UK Keratoconus Self-Help and Support Association

I am 26 years old, male and have had keratoconus for just over 3 years. My left eye is worse than my right eye. I was given glasses by the optician, but never wore them. I drive and generally it dosent bother me. if i squint my right eye it comes into focus. Lights and light sources look like funny shapes to me. the optician gave me these readings :


Right Dist 6/24 - 1.25 / + 1.75 x 160 6/5-2 N5
Left Dist 6/30 - 1.25 / + 3,00 x25 6/7.5 N5

It also said keratometry reveals distorted mires. I dont know how bad this is? or just mild? i cant wear contacts, glasses dont really help as the halos and distortion around light sources is still there. What options are there? Is this mild or severe astigmatism/keratoconus?

Hi Tom and welcome to the forum!
I hope someone more expert than me will come along and tell you more about what your readings mean. Though I'm not sure you're legal to drive with 6/24 and 6/30 if you're not wearing any correction. You say you can't wear contact lenses - can you say a bit more about that? There's now a variety of different lens types for KC so if you've only tried corneal rgps, it's worth exploring whether you could tolerate a different sort of lens. Other possible options might be Intacs (corneal ring implants which flatten the cornea and can improve the vision) and/or corneal crosslinking which is designed to stop KC progressing and which can sometimes bring some improvement in vision (although that's not what it's designed for). If you e-mail your postal address to anne@keratoconus-group.org.uk there's a booklet and a DVD I can send you which goes into the various options in more detail.
All the best
Anne

Hi Anne.
I can't wear contacts, i've tried, i just cant. Ive had KC for over three years, and generally im OK, i guess ive just adapted to it. I personally think im one of the lucky ones and its a mild form. Nobody in my family has it. My parents are both in their 50s and have perfectly fine vision. I have 5 brothers older than me, and none of them have any vision problems. So i dont think its degenrative. I used to rub my eyes alot as a youngster because i had hayfever, and i think that constant and hard rubbing has caused it. Since diagnosed with KC i have stopped rubbing my eyes, even when they feel a bit itchy, i just let them itch and don't rub them. And i dont think my KC has got any worse. Do you think that intacs and/or CXL would work for me? because like i said, i think i only have mild KC, i dont know? ? ? ? ?

Hi Tom,
Only a specialist can tell you whether Intacs or CXL would be for you - it depends on things like corneal thickness and whether there is any central scarring on the cornea. It's encouraging that you don't think things are changing - KC varies a lot in individuals and for some it doesn't progress very far. Hay fever and eye rubbing don't help, so congratulations on stopping the rubbing! On the family thing, although the medics think there's a genetic component in KC, it's only a minority of families where more than one person has it.
Anne

Hi Anne,

When i put my finger to my eyeline, and look through the shadow created at the top of my eye, my vision comes into focus, also when a push my eyelids with my fingers, over the edges of my cornea, then my vision comes into perfect focus! I sometimes do this, and just look around, everything looks so perfect! I think it must be easy fix, because with the ease of how my vision comes into focus when i do this? Im one of those stupid macho-men type freaks, who don't like seeing doctors/professionals etc, thats why i havent bothered getting any further help, and because like i said before, i can generally cope quite well, its just the annoyance. And the fact that when i push my eyelids over the edges of my cornea, my vision comes into perfect focus, then it makes me think, why cant i always have it like this?

Hi Tom

I hate -- truly hate -- any interaction with the medical profession and avoid the whole spectrum of doctors, specialists etc. at all costs. Colds, flu, anything whatsoever that can be ignored I just deal with rather than sit in some dreary waiting room dreading the impending "opportunity" to be fussed over ! That is, of course, apart from Keratoconus where I unfortunately can't avoid it

While I think that my refusal to go pestering the clinicians for those things that can be dealt with on my own is good (I'm quite proud of it in fact, and at the slightest encouragement will happily brag to anyone unfortunate to be in earshot about my refusnik record) it is a bit of a double edged sword. I went to a high street optician for many years who managed my Keratoconus quite well. But with the benefit of hindsight, I think back now and do consider I should have gone to a specialist practitioner for a review of my options sooner than I did. Actually, it wasn't until the optometrist threw in the towel with trying to get hard (RGP) lenses to work that I ended up having to get my GP to refer me to the NHS Primary Care Trust who had access to optometrists who worked with people with Keratoconus more often than the high street optician would be expected to do.

Even then, the array of options available under some NHS Trusts is limited, but my reluctance to do anything other than stick with what I knew meant that I didn't get to try out other methods for correcting my vision. Bottom line was, I ended up with poorer vision, more day-to-day discomfort and greater ignorance about how my condition could be managed than I should have done. While slipping in to hopeful (I might even say lazy) passivity about my Keratoconus was easy and excusable, I wish now I'd taken a more pro-active approach to finding out the latest thinking from a wider range of professionals and asking myself what I really wanted to achieve with my vision and then trying to bring that desired end-game about.

