"You Can See Through Those Glasses?!" OR What the Hell is Degenerative Myopia?

Before I get into all of that, I just need to tell you that this is all Neil’s fault (not the sight loss, just this website). He’s my new expert guide (literally) into the world of white canes for those of us visually impaired folks who’d like to get out by themselves every Wednesday afternoon – so a cane trainer (if you will), or as I like to think of him, the Cane Master (which admittedly sounds a bit dodgy, but honestly, I now can’t get the idea out of my head). To protect his identity (and more importantly his association with me) Neil is not his real name, although I did think it was his name the first two times we met (don’t tell him that). This, of course leads me to the undeniable truth that I can no longer place a name to a new face (nor the other way round). So, Neil suggested (after I’d barraged him with the many tales of my new white cane usage) that I should write something about my experiences because it might interest/help other people in my situation. In fact, he only mentioned it twice, but because I need very little encouragement to talk, here it is …

So, What's Up with You?

"You can see through those glasses?!” is a question I am often asked by adult people who, for the first time, notice me wearing my really thickly-lensed spectacles. (I normally wear contact lenses, partly because I don’t want to be harassed by that damn question). My answer is usually, “No, can’t see a thing. My optician just has a sick sense of humour.” I am, of course, taking the p-ss. I actually found them on a bus.

 

The follow-up question is often, “Can I try them on then?” As if trying on my glasses (my very, very expensive glasses with glass specially excavated and imported from the glass mines

of Kathmandu) will somehow convince them that I do indeed have very bad sight and wasn’t simply wearing them as a joke. On the rare opportunity that I allow this, the response from them is always, “Bloody Hell, I can’t see anything through these”. Well, you wouldn’t be able to, would you? You daft s-d. As my Yorkshire grandmother would say. 

My eye condition doesn’t really have a definitive one-size-fits-all name, and (as I’ve come to realise) is one big yawn to most eye specialists – i.e., they don’t appear to be that interested in it, cos there’s nowt (using another Yorkshire-ism) that can be done (and yes, I did have an eye specialist actually yawn all the way through a recent eye exam – although to be fair he could have had a bad night). Even so, according to NICE (the sometimes-not-so-nice National Institute for Clinical Excellence) 3% of the UK population have it – which is approximately 200,000 people, and what’s more concerning is that it’s increasing in prevalence – and nobody knows why... spooky.

 

So, what should I call it? Well, unlike those more common or garden degenerative eye conditions with the fancy Latin names, such as Retinitis Pigmentosa or Eyeballus Deteriatus (I made the second one up) – this one has many names depending on what a Google search comes up with on a Tuesday lunchtime. So, there’s Degenerative Myopia, (or Myopic Degeneration – switch it around depending on how you feel on the day), Progressive Myopia (the forward-thinking persons’ myopia), Atrophic Myopic Maculopathy (now you’re just messing with me), Pathological Myopia (the serial killer of all eye conditions), and Extremely Stretched Eyeball Syndrome (I made the last one up).

Problem is (and perhaps the reason it doesn’t have a definitive name), is that it's a complex eye condition, made up of lots of different scary shit (sorry… complications). But to bring it back to basics, it happens as a result of extreme myopia (short-sightedness) - or if you want to get technical, anyone who has a glasses prescription of -6.00 dioptres or above is classed as at potential risk. My prescription is -22.00 dioptres, which is pretty high, but not the worst (yes, there are people out there with more severe short-sightedness than me, and I know they exist because the internet tells me so, although I’m yet to meet one in person - or bump into them – blind joke). Anyway, the extreme myopia causes axial elongation (stretching of the eyeball so it becomes rugby-ball shaped rather than football-ball shaped), and as a consequence of that you end up with chorioretinal thinning  - your retina becomes thin and stretched, “like butter scraped over too much bread," (sorry, couldn’t resist the Bilbo Baggins quote). It’s usually hereditary (although my parents had 20:20 vision), there’s no cure and (I think it’s fair to say) nobody really knows why it gets this bad. No amount of exercise or different combinations of foods (a carrot and spinach smoothie before bedtime for example) will make the slightest bit of difference. It’s also impervious to religion, Hopi Ear Candling, fennel seed eye rinses, nor a bucket full of chocolate buttons. Although to be fair, I've only tried the last one.

