UK Keratoconus Self-Help and Support Association

Hi all

I am new to this forum. I have had KC for 15 years, but it is becoming more of a problem now. I have not been able to drive for the past 3 months as the hospital cannot correct my vision any more with the Kerasoft lenses I have been using.

I am currently trying RGP lenses for the second time, but am struggling with them as they make my eyes very sore. I have been told to persist with them for another couple of weeks to see if I can get used to them, but if I can't then the hospital have said they will try piggyback lenses as a last option before being recommended for surgery. Has anyone tried this system? From what I have read it is not an ideal long-term solution?

The hospital told me that the piggyback system has to be used with care because as you are using 2 lenses rather than 1 you are doubling the chance of starving the cornea of oxygen. They said I will only be able to wear the lenses 12 hours a day and suggest that I have a break 1 day a week as well. This just will not be practical, as without lenses I can see very little.

I was also wondering about the stability of piggyback lenses on the eye? I do a sport with a lot of hard, physical contact and am worried about the lenses being disloged easily.

Any advice or info on piggyback lenses will be much appreciated.

Thanks
Dan

Dan

Has the hospital explained why they do not want you to try the new soft lenses designed and made especially for people with Keratoconus. I am thinking about kerasoft 3 in particular, but I know that there are others on the market.

Also, have they ever suggested that you try something larger, like a haptic or scleral lens? The advantage that these lenses have is that they vault over the cornea, resting on the white of the eye.

It may be that the time is coming for you to think about surgery, but I'd have thought that there might be other lens options that you might want to explore first.

by the way, I am not sure how well piggy backs would hold up to vigorous sporting activity, although there may be someone along in a moment who can put your mind at rest on that account.

Welcome to the forum

Andrew

Dan,

One option to think about if lenses become too prblamatic might be intacs which help flatten the cone so making lens fitting easier and in many cases more comfortable. Some consultants are offering this with CXL, so the cornea is mademore regular and the idea of the CXL is to 'lock' the cornea shape.

As far as physical sports are concerned, any lens can become dislodged but wearing sports goggles can help protect the eye. Then if a lens gets dislodged and pops out of your eye it is caught in the goggles making recovery and putting the lens back in a little easier.

Again Dan, I answered this on another thread

The new KeraSoft IC material allows all day wear and the new design gives better vision, so do ask again. If you have any queries, you can contact me by PM, email or mobile... details below.


Lynn

Thank you all for the helpful advice.

I think I need to find out from the hospital which kerasoft lenses I've got at the moment. If they are not one of the new types then I can take it further and find out why they are not recommending them, or others designed for KC.

Dan.