Dr Google

Come on, admit it – we’ve all done it.  You know the kind of thing I’m talking about… For example, you notice a pain in your foot and after a few days of it niggling away in the background you head to Google and type in the seemingly benign phrase, ‘pain in left foot’.  A few clicks later, you’ve diagnosed yourself with club foot, a touch of gout, fallen arches, frostbite in the toes, arthritis in the ankle, and severe gangrene which is so far advanced that the only treatment available to you is amputation above the knee.  You hobble to the kitchen, wincing at each step whilst trying not to put any weight on your doomed limb, make a cup of tea and return to Google.  By this point your lower lip is trembling so much that you can’t even drink the tea.  You stare at the screen with wide eyes and a white face as you skim through forums in a desperate search for something positive, but discover nothing but horror stories fit to rival ‘Frankenstein’.

Such was the case when I received a copy of a letter from my original consultant to my GP way back in approximately August 2014 which contained the phrase ‘PVR’.  They say that curiosity killed the cat, and quite frankly it’s extremely fortunate that I’m not feline.  “What’s PVR?”, I wondered, as I fired up my ancient laptop and headed for Google.  Once it creaked into life, I found that I rapidly regretted this course of action as I read that PVR (or proliferative retinopathy) was a complication of retinal detachment, occurring in approximately 8-10%  of patients.  Google calmly informed me that further surgery could be undertaken to treat the PVR and reattach the retina, but warned darkly that the final visual outcome was very poor.  Just to torture myself, I read on and learnt that PVR is the most common cause of failure in retinal reattachment surgery.  Of course, inevitably, at this point Mr Pip made an appearance and took great delight in prodding and poking me, quietly laughing at my discomfort as my mood plummeted and my fears for the future rocketed.  (Have a read of The Unwelcome Visitations of Mr Pip, if you haven’t had the (dis)pleasure of meeting this exceedingly nasty fellow.)  Meanwhile, my sister, who has that sisterly sixth sense of knowing when something isn’t quite right, discovered what I’d been up to and banned me from googling any more information to do with my eyes, appointing herself as my online research assistant instead.

At my next hospital appointment, I tentatively asked my consultant about PVR and confessed to having looked it up.  He gave me a telling-off, albeit a gentle one, and pointed out that those medical letters are written from one doctor to another and aren’t really meant for the patient.  It was a fair point, but when the letters are copied to the patient, they’re somewhat difficult to ignore!  Fast-forward a few months to my first appointment at Moorfields, and I received a similar response from the nice Irish nurse as she shook her head, rolled her eyes and sighed, “Oh no, not Dr Google!”.

I have many faults, but as stupidity isn’t one of them you’d think I’d have learnt my lesson from this.  Apparently not.  The next time I saw fit to consult Dr Google was after my most recent hospital appointment back with my original consultant at the Royal Surrey.  As always, a copy of his letter to my GP arrived on my doormat a few days later.  Upon reading, ‘Anterior segment examination revealed a right afferent pupillary defect’, I was a little unsure but not overly worried, assuming that this simply referred the fact that my right pupil no longer works properly.  For months after my last surgery it was permanently dilated, making bright lights a complete nightmare to deal with.  Over time, it gradually returned to something similar to its original size, and many months ago I noticed that it no longer worked properly at all – i.e. when in low light, it no longer seems to dilate as the other one does.  As Moorfields had already told me that the permanent dilation was probably a result of all the laser surgery and hadn’t mentioned anything in relation to my pupil at the numerous follow-up appointments, I assumed it was nothing to worry about in the grand scheme of my spectacularly buggered up eyes.  But that phrase in the letter made me want to just double-check.

I typed into Google, ‘afferent pupillary defect’, and settled back to read the results.  In horror, I skimmed phrases such as ‘lesion of the optic nerve’, ‘severe retinal disease’, ‘multiple schlerosis’, and other sentences which didn’t serve to help matters, such as: ‘Afferent pupillary defect can be an ominous exam finding’.  “But, but, but”, I stuttered to myself, “Surely it’s just my dodgy pupil?!  But why didn’t he say anything about it at the time so that I could have checked it was nothing to worry about?”  So I continued to read and click and worry a little bit, until I found the confirmation I needed, that ‘a patient with a history of total retinal detachment in one eye would manifest a relative afferent pupillary defect’.  Once I’d found the same information on a few reputable sites, I began to calm down as I muttered a few choice expletives at both Dr Google and the offending hospital letter.

Obviously, my curiosity is such that I’m unlikely to simply stop looking things up and hunting around for information.  But when I’m thinking calmly and logically I’m very much aware of the necessity to check reputable sites and also to ask the consultant about anything I’m not sure of.  I tend to use sites such as Moorfields Eye Hospital, the NHS, RNIB, Fight for Sight, and the Thomas Pocklington Trust.  I occasionally also delve into research articles, although these can often be something of a challenge to understand completely.  They can also be massively depressing at times.   I guess the moral of the story is ‘consult Dr Google with caution.’

