Newly diagnosed

[MattD87]

Hi guys,

Some fresh meat on the forum - 27 years old. KC was confirmed on Wednesday, even though I was 99% certain in my own mind once my optician suggested it as a possibility. Just wanted to share my story and perhaps pick up some wise words of experience and advice along the way.

It was either late 2009 or early 2010 (age 22) when I first noticed I couldn't see too well out of my left eye. Up to that point I'd considered myself lucky that I'd avoided the need to visit an optician with what I thought was perfect eyesight...

Anyway off I went to the optician complaining of what at the time I could only describe as double vision (I know now this as ghosting, of course) and was essentially dismissed flippantly. I remember well the optician using his index fingers to say "that's one, and that's two, now do you see one or two?". Obviously the second image was faded, and having know knowledge of eye problems up to this point had to accept his professional opinion. I had a glasses prescribed for reading/computer work even though they only slightly improved the clarity in my left eye and were essentially useless overall because my right eye was doing all the work.

I got a second opinion and a slightly different prescription, and this optician this time said he probably wouldn't have prescribed glasses for what at the time was thought to be astigmatism. I tried to get a referral through my GP because I knew something wasn't quite right, but he could only go on what the optician had said (astigmatism and myopia not worthy of a hospital referral.)

So I left things until this summer, which was when I started to see slight ghosting in my right eye and, worried this one might go the way of my pretty poor left (can't make out much with it unaided) made another appointment with the second optician. He suspected KC, referred me to the hospital and after three appointments (one eye test, one slit lamp exam where he couldn't find obvious signs, and finally a topography) it was diagnosed. In both eyes, though very mild in the right. The consultant said she would probably be able to get my left eye vision as good as my right with lenses, but has instead referred me to East Grinstead for potential CXL.

Sorry this is so long, but it's good to have a place I can discuss this weird condition with others who have it. Anyone with a similar experience out there? My big concern is keeping my right eye as good as it is, in which case this disease shouldn't cause me too much stress, but if it worsens then I'm very worried!

I could go on but I'll end it there - thanks for having me!

Matt

[Anne Klepacz]

Hi Matt and welcome to the forum!
I'm sure there's lots of people here with similar stories to yours, though these days most opticians are a bit better at picking up the early signs of KC so people are less likely to be undiagnosed for years. But at least now all the right things are being done. Contact lenses should certainly improve your vision and CXL should stop the progression of KC.
If you'd like our information booklet on the condition, just e-mail your postal adddress to anne@keratoconus-group.org.uk and I'll send one to you. And if your current vision is affecting you at work, do download the leaflets about KC and work from the home page of this website
www.keratoconus-group.org.uk/sitev3/publications.html
Let us know how you get on and don't hesitate to come back with more questions.
Anne

[CrippsCorner]

Hi Matt. Your story sounds similar to mine, and many others... albeit with the opposite eyes and more of a time frame between actually getting diagnosed!

I have been cross-linked on my worse eye already and have the better one booked in for next week. As you probably know by doing research, the idea with CXL is to halt progression, not reverse any effects, so for me the decision was made as I simply have to keep my vision good in my better eye otherwise I'm really going to struggle in life. Scary times just after diagnosis but keep your head up and ask away if there's any more questions

[NorthernStar]

How did the second eye go?

Moorfields have confirmed they want to do both my eyes at the same time. I queried this as their own leaflet (NHS) said they leave 7 days between each eye but the consultants secterary rang back and said its up to me

[CrippsCorner]

I guess although worse at first, getting them both done at the same cuts down overall recovery time?

[MattD87]

Thanks for the welcome all.

Anne - I will take you up on your offer, so expect an email shortly, thanks

Cripps - Thanks for the reply. I don't know yet if they'll offer CXL, but I'm expecting them to. Left eye can apparently be brought up to as good as my right with contacts, I've been told twice, even though I think the sight is absolutely awful in it.. but I'm the same as you that my big worry is if my right starts to progress.

I can see ghosting but can still pick out most of the bottom of the chart, so my concern there is if the CXL actually makes it worse - can this happen?

On the one hand I wish more had been made by the opticians when I first started to see my left eye going funny, but on the other CXL has only been available for a year so that, and my age meaning it will hopefully progress more slowly than if I was 10 years younger, kind of makes me think I'm lucky in a way. Weirdly...

[scottz750r]

Hi Matt,
Im in a similar situation to you, except it's my right eye which is bad. I was diagnosed about 5 years ago now(I'm 24)
My right eye has very, very poor vision on it's own. Although I can still pick off words just over halfway down the eye chart I have really bad ghosting, my left eye on the other hand has very little ghosting and can see practically all the way down the chart. I haven't even been spoke to about CXL really, they mentioned it last week when I had my appointment but basically said they don't do it yet because it's so new. I have a fitting appointment for contacts in 3 months time, so hopefully that helps as Im finding it increasingly difficult to drive at night.

Like you, I'm unsure about CXL as there is a chance of it becoming worse, if I was certain it would stay stable and not progress then I wouldn't do it, unfortunately KC doesn't work like that and you can't be sure how much more it'll progress.

[CrippsCorner]

Apart from risk of infection (nothing's risk free, after all) where have you heard about CXL making the keratoconus worse? As far as I know, the decrease in vision will only ever be temporary...

[MattD87]

Hi Scott,

It does seem we're similar. I think I could get third line down unaided, and maybe two more with glasses. Unaided after that point the letters just don't look in a line any more. The consultant said mild to moderate, going by the topography, although I'm perhaps thinking more moderate.

The driving at night is a worry, left eye has halos and distortion and if both were like it I wouldn't be able to drive. As it is, I have minor ghosting (but still noticeable) at night and I don't struggle much yet - topography had the very start of KC in that eye. I'm convinced it's getting worse, but I don't know how much of that is now knowing what to look for or paranoia...

Cripps, I think you're asking Scott but my 2p on that point: I don't think I've seen anywhere it makes KC worse, but I'm sure I've read it might make ghosting worse, which would make night vision worse. Fully prepared to be proven wrong though.

[Lia Williams]

Hi Matt.

You may find interesting to read the NICE guidelines for CXL which can be found here:

http://www.nice.org.uk/guidance/ipg466

Lia