assuming that the brain is trying to be comforting. Now that I know I am waiting for activation on 6th January, I am getting used to the idea of a silent Christmas. Perhaps 'Silent Night' has never been more appropriate....

In...and out

What an experience. A five hour operation, and - as the picture suggests - I was feeling pretty rough immediately after the whole thing. The length of surgery meant that I had to stay overnight, which was unexpected - I'd planned on being home straight away. (The wretched picture is taken in dim light on the only thing I had to hand, a mobile phone! And yes I had pretty much just sat up after surgery that minute. Not the most appetising image or advertisement for surgery at the Royal National Throat Nose and Ear Hospital). As ever the staff and specialist clinicians were both professional and caring. Now all we need is for the aggravated tinnitus to stall for a bit, the pain to subside and the activation to take place...and then a slow and winding road to regaining some hearing or sense of sound from there.

Anyway the implant is in, two weeks to clinic appointment and a period of rest and recovery until then. No date yet for activation, but I'll take it one day at a time.

I've joined the CI tribe.

CI implantation date

It's happening. 20th November.

I'm afraid tickets are not available for the event...

C-Day?

Just back from a holiday in Brittany (picture to left) and, well, here at last is a sort of conclusive date for CI implantation surgery. It's, erm, sometime in September, or October...or maybe November.

Now I say this not to belittle or descry the good people at the RNTNE Hospital - they are terrific people, doing a fantastic job - but to point out something very important about the nature of health care, at least in Britain and in the National Health Service. The NHS is a remarkable institution, making health care available free at the point of use for all in this country now for 60 years; it is a great thing, cumbersome at times, and liable to being 'experimented upon' by politicians, but overall - as Sellar and Yeatman said - a "good thing".

But what it is not good at doing - and is actively trying to get better at - is managing patients as individuals and seeking their welfare first and exclusively. Trusts (the organisations that run our NHS) have to balance patient needs and patient interests on the one hand with resourcing issues on the other after all. Now it is evidently easier to do that by finding a slot for a CI operation rather than deciding on one with the patient. After all, put simply, skilled CI implantation surgeons are not that thick on the ground, whereas deaf people in need to a CI... The NHS is going to struggle to meet the aspiration our current crop of leaders have for 'personalised health care' and I wonder whether it isn't actually too much to ask of it.

No, I don't mean that it is too much to ask of the NHS to ensure that patients are involved in decisions about treatment and care, and no I don't mean that it is too much to ask that patients get to express a preference about where they are treated, when they are treated and by whom.

It is too much to ask, though, that the NHS should invariably offer the kind of open-ended commitment the government seems to be suggesting may possible - that I can have my CI implantation surgery on October 12th at 2.30pm, done by Professor X, possibly even under lights provided by the XYZ Corporation...

For all of those reasons, my reaction to the broad window timing for my own CI implantation is sympathetic and philosophical. After all, I am getting excellent care, the promise of a high quality team in the operation and implantation - and all at no cost.

The fuzzy future

Now this blog is about, well, deafness and CIs. Almost makes it seem as if I am obsessed with both to exlusion of all else but I do have another life, and that includes work in knowledge transfer. So reading some of the latest software technologies being developed for CIs and other neuroprosthetic devices is full of interest - not least from that KT perspective.

So many of the new developments consist of work to take advantage of the explosion of analysis in so-called 'fuzzy logic', the invention of mathematicians seeking to deal with decision rules and 'truth' where the precision of predicate logic is absent. The simple example of a temperature control device here should explain all.

What might this do for all sorts of prosthetic devices? Well, one obvious outcome is to enable a less 'mechanical' functioning of devices; but it should also make them more efficient.

Well here goes...

We have decided to commit to a CI as the only solution to the hearing loss. I knew this was the only sensible course, but I have wanted to ensure that we covered every possible cause. I'm not entirely sure we have done that, but I can't go on living in this limbo so a commitment to have a CI is a move forward.

