UK Keratoconus Self-Help and Support Association

Hi,

I'm 25 and have had KC problems for the past 5 years - my current situation is the condition is in both eyes but really only noticibly effecting the right eye where it is quite pronounced and vision through this eye is a total blur. In the past 3 months I have had an appointment at Moorfields with the hope of getting a RGP lens for the right eye - after trying some which didn't improve my vision I was told that they would not work for me... I was also told for the first time that the condition was in the other eye. My vision currently through my left eye is great... so was told that i should just be grateful that I can see out of that one. I was then informed that it is very unusual that there is such a difference between the two eyes and that uni-lateral KC is almost unheard of.. Then the scary talk of transplants came up if the good eye turns... I was hoping anyone could give their thoughts/views/ knowledge on the following:

1) Should I expect the good eye to get worse - if so how long? Any chance it will remain with the condition not becoming noticable..
2) Is it normal that RGP lenses don't work for everybody?
3) Would it not be wise if the left eye is guaranteed to get worse to have the transplant on the right eye whilst the left one is in good condition... This didn't seem like an option in the hospital - it was more a when they both go and your basically blind - then you can be put on the list...
4) Are there any Unilateral KC sufferers? How do you find working at computers etc - is the disparity between my two eyes likely to be the cause of my headaches and strange feelings of dissorientation/dizzyness...

Any other info/ advice would also be greatly appreciated...


Jack.

Hi Jack.

I know how you feel, worrying about what might happen and having so few answers. That was me a few years ago.

Lets see what we can clear up for you:

1) No-one can say for sure if your left eye will get worse, every case is unique. Keratoconus is a progressive condition, so it is likely it could worsen, but to what extent and over what time period no-one can say. I was originally told that it progresses during your twenties and then settles down, but there are people on here for whom this is not the case.

2) Some people are more tolerant of RGP contact lenses than others, but on the whole they generally only work upto a certain point. As the shape of the cornea becomes increasingly irregular, it becomes more difficult to fit a RGP lens that provides adequate vision and comfort. There are other types of lenses that you may have more success with, you should try out alternative options before going for a graft. But it depends on how advanced your KC is.

3) I had my right eye grafted while I was still (barely) coping with a lens in my left eye, and although my graft has been a success, I would still emphasise that it is a last resort - success is not guaranteed.

4) As far as I'm aware KC is usually bi-lateral, although that doesn't necessarily mean they'll progress at the same pace and/or extent. (My now-grafted right eye was once my good eye, but overtook my left - which now seems to have settled down).

However, while I was waiting for my graft I was only able to wear a lens in my left eye - which I have now given up on, relying on my grafted right eye. So I have been without balanced vision for some time!

It's not a major problem, your brain gets used to it - but occassionally gets caught out because it can't judge distances properly.

Things like being rubbish at catching, and sometimes feeling a bit nervous with steps and stuff - and shaving, that's a pet niggle of mine, everything goes blurry when you turn your head too much to one side = wonky sideburns!

My consultant said I'm OK to drive with just the one good eye a while back so I guess that sums it up.

PS. What you said about uneven vision causing problems using computers - I only noticed the other day that I don't have my screen straight on, it's slightly angled towards my good eye. I accidently knocked it and put it back straight, and it felt a bit uncomfortable to look at until I angled it to the right a bit - weird.

Anyway, hope that helps.

Rob.

What has been said is spot on, you can cope with unbalanced vision, your bad eye seems tp be on a par with mine, but I can see well out of the left that I am perfectly legal not only to drive but race too!!!!! This can be un-nerving for my co-driver when we are i a left hand drive car as I find myself closing the right eye to get a sharper view of the corner coming up. The first couple of times he thought I had both eyes shut!

My graft was done 16 years ago and worked brilliently, but this is a last resort and eveyone is different. Be positive and do not worry if you need a graft, at best you will have improved sight, at worse, it will be no different so you have nothing to loose should it be necessary and it not as painful as you might think.

Good luck

Gareth

Hi

I also experience dizziness and disorientation - my doctor has said its nothing to worry about and my nhs optitian was not sure if kera can cause such things - its been worse about 4 weeks so I dunno if it is Kerataconus causing it, but it seems worse when my lenses are out or when there's a lot to take it - anyone else feel kinda overwhelmed and dizzy like this?