 

So, which of the myriad complications do I have? Well, according to a recent letter from my ophthalmologist (not the yawning one), I get to have all of them! I did ask one eye specialist some time back if having all the complications meant that I win and get to have a prize. He looked back at me in confusion (and if I’m honest, also a little worriedly), since while he was obviously an expert in eyes, he evidently had no sense of humour.

So, in a list as long as my eyeball, this is what’s going on. The first (and probably scariest) is retinal detachment. And yes, I’ve had one of those in each eye (that’s a score of 500 points in Myopic Top Trumps!) and the subsequent operations – more on that later (bet you can’t wait). But, put simply, your retina becomes so stretched that it begins to pull away from the back of your eye. This allows fluid to seep under it, essentially lifting it away and starving it of oxygen – and frankly if you don’t get emergency treatment very quickly – you’re stuffed. See how eating carrot cake every day (while delicious) isn’t going to help?

NOTE: I have no objection to anyone who wants to send me carrot cake … just in case.

Macular Spectacular 

The second biggest complication is damage to the macular (which is the central part of the retina at the back of your eye). It’s responsible for all of our central vision, including colour perception and seeing any kind of detail – including people’s faces. We use it for watching the telly, reading, using Facebook, texting, peeking out the window to see what the neighbour’s doing getting into some strange bloke’s car… etc, etc. But it’s only tiny, about 5mm across, which means that the rest of the retina (while important) is rubbish for seeing – so, if the macular gets damaged or obscured in any way, you’re also stuffed – but you probably don’t need to call an ambulance. Because I like to have a bit of everything (a smorgasbord of complications if you like), I have a lamella macula hole in my right eye plus macular scarring and choroidal neovascularization (when new blood vessels grow into the damaged part of the macular). This kind of hole doesn’t penetrate all the way through the retina (a cross-section of this part of my eye looks a bit like a mid-Atlantic deep sea ocean trench during a particularly bad undersea storm - see below).

macular hole.jpg

No, not the Aurora Borealis, 

this is in fact a Lamella Macular Hole in an actual human being ...

But it doesn’t require surgery – at least not yet. I also have (are you keeping up?) ‘extensive bilateral chorioretinal scarring due to high myopia’. All of that medical jargon means that due to being ridiculously short sighted, I have large areas of pigmentation change and scarring on the whole surface of both my retinas. If that’s hard to picture, then think about this: imagine there’s just been a huge battle using nuclear weapons on the surface of Mars and you’re looking down at the planet from space at the aftermath of the battle. Does that help? It’s the first thing I thought about when I saw the photographs of my retinas. But that’s probably just me.

 

Finally, on my list of retinal complications is ‘bilateral posterior staphylomata.’ Sounds a bit religious, but isn’t. It has something to do with the elongation of both of my eyes, the consequences of which cause an irregular configuration of the back of the eye (or the posterior pole, if you want to be posh). Don’t quote me on this though, because in reality I’m just as baffled as you are.

Wait, there's more?

Um, yes sorry about that. There is a bit more. However, (just for a change of scenery) this time we're going to the front of the eye rather than the back. About ten years ago the first signs of cataracts appeared in both of the lenses in my eyes. These are subcapsular (i.e., they begin near the back of each lens, right in the path of any light - bl--dy typical!) and are another complication (as if I needed it) of extreme short-sightedness. Fortunately, they're quite slow growing, which means it takes time for them to have any meaningful impact on your sight - but that impact, ten years down the line, is now quite noticeable for me. I also have Photophobia (not an aversion to looking at photographs of other people's kids - although I do have that too), depth perception problems (who put that damn step there?!), floaters (no, not the kind you find in the toilet!) double vision (I didn't know you had a twin?), night blindness (enough already!) and Charles Bonnet Syndrome (this one'll really blow your mind). Which brings me neatly on to the next section in which I will try to explain how all of this fun stuff effects my day to day seeing.

As an afterthought, I should mention that I don't have Glaucoma - another potential side effect of degenerative myopia. But wait! I hear you cry. You said you had ALL the complicatons! - I know I did. I lied ...

Now you can read: "That's Not the Cat, it's a Black Bin Bag" OR Seeing is Not Always Believing