Some people have been saying to me 'Why aren't you hungrier for the CI?' and the answer, I've come to realise, lies in my own (lack of) identification with being deaf.

I was deaf in one ear from the age of about 18 months until I began to lose hearing, slowly, in the right ear too from about 1999. From then until last year I was hearing pretty well (the odd bad day excepted) until that fateful mountain cable car. So while I have been hard of hearing for almost all of my life and mildly deaf for almost a decade, I have been certain that I am hearing person until this year.

In short a deaf identity still isn't my identity. I can't help feeling that because of this I have not been able to embrace a CI as a benefit but instead I still see it as a negation of my own 'real' identity as someone able (with a struggle) to hear, engage, interact.

What do I take away from this?

That becoming deaf is about a loss of identity as much as assuming one. That losing hearing is about losing confidence as much as (or even more than) losing touch with sound. That the heroic, but imperceptible, struggles to hear when you are hard of hearing but denying it are all the more ridiculous and pathetic in retrospect.

On that last point, I am now amazed to realise the number of devious ways by which I actually managed for years with reduced hearing and all sorts of trivial and not so trivial things are coming into sharper relief. The fact that I used to skip lectures at Cambridge because certain lecturers were 'not helpful' when what I really meant was 'the lecturer mumbled'; the fact that, when I became a lecturer myself, I talked too much and listened too little (fill the time with your voice and you don't have to strain to listen for the responses of students); the fact that I have always fought shy of social events, meetings, even the odd get-together.

What I am beginning to realise is just how far deafness is not some new condition but, paradoxically, one of the most essential elements of me, Mark. I still feel unsure whether, on those all too frequent occasions we are asked to declare - for 'diversity monitoring' purposes - whether we are disabled, I really should be ticking that box...

Bit of a surprise to learn all of that at this age.

The long and winding road...

So here I am, after several months, and still waiting for a confirmed diagnosis and - after that - a commitment to a CI if that is the best solution.

On Friday I am getting a new hearing aid since the one I have, I am told, is 'totally inappropriate for you' (thanks!) and on 19th March I am having....a grommet inserted. Yes, after an initial diagnosis of barotrauma in August was rejected, we've been going toward the CI highway, only to pull back over to the lane marked for the middle ear pressure 'B' road.

Meanwhile, I am gearing muyself up to - at some point - get on with a CI if all else fails. I have to admit that the pressure waves in the ear that were, until very recently, slight affairs and happened once a week (if that) have now become MUCH more frequent (40-50 a day), the shape of the ear canal has changed and other slight changes consistent with pressure effects seem to suggest that investigating it makes sense. But now? After all this time?

On a positive note, my University has been very helpful in trying to accommodate my new found disability. I'll be using an FM receiver device for use with an input shoe. In addition, I'll get speech-writing assistance (no, not as in George Stephanopolous or Alistair Campbell) and continued support from colleagues. Up to me, then, to ensure that I keep delivering the goods.

Changing again

The character of the hearing loss is changing - again. Now the sounds of other voices are a little more distinct, but everything sounds muffled, tinny and as if my head were in a barrel. All characteristic, I see, of hearing loss related to eustachian tube dysfunction...I wonder...

Meanwhile, my next full clinic appointment (8th Feb) remains a bit of a mystery. I know who I am meeting, but not what they do or why they are meeting me. The explosion of activity in December has abated, for now. And I still don't have sight of the MRI scan.

Disheartened? A little.

Remarkable moments in film...

People in the UK won't have seen (certainly I haven't) an HBO distributed film and winner of a Sundance Film Festival award, the remarkable film by Irene Taylor Brodksy entitled 'Hear and Now'. The link here gives access to a trailer as well as press comment, interviews with Irene and other material.

