UK Keratoconus Self-Help and Support Association

first off some background i had a cornea graft over 20 years ago after acute KC and hydrops, and have managed to get along fine without the very painful (at the time) contact lens, the sight in my other eye was fine with no KC symptoms and vision overall was adequate, anoying at night with streetlights and things but i can honestly say my vision never worried me

5 years ago i had cataract surgery in both eyes again KC was detected in my "good" eye but with no symptoms, my consultant said my graft eye isnt dead but would require more surgery before even a hard contact lens would help

over the past year the sight in the eye where i had my graft has gone downhill and is interfering with my overall vision quite badly, at first it was thought it was caused by cloudiness in my implanted lens but laser surgery has failed to give me any improved vision, bad enough right? but to cap it all ive noticed KC symptoms in my "good" eye, the telltale halos and glare are back

im under the care of the local optothalmy clinic but thats just for after care for the laser eye surgery, im back there in a months time for a checkup but i know theres no miracle cures

quite frankly im terrified, my case of KC and hye drops was the worst the consultant has ever seen, when i had my recent laser eye surgery the doctor wasnt able to focus the laser through the graft without putting a contact lens on it,

i stumbled across this forum this morning and just want to eet this off my chest to be honest, should i ask for an earlier appointment go to casulty or what?

im living on my nerves and feel like my vision is on a ticking clock, having gone through it all once makes it worse if anything because i know how bad things can get and the prospect of having all my fears confirmed my a doctor holds no reliefs

are the hard contact lens' still as painful? are there any new treatments? anyone?

Hi Stevie

Sorry that you've hit a rough patch after a period of relative stability. Keratoconus can really be "the gift that keeps on giving". And not in a good way

Okay, let's look at your current situation. First off, never be concerned about going to A&E if you've got any of the following:

* A sudden significant deterioration in your vision
* Persistent pain of any degree in the eye which doesn't go away within 24 hours
* Any eye pain which is severe enough to awaken you from sleeping
* Swelling, redness, extreme sensitivity to light which is anything other than transitory
* Any discharge from the eye

From what you've said, it appears that your vision has deteriorated gradually. If that is the case -- and it's not accompanied by any of the other characteristics I've given above -- it's probably not an emergency. That said, use your judgement. Especially given your known history of hydrops and having had a graft. If you do decide to go to A&E, it might be better to find a hospital which has a specialist eye unit. Typically, the duty clinicians in casualty won't have training or experience of complex eye conditions.

Otherwise, its just a matter of sitting it out until your appointment with the ophthalmologist. That is the worst bit because what else can you do but think about things -- in a vacuum without anything by way of proper facts to go on ? You'd have to be a master of stoicism to not assume the worst. If you're being put under stress by the wait -- especially with your symptoms and history -- it's not at all unreasonable to go back to your GP in Primary Care and say that you'd like an appointment sooner than a month. It could help if you're prepared to be a bit flexible about where you go -- if you don't mind travelling further.

One thing that stands out from what you've written -- you've had a lot of refractive surgery given your diagnosis of Keratoconus. The cataract removal makes sense, there's really no alternative to this one if it's necessary. But the laser eye procedure, what lead the clinicians to recommend that ? Was is because of contact lens intolerance ?

Do please let us know how you get on and that you're okay.

Best wishes

Chris

Same happened with me back in 2004 and rapidly exhausted RGP lenses over a period of 4 years.

Now changed to soft lenses for KC and since then, my vision has pretty much been stable.

At least there are two of us on this forum that have encountered this which is a sign of how rare an occurance this is.

Anyway my vision does change from day to day, at worst it is 6/6 corrected and at best it is 6/5. With RGP's it could be far more dramatic and lens tolerance could be a matter of hours. The only tiem I wold go to A&E was if the discomfort was accompanied by a bloodshot eye and sometime a capilliary would burst so the eye looked worse that red sore bloodshoot.

I've always been advised against laser eye surgery, so in your case it is hard to say if KC has returned or if you are experiencing something else due to the other refractive surgery you have had.

Steve

Deep breath!

OK - first I think we have a confusion over laser surgery. The guys here think of laser surgery as refractive surgery (lasering the cornea) but what you describe is more likely to be lasering of an opacity on the post cataract lens implant.

This did not help your vision, so this may mean that your graft has shifted position. This is not that unusual after 20 years post graft and indeed Gareth has had this problem also, which was corrected with soft contact lenses.

I am not belittling your situation but trying to reassure when I say that a shift from 6/5 to 6/6 is not that dramatic. I spent quite a bit of time with a patient today where his vision shifts from 6/9 to 6/60. It is not uncommon for people who have non progressive KC to be unstable like this and indeed, if you check out other posts on CXL here, you will see I talk about this situation a good deal in terms of people going for CXL in an older age group.

KC means your cornea is up to 60% softer than a normal one. This then means that even sleeping on your face can cause your eye to change shape from night to morning. This situation can suddenly change after years of stability.

As Chris says, this is not an emergency situation and really, one does not get the best KC management in A&E. They are dealing with emergencies, not overall eye management.

Lynn

thanks theres some really useful stuff in here im still in panic mode but ive got a lot of new things to talk to my consultant about, i think it will be a matter of sitting tight for a few weeks til im back at hospital since all these problems are gradual ones, this will be the worst part

the laser eye surgery i mentioned was a lasering of my implanted lens to get rid of some clodiness in the bag of tissue the lens was implanted,(dont know the technical term)

ive coped with rejection episodes before (3 of em) which were casualty situations, ive always been faily positive about my eyesight problrms but this latest episode has just brought home the fact that this is a lifelong situation rather than something that can be cured with the latest treatments