UK Keratoconus Self-Help and Support Association

Hello everyone, hope all is well. Firstly, I apologise for not posting as frequently as I used to here. I will try to post more often.

I have had a few changes recently. You may remember I was using 'flex-edge' lenses (soft edges, hard centre) for a while. They were great in my opinion for 2 reasons. Firstly, they NEVER fell out or moved out of place. Secondly, I never had any dust etc getting behind them. However, more recently, I was starting to have a little trouble with them. It was getting harder at Gartnavel to get new lenses adjusted accordingly, and they were poor for oxygen penetration.

So now, I have started using piggy-back lenses. At first, I was determined not to try them - I didn't want to go back to the RGP falling out all day again. And then there was the idea of having two lenses in my eye. But, I was pleasantly surprised (after a couple of days of wear) to find that they did not fall out often at all, and my eyes started feeling less fatigued at the end of the day. Maybe it has something to do with the soft lens under the RGP that prevents it from falling out... not too sure on that one.

Finally, I have been put on the waiting list for a transplant later this year. It is getting harder to fit lenses, and the corneas are becoming progressively thinner. I wasn't too keen on going ahead with a transplant already, but Dr. Ramaesh has strongly recommnded it. He says he would not normally encourage it at my age, but this summer may be one of the few chances I will get time for it without disrupting my studies. So, after a lengthy discussion, I agreed to put my name on the waiting list, and we have aimed for a DALK in June. Wasn't feeling too good about it at first, but it's probably the best way forward for me at the moment. I learned some interesting things from Dr Ramaesh too - I never knew the donor cornea is gradually replaced by your own tissues after a few years!

So anyway, that was just a quick update. We'll see how it goes...

Amarpal

All the best with surgery in June. I have always had the highest regard for Dr Ramaesh, and I know that he would not have given you anything but the best professional advice.

So exams in May, surgery in June and back to slicing and dicing cadavers in October?

Andrew

Hi Amarpal,

I had a lot of problems with my lenses popping out. especially the right eye, as they couldn't get a good fit. piggy backs were wonderful for me, and i have as a result been able to do many active things, which i wouldn't be able to do if i was worried about the lenses falling out all the time.
i definately believe the soft lens helps the hard one 'stick' to your eyeball.

Hi Amarpal,

I too use piggy back lenses from time to time when my RGP lens rebs my cornea. I dont have to do it too often but it is always useful to stop some pain and increase wear time.

I also use what my optom refers to as a "reverse piggy back" where the RGP lens is loose or if i need to make sure that the lens definately will not fall out.

The method is to wear put in your normal RGP lens first. Once that has settled, i put in a low/no power soft lens (usually a monthly disposal as i think they have better oxigination?) over the top of the RGP. This has the effect of anchoring the hard lens under the soft lens and the vision quality i get with it is actually very good. I can see the difference in my eye and notice when looking in the mirror that the RGP lens sits far more centrally on my eye.

Its not advised to do this for long periods, which is why i only do it for sport. it is also important to watch out that the RGP is not overly rubbing the eye. However it does allow a great deal of flexibility in doing things which may be difficult with standard RGP's that are loose or do not like to stay in. Checking on your oxygen levels and using the right lenses is important i think.

Don't know whether you may find this useful from time to time but it may be worth considering.

In relation to the Flex Edge lenses, could you post some more info on the manufacturer. I have been looking for Hybrid type lenses or RGPS with a soft skirt on sale in the UK for months without much success. I would really appreciate it if you could give more info on the name of the lens and as much detail as you have.