Christmas and the MRI scan

Christmas - for that is what it is (not 'the holiday', not 'the season', not even 'yuletide') - was a happy event as ever. Watching Alex and his cousins rushing to the front of All Saints Church in Wokingham during the Christmas Eve family carol service reminded me just how important to a non-believer like me is the Christian festival of Christmas. The unaffected joy of children at hearing the familiar Christmas story being retold has a strong emotional power. John Betjeman's poem 'Christmas' (reproduced here and, of course, in Betjemen's Collected Poems) captures some of the strange feeling of wonder we non-Christians have at the significance and poetic beauty of the event being marked; that "No love that in a family dwells, No carolling in frosty air, Nor all the steeple-shaking bells Can with this single Truth compare -That God was man in Palestine And lives today in Bread and Wine".

We opened the 'tissued fripperies' as usual on Christmas Day morning and enjoyed ourselves hugely - albeit my being deaf proved a handicap to fully engaging in a family Christmas. Relatives took the time to speak slowly, asked about what was happening to me...and I have lost count of the number of thoughtful cards wishing me 'a better 2008' I have received. Whether or not Christmas is a Christian celebration hijacked by we near pagans for our own pleasure or not, it is undeniable that every year people seem, at this time of the year, to grow a little kinder, a little fonder and a little more sentimental.

I eventually got my MRI scan today, 29th December, at the Royal Free Hospital in Hampstead (US readers should note that all NHS hospitals are 'free', but the names of the nineteenth century foundations remain, so that the Royal Free Hospital founded in 1828 is a remaining monument to Victorian philanthropy made even better by state funding for free healthcare) . I sneaked a look at the scans, but made nothing of them, except that there seemed to be something very odd happening on one side of the head...more on that when I hear the diagnostic from the evidence.

Happy New Year for 2008.

KT and neuroprosthetics

Unlikely as it seems my daily role in the University (directing across the institution all our work in knowledge transfer, through all aspects of commercialisation to spin-out and by every other conceivable route) seems to be benefitting from a closer acquaintance with the world of neuroprosthetics. Not only is my University's own Biomodelling Group doing fantastic work on deep brain modelling, which now actually means something real to me, but in casting around for ideas on how such work can more readily reach a market I've been impressed with the work of other UK colleagues looking for innovative ways of quickly taking this kind of technology from the lab to healthcare. The Strathclyde Institute of Medical Devices, for instance, doesn't leave the business of commercialisation via technology partnering to people like me - generalist knowledge transfer people with a broad understanding of transfer protocols, but for whom the industry and context would be new. Their approach appears to be to ensure that throughout the unit, whether dealing with studentships, small business liason or licensing, scientists with a commercial and sector background lead the process.

There is a trend in knowledge transfer toward greater specialisation, and that is almost certainly a part of the story in the UK academic neuroprosthetic knowledge transfer arena. More than that, however, there is a need to cope with the inherent uncertainty in the technological trajectory. The reality is that the speed of development in these technologies now depends upon work in nanotechnology (possibly, one day, even bionano), microelectronics, brain imaging, brain chemistry, neuropathology, computer science and materials science, which progress without a thought to that particular technological trajectory. Specialist knowledge transfer people will know how far firms are able now to capitalise upon the coincident developments in each of these areas. For all of us awaiting the development of more effective neuroprosthetic devices, we need their skills to lead that transfer from the lab to the operating theatre and beyond.

How not to report on cochlear implants

Those of you who admire the ability of the press to miss the mark so comprehensively on occasion might be amused by the report in the (UK) Mirror newspaper about young Joshua Alexander at http://www.mirror.co.uk/news/topstories/2007/12/22/joshua-hears-after-bionic-op-89520-20262500/, in which I count five gloriously inaccurate statements about CIs. Have I missed any?

Friday came and went...

