UK Keratoconus Self-Help and Support Association

Hi, I've been popping into this forum for a while, and only just decided to post a question which has been bugging me for a while now,

I have been suffering KC since I was 14-15, I am 24 now, always teasured my eyes as I love art and computer art, however my KC has got pretty bad now, I have suffered hydrops in my right eye, there is a little fog remaining, and my left is ok at close distances with my lenses (but when im outside the world seems a strange and uncertain place at times!)

Anyways, I went for a topgraphy recently, the scan showed that my left (normal) eye has either alot of scarring or is steep, I didn't quite understand, but the map showed alot of red in the center, my right eye however (eye I have suffered hyrops in) had only red around the edges and seemd smooth in the middle.

My opthamalogist has alwayys told me my right eye has more davanced KC, but until I lostt vision in that eye, I've always had better vision in my right eye. Even now, without my lens in my left eye, my right seems much better (as good as can be) but justt a bit foggy.

Consultant has placed me on a waiting list for a graft in my right eye, I'm just wondering, would a lens in my right eye not help correct
my sight? Maybe im just hoping for a solution other than a graft here, but I do feel my right eye has a better cornea !

M

sorry i cant help, im new to all this but GRAFT i would say go for it. If i was offered a graft now i would take it right off. And my eyes arent all that bad. I can get good enough vision with no contact lenses but i would still take the GRAFT. i dont know how useful it is to you but C3R seems the new wonder treatment for KC. yup it has lots of if's and but's but so does life. good luck anyhow!

MZFP2

Welcome to the board and its good that you posted!

Its very hard to say if you can get a lens in your right eye. Do you have the topography with you? To read out some readings?

Which lens types/designs have you tried in the right eye?.....There are a number of lens designs you can try such as RoseK2, Scleral etc. If you have tried all them and still cannot get satisfactory vision than maybe you have reached a stage in the condition whereby you need to make a decision.

The other eye and its topography results are common. After the hydrop settles down, in the majority of the cases the "cone" and "steepness" of the cornea regresses. However, the problem with hydrops is that it does leave by a scar...now that can be on the side or it can be dead centre!...if its the latter than theres very little that can be done as it will appear that you are always looking through a misty glass.

If you cannot get vision from the hydroped eye, and the other eye is getting worse I would definately recommend that you evaluate the next stages of treatment/management options.

Hope that helps

J

Hi, and welcome to the forums.

How long ago was the hydrops?
If it was in the last few weeks/couple of months, it is possible that the fogginess is still the hydrops clearing up, and will clear in time - or at least, clear up a bit more and you'll be able to cope with it there.
If it was several months/years ago, then it's likely to stay foggy permanently.
Hydrops can indeed change the topography - both short term (puffs out the eye, due to all the fluid waterlogging the tissues) and more long-term (some say the scar tissue over the rupture makes the cornea tougher).

As to whether to go for a graft, this does depend on how well you can cope with looking through any residual fogginess/scar tissue.
There's no reason at all why you can't have a lens back in a eye that had a hydrops - though fitting one is better left till after the hydrops has settled down, healed over, etc, as the shape may change again. Also, an eye that's recently had a hydrops is pretty tender and gets sore more easily with a lens in it.
If there is a bit of scar tissue left, only you can say how much this affects your ability to cope with the vision.
SOme people would prefer to be looking out through a scrap of mist than to have to go under the knife. Others get so much scarring and white mist they don't want to have to put up with it - or can't cope with it there.

Either way - you shouldn't be having a graft operation until the hydrops has settled down properly and healed as well as it can heal. SOme hospitals have a record of seeing a hydrops and scheduling a graft a.s.a.p., but grafting onto on eye which is still in hydrops recovery isn't exactly the best bet.

Rosemary

Welcome to the forum.

Funnily enough my "better" eye for many years was the one thats now waiting for a graft and is currently next to useless. The other eye which really is better is only in the early stages we think (will have a cornea map done after the graft).

Anyway good luck with it all - and feel free to scream, shout ask questions and share the odd moment of joy with us all.

We don't bite (much).

Paul

Hello there and welcome to the forum!

I am sorry to read about you having hydrops and am really hoping that it settles down soon and that you can try a lens. As already said i would give lenses a go and if the vision is still bad then consider the option of a graft.

Many here have had one including myself, so you will find loads of advice and support.

Take care

Sweet X x X

I am very pro-graft, but still it should be approached with caution, once done, if there is a problem such as rejection which although uncommen is a possibility leaves you with a regraft.

Grafts can give uncorected vision, however most cases require correction with either glases or lenses.

So before going for the graft, make sure all other possibilities ave been exhausted.

Despite the years of grafts being done, the first 100 years ago, it is amazing how little information there is about them post 10 and 20 years.

Ask lots of questions, just like children doo anbd ensure you weighup all the pro's and con's before going for it.

A graft is just like any KC treatment; a management system, just moe long term rather than a cure.

Even the new C3R referred to in another post at this stage should be regarded as another managment startegy for KC rather than a cure.

Regards

Gareth

MZFP2

Along with my elders and betters, let me also welcome you to the forum.

In Glasgow. Hydrops is considered an indicator for an early graft. They take the view that the occurrence of hydrops is a sign that the cornea has deteriorated beyond the stage where other 'management' of the condition is possible.

I see from the other strings that this is a view not universally shared.

I was already 53 when I eventually agreed to my first graft. I'll be 56 when they do my second eye (this year).

It may very well be that the time has come for you to have a graft. Take advice. when next you see your consultant have all the questions you want to ask written down. go through them all. At the end of the consultation ask if you can have some thinking time.

Go over your questions and the answers, ask yourself if there are any issues that arise.

when you go back in go over the secondary issues.

If you are satisifed, then go ahead.

I waited until I was legally blind before having my first graft. Some may think that this was unwise. Maybe it was, but it was my choice and that's the way it has to be. I have never regretted having the graft, and look forward to having number 2. Like Gareth, I count myself as very pro-graft.

You will be the person who lives with the result of your graft.

Andrew

Hi,

I would hope that if your consultant has reccomended a graft that he has done so as it is the last resort and that he honestly feels that there is nothing else that he can do.

Assuming that that is the case, I would be inclined to go for it (but then I am in the same boat as you) because it is very likely (according to my consultant and others in this forum) that the other eye will also be affected by KC as well.

At which point I at least want to get the bad eye sorted out and usuable before my good eye is unusable.

At the end of the day the choice is yours, it is a daunting choice but you do have it.

All the best

Paul

I agree with Paul on this one. I was quite angry at the time that I didn't go for the graft when it became necessary. At that time, my right eye was quite reasonably correctable using Rose K contact lenses.

By the time I went for the graft though, the non-grafted eye was in a spurt of KC progression, and I was left unable to drive for about a year or so (when the grafted eye was finally up to it).

My advice is therefore twofold and contradictory, I'm afraid.

1. Avoid a graft as long as you can, especially if there are non-invasive options yet to be tried.
2. Have the graft whilst your other eye is good enough to last you the next year or so.

No-one said it was easy