Eye to Eye 2017: to walk, or not to walk; that is the question…

When my sister and I took part in the 14-mile sponsored walk from Moorfields Eye Hospital to the London Eye back in March 2016, to raise money for Moorfields Eye Charity, we told ourselves we’d only be doing it once and so went all-out to raise as much dosh as was possible without resorting to bank robbery.  Our plan of basically harassing family, friends, and work colleagues into sponsoring us appeared to work pretty well.  Thanks to our many generous supporters we raised a total of £1,656 plus £270 in gift aid.  We’d been so nervous about whether or not we’d actually manage to trudge the 14 miles without either collapsing in exhaustion or getting hopelessly lost in the maze-like streets of London that we hadn’t contemplated the possibility that we might actually enjoy the whole experience.  It was therefore a pleasant surprise to find that we had a wonderful time and thoroughly enjoyed the entire day (apart from the GIANT blister and aching legs at the end).  The weather was chilly but bright and sunny with clear blue skies; we saw interesting parts of London which we hadn’t even known existed; and we met some lovely people in the form of fellow walkers.  It was also extremely satisfying being part of a large organised event which raised awareness of Moorfields and the fantastic work they do (we were stopped by a few curious people as we trudged along, who wanted to know which eye we were walking from and to).

So when Moorfields Eye Charity began advertising Eye to Eye 2017, we thought, “What the heck – let’s go for it again!”.  The main reason for our initial hesitation was that we didn’t want to have to ask the same people to sponsor us again, and we doubted that we’d manage to raise as much money as we did the first time around.  However, the reality of the situation is that money is still needed to carry out research into treatments to save sight.  The RNIB has listed some interesting statistics on its website (http://www.rnib.org.uk/knowledge-and-research-hub/key-information-and-statistics), including the following facts:

There are almost two million people in the UK living with sight loss.  This figure includes those that have uncorrected refractive error or cataract that may be reversed.  This figure also includes around 360,000 people registered as blind or partially sighted in the UK, who have severe and irreversible sight loss.  The number of people in the UK with sight loss is set to increase in line with population ageing: by 2050 the number of people with sight loss in the UK could be nearly four million.

In addition to these facts and from a purely selfish point of view, my partially detached right retina is still being held in place by silicone oil which ideally needs to be removed at some point.  I have extremely poor vision in that eye as well as being constantly worried about my left eye due to the previous two large tears in that retina, the lattice degeneration, a bunch of floaters, and a cataract.  The prospect of my visual future both terrifies and depresses me at times.  In the absence of a miracle, I’d quite like a magic solution to be discovered via scientific research as soon as possible.  As Moorfields is one of the world’s leading eye hospital, providing expertise in research, I’m pretty much counting on them to come up with the goods.

So that’s why we’ll be taking part in Eye to Eye 2017, only this time we’re participating as a team… the ‘RD Ramblers’.  Three of our team members are people we met on the walk back in March, whom we’ve kept in touch with.  All of us have been affected by retinal detachment, whether it’s as a patient or someone close to us.  For more information about our team effort, and if you’d like to donate to this very worthy cause, please visit: https://www.justgiving.com/fundraising/rd-ramblers.  Of course, if we don’t get many donations, we can always go for balaclava fittings… any volunteers to drive the getaway car..?  😉

Headlight horror

The Friday before the clocks went back, my boss caught me just as I was about to leg it for freedom and announced, “We need to talk about your hours.”  “Do we?” I asked, my heart sinking as I remembered the last lot of discussions about my hours in conjunction with Occupational Health which had been both extremely unhelpful and incredibly stressful.  “The clocks go back at the weekend”, my boss informed me.  I suppressed the urge to snap that I was fully aware of this fact as I’d spent the past few weeks dreading the prospect of driving home in the dark with tired and aching eyes after a full day spent staring at the ruddy computer screen.  However, he seemed to realise this as he suggested, “Why don’t you just come in at 8 and leave at 4?”  So that was that  – the decision was made.

Getting up an hour earlier has been no problem for me due to my insomniac tendencies.  Travelling to work earlier has brought the bonus of less traffic, no queues getting onto campus, and unlimited choice in selecting a parking space (a rare treat indeed).  Similarly, leaving earlier has meant no queues getting off campus, less traffic on the way home and, most importantly of all, not having to summon up extra amounts of energy from depleted supplies in straining my weary eyes in the dark.  The concentration required for night-driving is so intense that frequently at the end of a journey I will physically have to force my shoulders down to their correct position below my ears and massage my forehead in an effort to relieve some of the tightness before reaching for my soothing eye drops.

