UK Keratoconus Self-Help and Support Association

I'd like to know how bad your vision was before making the decision to go ahead with the procedure.

When I last saw my consultant after my 'failed' CXL, I asked what the worse case scenario would be... of course, like most things keratoconus related, it would be to have a graft. This week marks the 4 month spot and I've seen very little, if any improvement. I was originally told it was unlikely that I'd see any improvement until 3-6 months, so I'm still hopeful things will get better, but it's hard not to think of the worst!

What I see out of that eye right now... 'mainly' just shapes. With certain things I can see some detail, especially if I prod and poke my eye around when looking at someones face from a metre away I can see where the facial features are, but nothing more. Close up reading is impossible, however I get a strange phenomenon outdoors where I can sometimes see road names and even number plates, albeit with a massive amount of ghosting. My theory here is that the pupil constricts so much it actually manages to avoid the haze a bit. In fact I just tried a little experiment of shining a bright LED on to my eye and looking at the forum, and I could indeed just about start to make a couple of words out.

I can also see clearly when using pinhole glasses or have an eye droplet on my eye (which only lasts a few seconds) I don't know if anyone else has tried this but it gives almost perfect vision, really quite amazing, but also damn cruel!

Obviously I understand my case is perhaps a bit more unique than the average person that goes on to have a graft, but does my vision at the moment seem better, worse or roughly the same as before you took that decision? Just trying to prepare myself... one of worse things of course is that contacts etc. don't make any difference because they can't get round the haze. I was 20/25 in that eye before CXL

Prior to my first graft, I was legally blind. I deliberately waited until I had no useful sight to lose before risking a graft. I do not regret that decision, but if I had known then what I know now, I should probably have accepted earlier offers of surgery.
All the best. These decisions are never easy to make.

Hi Olly,
As you say, it's difficult to make comparisons as every case is different. When I had my original grafts many years ago, I was still wearing contact lenses though vision even with them in was poor and they were very painful to wear so every day was a struggle. I also had advanced KC in both eyes. Without the lenses in, I too would have been legally blind (and in practice was as soon as the working day was over!) So for me, there was no decision to make - I couldn't go on as I was, with the prescription changing for the worse every few months. For you, it's a question of whether the haze will finally start to lift in the next few months. So not a decision you need to make yet, though if it does come to it, there's definitely life after a graft!
All the best.

Without lenses I’m sure I too would have been classified as legally blind. It was a long time ago but I remember that without lenses I could not cross the road or even butter my toast easily. I had to stand about 5 foot away from the top letter on the eye chart before I could read it. That said, with the aid of lenses, I was still commuting into London on a motor bike.

The decision rested on my ability to tolerate lenses. The Gas Permeable ones were becoming more difficult to wear. Especially from about 18 March with the tree pollen. This seemed to happen every year almost to the day.

My surgeon did say that he was surprised how eagerly his KC patients were to go under the knife. That was in 1986 when there was very little information about.

I had one graft then and another in 1995. In the interim. I found that only wearing one lens with spectacles for the other very successful. However, I was always falling over as I was often only using one aide. I didn’t realise this until I ceased to be accident prone after my second graft.

After the grafts I was discharged and quite honestly forgot all about Keratoconus. That is not to say my vision is perfect. I do have an astigmatism of 7.5 on one eye and have difficulty in driving when it is too bright or too dark. However, with the aid of spectacles I have led a perfectly normal life.

Good luck with your decision.

Thanks for the replies guys, interest reads...

A little update on my situation. Literally just over the past week or two I've started to see a very slight improvement, albeit only with close up vision. Strangely enough it coincides with me stopping medication of Maxidex steroids (because I was starting to develop a droopy eyelid) anyway I had my first check up at the hospital since the beginning of February and it's the first time testing my sight with different lenses etc. has made a difference.

Don't get me wrong, it's still awful... but there's awful and there's awful

Anyway my optometrist didn't order any lenses this time as she said by the time they come in (6-12 weeks on the NHS) it would have probably changed (hopefully improved) again.

It's the first bit of optimism I've felt since the whole ordeal started in December, so cross your fingers for me! Also, it's worth noting that CXL once again has reduced my astigmatism significantly, from 2.25 to 0.75! However, it has apparently made me long sighted, weird.

On a side note, I also had my first post-CXL scan. Below in the top left square you can see a blue area on the bottom of my cornea; that's the haze! It basically makes that part of the data erroneous...

http://i18.photobucket.com/albums/b133/ ... sealbj.jpg

NB: Mods... I made that image absolutely tiny but it continued to come up with 'file too big' when trying to add it as an attachment!

My fingers are well and truly crossed! It's been a long wait, but let's hope this is finally the start of the haze lifting.

Delighted to hear some improvement Olly. Fingers crossed for more.

Do they think the long sightedness is temporary until the haze clears further?

They said that's definitely possible, so here's hoping!