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.

Grommet without the Wallace...

Not quite Wallace and Gromit [sic]. I have had a grommet insertion to see if the pressure problem in the ear is solved or at least reduced by means of it, thereby making the hearing loss manageable with ONLY a hearing aid. A long shot but worth trying. So far, so good - or at least, so far so unusual. The result has been that the vascular movement in the ear has become much more bothersome, while behind it (I think) I can hear a bit more. The problem is that the vascular movement (a rushing, pulsing sound) is so strong that it is difficult to hear past it with the hearing I have left even with the hearing aid at full blast.

Fortunately (I mention this since aficionados of Wallace and Gromit will be wondering) there is no Wensleydale involved....

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.

No news is....annoying, actually

Is no news ever good news?

I haven't heard anything about the 29th December MRI scan yet and I'm a little concerned. After all, what I saw on the scan through the door left open by the radiographer looked to me pretty unusual and consistent with something like an AVM or an acoustic neuroma. Could be wrong - hope I am since it would complicate matters and, if a large AN and surgery were the route, would probably rule out a CI and getting any hearing back.

Meanwhile on with life. I've been keeping a hearing diary, and the variability of my (subjectuvely evaluated) hearing and tinnitus looks [and felt] enormous between 21st December and 9th January. It's shown above right. The scores on the vertical scale range are set to measure the relative quality of hearing and tinnutus against the best of both since July 2007.

The best way to do this would be to have some relatively stable metric based upon a standard test (a set speech discrimination test, for example) but we didnlt have one available. As a result, this is more a record of how the hearing seemed to me over the whole period - but it does show the range of hearing and tinnitus experienced.