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.

Friday beckons

Friday is the day of the panel meeting at which we will hear the clinical - at least - view on whether a CI is the best way forward, and advice on how we make the decision to commit to that.

We are still a long way from implantation of course. There is an outstanding MRI scan to complete, a meeting with a clinical psychologist, and other members of the team to see. There is the likelihood that I'll have some time to think about the decision and then, as faras NHS funding is concerned, there are funding decisions to be made.

However I can't speak highly enough of the Cochlear Implant Programme team at RNTNE Hospital. Knowing how long this has been left unattended by unnamed ENT Department and friends, they have done their very best to complete a full investigation as quickly as possible.

During last Thursday's appointment at the RNTNE Hospital we managed to catch up a good deal of the time. I had, in something of a rush (brilliantly coordinated by the team),

- an ABR test (to ensure nerve function is good enough and to confirm cochlea hair cell death)

- and autoimmune inner ear disease blood test and three other blood tests to identify (rule out) other causes

- a CT scan (with an MRI scan to come)

- four speech discrimination tests

- four online psychological profiles and 'expectations assessments'

- a face-to-face psychological profile (first of several I think)

All of which, together with three previous audiology tests (pure tone, pressure and one other I can't recall), a written psychological profile, a team/panel meeting and an information session, has covered just about all that needs to be covered before we begin the move into the 'informed decision' phase.

What happens now is that after another test (0930 on 21st December) and a trial of an Oticon Sprint 3 hearing aid - to rule out its utility for me [I think already that much is clear, but for the process we have to try it] I will have a meeting with the team and a panel decision will be made.

Off to Wiltshire

Off to Wiltshire tomorrow to see my parents for my mother's birthday. (They live in the beautiful town of Bradford-on-Avon, where I grew up). Naturally she's concerned about her 'little boy' - all of 46 years old - and his impending CI journey. But we won't let it dominate our thoughts. A friend emailed recently saying 'don't focus on the distant future, stay with the task in hand' and she is right, as is everyone else saying the same thing. There are moments when this doesn't seem such a big deal. Equally there are moments when it does feel like a choice between different forms of defeat...

Small steps.