first post

[crumbeye]

Hi,

I am basically writing on here for some advice and also because I don't know anybody with Keratoconus.

My name is Rob, and I am 26, was diagnosed with KC when 17 (only knew because of driving lessons). I currently wear (and always have since diagnosis) RGP lenses, which I feel I am used to although they are far from ideal. I hesitate to say they are comfortable, I think it is more that my brain has accepted them as part of my eyes now. Without my lenses I cannot function in a normal way, which is to say they are now essential.

I attend the Southampton eye clinic (NHS) every 6-9 months, next appointment is the 15th of this month. I am not sure how bad my condition is compared to everyone else, although I do know that my right eye is bad enough to be in the range for a corneal transplant, and my left eye can't be much better.

I know that regular soft contact lenses are of no help to my sight, and I am unsure about the effectiveness of intacs or crosslinking for my eyes. I have only just heard of 'kerasoft3' lenses, and I am curious if they would be a better solution than RGP lenses.

I am wondering firstly whether these kerasoft3 lenses would benefit my eyesight, bearing in mind that standard soft lenses did not help?

any advice would be much appreciated.

Rob.

[Andrew MacLean]

Rob

Welcome to the forum

I'm sorry to hear about your condition; I guess most of us here know exactly what you are going through. As to CXL, if your eyes are approaching the point where they would consider a graft, it is possible that your corneas are already too thin for this procedure (I think that the standard safety cut off point is that they do not offer CXL if the cornea is less than 400 microns).

As to Kerasoft 3 and the other new lenses, I am afraid that no one can answer the question, except to say that a great many people seem to derive considerable benefit from these new lens types. The only 'health warning' is that each of us is unique and each will respond differently to particular lenses or lens materials.

All the best

Let us know how you get on this month.

Yours aye

Andrew

[Lizb]

I'm sorry to hear about your condition; I guess most of us here know exactly what you are going through. As to CXL, if your eyes are approaching the point where they would consider a graft, it is possible that your corneas are already too thin for this procedure (I think that the standard safety cut off point is that they do not offer CXL if the cornea is less than 400 microns).

whilst this may be true in some places, how specialist in understanding KC (and the newer treatments) are Southampton Hospital staff? I know from my own experience i could be considering a graft for my left eye but my knowledge from gained from this site (and other places on the internet) meant i could ask the question at my hospital about intacs and/or crosslinking as an option for me - when i asked the question the doctor seeing me turned round and asked "what are those procedures?" As you can imagine it didnt fill me with much trust in my hospital, though to be fair they are handy for regular check ups for my eyes.

I am now booked in for a consultation in august with a private surgeon to see about my suitability for CXL/intacs for both my eyes (I can afford to do this for my eyes). My history is left eye diagnosed and detoriated over the past 10 years or so - but still strugglling to get on with contact lenses of any sort (i have tried numerous ones in the past twelve months), my right eye is only recently diagnosed and i can cope with glassses prescription for the right eye currently - though i was told it wont be long till i wont be able to.

My advice to you is to print off the information from this site, and other sites about CXL (not currently available on NHS unless in trials) and Intacts (should be available on the NHS - though not at my hospital i would have to be referred elsewhere) and take it with you to your appointment and ask the question "am i suitable for either of these options"; also ask the question about the different types of lenses out there, kerasoft are just one of a number that have been developed in recent years.

Good luck at your appointment next week and i hope you are able to look at other options and not just a graft.

[GarethB]

Hi Rob,

Welcome to the forum. We have now had many cases of people told they require a graft because it was no longre possible to fit them with a contact lens only to find that a Scleral lens gives them extremely good or perfect vision and now we are getting cases of the Kerasoft 3 lens providing people with extremely good or perfect vision.

To be honest the only way you will know if a different lens type will work is to try it. I was told soft lenses would not work but the hospital tried any way and they were correct. That was 3 years ago and technology has moved on and they admit they were wrong not to have a second go with the newer soft lens materials. The Kerasoft 3 has revolutionised my life.

What you do need to e aware of with the soft lenses is that your cornea will probably go through a period of demoulding. The topographies on my right eye before RGP fitting and post shows readings that I have KC. Since wearing soft lenses for six months my cornea has slowly flattened and the same measurments say I no longre have KC. We are all different so there is no suggestion you will have the same result.

Like I say you need to try them and like most lenses you will probably require a couple of fittings, especially if their is corneal demoulding taking place which i think is dicatted by the type of lens fit you have.

[crumbeye]

Thanks for the replies,

At my appointment next week I will definitely be asking about 'kerasoft3' lenses, though I am more than aware they may not work. Are these lenses rigid enough to give the cornea a regular shape? The soft lenses I tried before were not, and therefore my cornea kept its irregular shape - which is why I have to wear RGP lenses. I understand that each case is different.

It is not that my right eye needs a graft, in fact my opthalmologist recommended I keep with RGP lenses, it is just in the range where a graft could be considered.

Rob.

[Lynn White]

Hi Crumbeye!

Let me explain about soft lenses for keratoconus. These are not like normal soft lenses that are very thin and drape over your cornea, replicating the distorted shape. They are thicker and have more complex designs. Technically what happens is the back surface is soft enough to fit closely to the cornea but the front surface is stiff enough to hold its own shape, thus it creates a whole new surface for your eye. There are several makes available in the UK and have been for years. Wearing time is generally much longer than for RGPs and they are much more comfortable. Many people who wear RGPs do better in soft lenses - a patient of mine collected his today and saw 3 lines better than in his RGPs.

The KeraSoft3 is generally very good for mild to moderate keratoconus. If you have a more advanced KC, then you may do better with the new KeraSoft IC(Irregular Cornea). If you have more questions you want to ask about these lenses, you can contact me via the links below or pm me.

Lynn