Night-driving has been far more difficult since my eye problems began, and I know that this is an issue which many of my eye buddies share.  I will now only drive short distances in the dark and I minimise night-driving wherever possible.  The night vision in my right eye is considerably reduced.  Obviously this is partly a result of the damage to my retina caused by all the detachments, as well as the silicone oil in it which causes everything to appear very blurred – a bit like when you open your eyes underwater.  My three retinectomies and 360 degree laser surgery also means that I’ve lost a fair amount of peripheral vision, which makes things more difficult anyway but this problem is amplified in the dark.  The retina contains two types of photoreceptors – rods and cones.  The rod cells are concentrated at the outer edges of the retina and are used in peripheral vision as well as being almost entirely responsible for night vision.  (In case you’re wondering, the cones are most densely packed in the centre of the retina and these are responsible for our central vision and colour vision.)  As the lower outer edge of my retina has been physically trimmed away and the rest of the edge has been rendered useless due to the 360 degree laser surgery, I’m guessing that this is the reason for my appalling night vision in that eye.  To get a very rough idea of what my vision is like in the dark, have a look at the final photo in my blog post, ‘Do you see what I see?’.  Bear in mind that this represents my vision on a relatively well-lit road.  If I close my ‘good’ eye on an unlit road, I can barely make out the car directly in front of me – it just becomes a blurry smudge along with everything else.  (Note: I only indulge in this particular visual experiment when my car is stationary!)

It’s not so bad driving on well-lit roads as apart from the added bonus of more light, this also means less likelihood of drivers cruising along with their headlights on full-beam.  Narrow, winding, unlit country lanes are a different story, as around each bend lurks the danger of a vehicle hurtling towards me with its headlights dazzling my remaining vision.  Such encounters are usually greeted by me with an explosion of expletives (depending, of course, on whether or not I have any passengers in the car at the time).  Other irritations include cars with misaligned headlights, tailgaters, those horrible extra-bright dazzling headlights, bicycles with no lights, pedestrians walking along the road wearing dark clothes, and the well-intentioned but somewhat painful flash of the headlights meant as a gesture of thanks but received by myself like a slap in the face.

The Highway Code actually states, “Only flash your headlights to let other road users know that you are there.  Do not flash your headlights to convey any other message or intimidate other road users.”  Unfortunately, most drivers ignore this rule.  Many’s the time I’ve stopped behind a parked car on my side of the road to let an oncoming  stream of traffic pass, muttering to myself, “Please don’t flash your lights, please don’t flash your lights, don’t flash, don’t flash, aaagh, you ******!” in response to the inevitable.  I don’t flash my lights to say thank you to other drivers, although I must admit that I have been guilty of this in the past.  Instead, I just raise a hand, somehow hoping that the other driver will know that I’ve thanked them, secure in the knowledge that if that driver has had multiple surgeries for retinal detachments, they’ll be silently thanking me in return.

Of course, despite all this, I’m hugely thankful that the vision in my left eye is still good enough to allow me to drive.  If I had to give up driving, I’d have to move house as the public transport where I live is both appalling and ridiculously expensive.  So I’ll continue to motor on sensibly, whilst muttering and swearing at all the road hogs out there and looking forward to 21 December, after which date the hours of daylight will very slowly but surely start to increase once more.

Note: If any sciencey people out there could possibly let me know whether I’m correct in my assumption about the rods and night vision, it would be much appreciated. 

Marching for Moorfields: the results!

No, I’m not referring to the GIANT blister I acquired as a consequence of our 14-mile sponsored walk from Moorfields Eye Hospital to the London Eye back in March, but rather the REALLY IMPORTANT results.  For example…

• 64 generous supporters sponsored my sister and I in our trek across London to raise money for sight-saving research.  Huge thanks to everyone who supported us – I can’t tell you how much we appreciated it!  🙂
• This enabled us to raise a total of £1,656, plus £270 in Gift Aid.
• We beat our final target of £1,400 (£100 per mile) by 18%.
• Our original target was £250, so it just goes to show what can be achieved when you go all-out in harassing friends, family, and work colleagues for sponsorship for a worthy cause.
• Over 770 people took part in Eye to Eye 2016.
• The whole event raised over £155,000.
• All of the money raised will fund pioneering research at Moorfields Eye Hospital and the UCL Institute of Ophthalmology.

Moorfields Eye Charity has given me a few examples of some of the projects which the fundraising has supported, as follows:

• A PhD research project, looking at visual crowding in congenital nystagmus (involuntary eye movement), bringing together multidisciplinary expertise from the UCL experimental psychology department and Richard Desmond Children’s Eye Centre.
• A project aimed at delivering the world’s first keratoconus genome-wide association study to identify genetic risk factors for developing the disease.  This project will utilise a bank of genetic data which has been collected at Moorfields over a number of years and holds the potential to make a substantial step forward in understanding this condition, enabling Moorfields to identify people at risk of it and intervene earlier to preserve their sight.
• A small proof of principle study to develop a smartphone app which will demonstrate, through interactive 3D videos, results of eye examinations so that individuals can ‘show’ their family, carers and friends what it is like to have their type of sight loss.

The charity will have another grants round in due course, at which grants will be awarded for more research and also for some diagnostic equipment used to take cellular images of the front of the eye.  Stand by for further updates, and in the meantime please start stashing your spare cash as we’re planning on taking part in Eye to Eye 2017… (yikes!)  😮