UK Keratoconus Self-Help and Support Association

Hi there, as I said this is my first post on the site. I was diagnosed with KC around 9yrs ago (age 26 now). I just have KC in my right eye and a very mild (non-KC) prescription in my left At first I had glasses to correct the KC but it progressed quite quickly over the next few years to the point that I was given an RGP (about 7yrs ago now). I had real problems tolerating this and just stopped using it as I coped fine just using my left eye - apart from distance judgment that is!!

Anyway, i've recently been re-referred to the hospital as I find that the glare when driving at night makes it very difficult and I thought it was about time I had another go with trying to correct the right eye. I've been given another RGP and I've been persevering with this.... however, i'm having a few probs and have a few questions......... Just to give you an idea of my sight in my KC eye I can read the top line of the chart if its brought closer to me but nothing else! With the RGP its much better although not perfect - for example I could read the text on the computer screen if I was about 40cm away not not from any further.

the dicomfort is settling down but the main problems / questions are:

1) The lens keeps flicking out, especially if I look up and blink - I guess there isn't much I can do about this?!

2) Wearing the lens seems to make my binocular vision worse and seems to blue things that are close up - e.g the computer screen / keyboard are not as clear with the lens as they are if I close my right eye (admittedly i've only had it in for about an hour yesterday and about 2hrs today up to now) - but is this something that will settle?

3) A lens specialist that I see suggested that piggybacking / hybrid lenses wouldn't be any good given the severity of the KC in my right eye - can anybody confirm or disprove this?

I've been offered a transplant several times in the past but have always declined - i'm just not keen on the idea but that probably because I don't know much about it.....

I would be really grateful for any advice

Hello Forty and welcome to the forum.

1 A lens that keeps popping out when you look up or from side to side can be caused by the fit changing. I'd go back to have that checked by your optometrist. This can happen very quickly, even if your lenses are brand new.

2 Can't help you there, but again you should mention this effect to your optometrist.

3 That's a hard one because your lens fitter has looked at your eye through the slit lamp and has a good idea what (s)he saw. it may be that there is an issue of vascularization, but even if that was the case I am surprised that the idea was dismissed so quickly. Maybe one of our optometrists will be along in a moment and can give an explanation of why this might be.

Anyway, every good wish. Let us know how you get on.

Andrew

Hi Forty something
As Andrew says, no-one can give you a definitive answer about contact lenses as we cannot see your eye. However, what I can say is that if an RGP works to some extent to then hybrids and piggybacking should. Also there are many other types of lenses available including softs and sclerals, which will work with most levels of KC.
Lynn

Hi Forty

1. As Andrew said this could be a matter of fit, or it may be that the cornea is so steep that it gets very difficult to get a stable fit. Sometimes using a large diameter lens can help which may need to be custom-designed. You need to discuss this with your practitioner
2. Its not uncommon for patients who have good vision in one eye, and advanced KC in the other to have problems with binocular vision. As its probably not possible to make your right eye as good as the left even with a contact lens, and your brain is so used to using the left eye only, the right eye could start "interfering" with the left, and you feel more comfortable relying on the left eye only rather than trying to make the two eyes work together. As you get used to wearing a lens in the right eye things could sort themselves out, but some people feel more comfortable just relying on the good eye.
3. Piggybacking usually involves using a disposable soft lens under a rigid lens, but if your cornea is very steep disposable soft lenses just wouldnt fit, and you might need a custom made steep soft lens. I have a number of patients needing this, and it can work well, but is obviously more tedious and more costly. Hybrid lenses are fitted on the system of "corneal vaulting" ie avoiding any touch with your cone, hence if you have a very steep cornea it may be outside the range of hybrid lenses.
I hope this helps