The assessment panel yesterday wasn't an assessment panel so much as a funny old meeting. In effect the fact that I get the MRI scan (I hear by letter today) on 29th December has kind of screwed up the timetable. My consultant - a thorough and professional man - suggested he'd rather not give a concrete and definitive picture until we have that - but suffice it to say the rest of the messages given were all consistent with the view that widespread cochlear hair cell death via SNHL has happened, and the only option now is the CI - confirmation in detail, as it were, of what we knew. Details were that the bloods were all normal - although some sign of an autoimmunity factor, but not specific. I asked if AIED was an option and heard, quite properly, this is so rare we'd have to see a much higher and specific count for that to be likely at all: frankly, he thought not. The CT scan and the other medical tests all suggested nothing other than cochlear cell death is happening down there, but clearly we want to see that MRI. Other tests (speech discrimination etc) that are intended as threshold tests - i.e. are you deaf enough, and in the 'right way' for a CI? (i.e. would you benefit?). They were all 'positive' (i.e. the scores were lousy).

We talked about the recent 'supercharged' hearing in which I'd been able to hear things I'd not here since BEFORE July (like the beep of the door entry card reader at the office, so faint most people rarely notice it; or the key clicks made when I text Jane on my mobile phone....). I am pretty sure it is not me imagining it - I've been hard on myself on that - and I am sure it did happen (6-7 days of 'super hearing', albeit with only a modest improvement in speech discrimination). We talked about it, he said such variability was 'unusual' (I suspect doctor code for 'You're fooling yourself, son') but wanted to look at it. He immediately did the (only) test for patulous eustachian tube in case it had been missed earlier (which had been running through my mind too) but seemed to conclude not much sign of that. However he did want to get, he said, a better baseline of at all possible since the variability had cut across tests.

So he proposed, between now and getting the MRI done having a high dose steroid course intravenously, watch what happens and see if the improvement looks greater than one might expect (in that you'd normally expect very little change). This is thorough and considerate. He even said that he hoped the steroid course would have an effect, if only a marginal one, a benefit for Christmas if nothing else. Jane regards all of this as him just humouring me and being considerate, but I think he's right about trying to see if the steroids get us any improvement since, if they do a markedly good job (better than last week's 'super hearing spell') we may need to check that something else isn't going on.

For now, though I'm through most of the hurdles for the CI and would prefer that to nothing (or regular intratympanic injections even if that were possible!) barring the MRI. It appears to be only the timing of that in the sequence that is now holding us up...that and the small matter of NHS funding for the process.I'll hold over the blogging for the rest of Christmas and the New Year. A very Merry Christmas to you all, and a Happy New Year for 2008.

Strange things are happening...

I am trying to remember that medicine is a rational discipline, and that noting small changes is for the birds as far as diagnosis is concerned, but...

I can't quite understand why or how but over the last few days (4 or 5) I have begun to hear sounds again, admittedly with the hearing aid (but I needed that before too), that I haven't heard in a long long time.

Sounds like: the faint beep of the entry door to my office building as it accepts my entry card; the sound of my keys jingling in the door; the sound of the Tube train doors slowly closing, and that awful 'beeping' noise they make before they do...the point is that all of those sounds (and a whole lot more) were simply off limits since July and now, unbelievably, they are back. Moreover while I can't work out words from other voices I CAN hear people speaking again - and have even 'overheard' a conversation taking place several seats away on a rattling, noisy Tube train.

My own voice now sounds to me almost normal (the only difference from pre-July days is that it sounds like I have a couple of paper cups over the ear). The sounds I still can't hear fully in my own voice are now just 's' and 'sh', but I can hear enough even of them. Other voices remain a problem and the tinnitus is pretty insistent.

Now, here is the problem. Do I take these things seriously? Is there a different baseline here? Is there (I hardly dare mention the thought) the possibility that something else is going on here other than - or alongside - SNHL?

The team at the RNTNE Hospital have been wonderful at aiming first to determine absolutely the cause of the loss. I'm still pretty sure they will conclude hair cell loss from a viral infection of unknown origin, but if there is the POSSIBILITY that the hearing loss could come from anything else I want us to dig for the answer. After all, a CI is a big deal - time, expense, irreversibility. I'm not getting my hopes up, but things HAVE changed.