As you've said, you just can't get on with contacts. I'd suspect that the ones you'd tried were the standard RGPs. But there's more specialist RGPs which aim to achieve better tolerances for Keratoconus patients. Then there's soft lenses, hybrids, sclearals. Loads of different approaches. And if you want something more interventionist, there's intacs, crosslinking and grafts. But realistically, you can't get a handle on what is a complex set of variables unless you see specialist professionals who really understand each of these options and can give you the low-down on their various pro's and con's.

First things first: have you spoken to your GP about a referral to a vision clinic at your local regional hospital ? Or would you prefer to go down the private practice route ? That's the first question to decide, so let us know what your preference is (or if you want more info on making that initial choice, do shout up)

Just my opinion, but your Keratoconus is highly unlikely to simply get better on its own so the sooner you get seen by a professional or professionals who's opinions you are happy trust the less stressed you'll be about the whole thing and the easier life will become. Once you've found an agency who can actually manage your condition, whoever that turns out to be, you'll wonder how you ever managed to cope without the support they provide.

Okay, lecture over. Sorry if this all sounds hectoring, trying to give you the benefit of my past mistakes...

Best wishes (and Happy New Year !)

Chris

Hi Chris + Happy new year!

Ive never even talked to anyone about contacts, never wore them, never had anything to do with them!
When i went to the optician, over three years ago, he gave me a pair of glasses, which i never wear, he reffered me
to an opthamologist at my local hospital, who confirmed it was keratoconus and told me that it wasnt too bad as i was 22 when it first developed, and if it had been severe, i would have been on the operating theatre a few years ago!. All i wanted to know was, if you think this intacs and CXL would work for me? i think my KC is mild, and hasnt really progressed from when i was diagnosed over three years ago, but then again, i havent really compared it with anyone, because apart from online, i dont know anyone who has KC. And also, why is when i push my eyelids over the edges of my cornea, my vision comes into focus, lol, i sometimes hold it there, and enjoy perfect vision, aided by my fingers pressing my eyelids, lol.

Thanks Tom -- I understand your situation.

Where you're at is in many ways at a very lucky time because you've got a treatment available which wasn't routinely offered 10 -- or even 5 -- years ago. The crosslinking is intended to halt the progression of Keratoconus, ideally at the "mild" stage where you possibly are. It doesn't have the primary purpose of actually improving the vision you have, although some people have reported a degree of improvement. This should be regarded as a useful bonus if it happens but can't be relied upon. The downside is, the crosslinking option adds extra complexity to what is already a fairly complicated set of decisions.

So really, the big question is, how would you like to correct the effects on your vision, especially the halo effect at night ? Regardless of whether you had crosslinking or not, you'd have to figure out how to correct your vision. This is because generally speaking you can't guarantee that you will have suitably corrected vision even with crosslinking. You could of course gamble, have the crosslinking and see what happens. But you'd be a bit miffed if you had the crosslinking then found your vision was the same -- or even worse ! -- afterwards.

You might be thinking at this point "okay, but the crosslinking would halt the progression of the Keratoconus, wouldn't it ?" Which might be true, but the key information which none of us knows is, is your Keratoconus actually progressing ? If it's not, then the crosslinking question is immaterial. Only tests on your eye(s) taken with specialised equipment at a suitable interval apart can determine this. That's why it is important to get referred back to the hospital and start having regular tests. What they find out will tell you what the answer is to the crosslinking question.

Okay, back to your vision and the question you asked (sorry, I'll get there eventually !)

If you don't want to be "tied" to contact lenses, then the options are either intacts as you say or another possibility which is a variation on the LASIK procedure which they advertise on TV all the time. LASIK is more difficult for an eye with a keratoconic cornea and the specialist performing it would have to be very confident that your cornea was stable and of a suitable thickness. But the same applies to intacs too.

What I would seriously consider first though is trying out some lenses. For what it's worth, my initial hunch is that you'd be an ideal candidate for soft lenses for Keratoconus. I've used these myself and once you get accustomed to them, you don't know you're wearing them.

But... what any professional would need to guide you through this maze is a better understanding of the current state of your eyes. This means either going back to the local hospital and having some more tests done or going to a practitioner who is familiar with intacs, LASIK for Keratoconus or lenses (i.e. whatever type of treatment you're interested in).

Really apologise that I can't give you a "this is definitely your best option" type of answer. Best thing to do is to bite the bullet and get another appointment with the local hospital. If they aren't able to answer the questions you have about all the various treatment options available -- especially ones you're interested in like intacs or crosslinking -- let us know and we can give you some advice of what to do when your local NHS outfit doesn't tell you everything you want to know.

Hope that's of some help anyway

Chris