UK Keratoconus Self-Help and Support Association

Hello All

I haven't posted for a while as I've been getting on OK, my mild KC only has minimal impact on my life at the moment.

Since diagnosis nearly 2 years ago I've been struggling with RGP lenses. First I had Rose-Ks - they were pretty useless as they wouldn't stay in place, were quite painful and the quality of vision was not good.

I'm now on intra-limbals, which have sorted the lens motion and comfort issues, but once again the quality of vision isn't good, not as good as with specs, although with either I can just about get the 20/20 line on the downloadable snellen chart.

So my questions are:
1. should RGP lenses give crystal-clear, pre-KC type of vision? if so, that's one for the optom to figure out
2. if not, is it a case of waiting until vision has deteriorated enough so the lenses *are* an improvement on specs?
3. if (2) is true, am I trying RGP lenses too soon?
4. am I expecting too much?!?!?

all answers gratefully received...
Graeme

Graeme

Hard questions for us to answer but since when has that stopped us having a go.

1) The aim of any lens RGP or otherwise is to give better vision. The benefits of the lenses depends on the type of KC of which I think are about six if memory serves from the AGM.

2) Possibly, the cone can steepen if the cornea thins in one place or broaden to a degree of the corne thins more at the base of the cone. unfortunatly KC is not an exact science regarding when and how it will change.

3) Possibly however general perceived wisdom is that RGP's should be the first port of call if glasses are inadequate.

4) To be honest if you are like me when I was first diagnosed I expected 20/20 and to be equaly honest why not? Fact of the matter is there are plent of people without KC that survive perfectly normally being able to make the driving standard line. Once I had a graft and realised what I could do with vision that was only at the driving limit I did lower my aspirations. As luck would have it, post graft I did get 20/20 unaided. Now with lenses again I get 20/20 but my aim from sight correction now is to be able to see enough to drive safely for at least a couple hours per day. Without lenses I cna not see the chart with my right eye and only get a couple lines with my left. With such reduced sight I still do all the normal things I did before except drive and race cars.

There are other lenses to try, I get on fine with RGP lenses, but I really wnat to see if I can start racing again and for that I must have 20/20 vision with a soft lens which leaves Kerasoft which is not normaly used for adavnced KC, but there have been succeses in using these lenses in such situations.

The piggyback system has helped some with lenses that fall out. It is almost as if the RGP 'clings' to the soft lens that is on the cornea and would rather be there than ping out, plus you have the comfort. Kerasoft as mentioned and then there is the Scleral lens.

I do know of cases where best vision is obtained by using bot contact lenses and glasses, one corrects the KC abnormality and the other corrects for natural myopea and/or the myopea induced by having the lens fitted.

It seems you are part way there, you have the lens movement sorted, now you want the visual aquity.

What is the level of corrected vision that you have at the moment?

Hope this helps some and I kow some is vague but KC does not always allow black and white answers.

I agree with Gareth on the piggy back front.

I have been piggy backing for 4 months my lenses never fly out and my coning is very steeped.

Gareth, my rift goggles are great thanks for the pointer.