RGP lenses - problems

[Kris]

Hi All,

I was told last year that I had bilateral Keratoconus and have been referred to get RGP lenses fitted.

I have been having issues with the lenses, my vision is just not how it should be. Apart from blurring, I have problems with strong ghosting (sometimes on the point of double vision) for things that are further away than 20cm from my eyes. At about 20cm I see perfectly!! I am now on my second set of lenses and the distance viewing has become a bit clearer, but the close up is now distorted... According to the contact lens specialist, my Keratoconus is atypical and instead of forming a 'cone', my cornea appears bumpy/wavy.

Has anyone else had a similar experience and was able to get a solution with RGPs?

Also, I have huge issues with having dry eyes with the lenses in. The second set of lenses are more comfortable as they are bigger (I have big round eyes (pretty ones!) and the lenses kept catching on the edges) and there is a smaller area that can get dry as more is covered by the liquid under the lens. It is still dry though and will even start a dry 'burning' feeling the longer I wear them. I am going through eye drops at a crazy rate and it's really getting expensive as well as frustrating.

Does anyone have any advice or tricks?

Finally, when I take out my lenses, my vision is absolutely awful and my glasses are barely any help at all. I doubt there is anything that can be done as my vision can't be corrected with glasses anymore, but how does everyone cope with that??

Thank you in advance for your help, it is so great to speak to someone with experience as the hospital hasn't been much help at all!

thanks,

Best, Kris

[Andrew MacLean]

Hello Kris and welcome to the forum.

When we put on RGP lenses they mould our corneas slightly, so that when we take them off again our glasses don't correct our vision as well as before. After an hour or so, things return to normal. Sometimes the effect works in the opposite direction, so that when the lens comes off the wearer's vision is very much improved.

I guess that knowing that this is likely is the first step to learning to live with the effect.

Every good wish.

Andrew

[Manby76]

Hi there

I also have very dry eyes, which make my RGP lenses unwearable. However, my vision seems to have deteriorated, and since I work with computers and numbers I really need to start wearing them again, but I'm caught between the devil and the deep blue sea! I need my lenses to see, but I can only wear them (not very comfortably) for an hour and then I have to rub my eyes so hard and my glasses then don't seem to work as well. I use eye drops when the lenses are in, but only seem to get momentary relief. My consultant says that my KC isn't that bad and that at my age it should be stabilising, and that I will have to live with glasses - but that doesn't really help with my quality of life, and I think it's getting worse.

Went to a christening today and didn't recognise my own brother when he walked through the church door! My OH tried to tell me that it wasn't me and that it was a long way to see - think he was trying to make me feel better, but I know it is my KC, and that my glasses are no longer effective. I have been thinking that I need to go back to hospital and maybe consider scleral lenses, but I'm not sure whether they are available in my area.

It's great to know that I'm not the only one suffering - sommetimes you feel so alone, as it feels like noone else understands!

[Anne Klepacz]

Hello Manby and welcome to the forum,
Not everyone can wear rgp lenses, but there are quite a few other options these days - not only the scleral lenses you mention but also soft lenses made specially for KC, hybrid lenses (hard in the middle, soft on the outside) semi scleral lenses and piggy backing where you wear an ordinary soft lens underneath an rgp to make it more comfortable. Not all hospital clinics offer all those options, but it's certainly worth going back to your optometrist to see whether another type of lens might work better for you.
If you'd like more info on the options, just e-mail your postal address to anne@keratoconus.group.org.uk and I'll send you our information booklet.
Anne

[GarethB]

I got to the point that I could only wear RGP's for an hours uncomfortable wear despite using lubricating eye drops for dry eyes every hour or more!

Eventually I tried soft lenses for KC and despite being post graft, the lens prescription I have is similar to that of someone with quite advanced KC and the lenses I cave can cope with even more advanced KC. Ask your optomotrist if you can try Kerasoft IC lenses, they worked for me despite initialy being told by the hospital they would do nothing for me. I basically asked them to prove it because all the information about the lenses suggested they had a chance of working. Now been using soft lenses for 5 years now, I can wear them all my waking hours, I use computers for atleast 8 hours per day, the comfort is so good I am unable to feel the lenses, I only know I have them in because I can see and the level of vision is better than I got with RGP's when they were tolerable.

Unfortuantly fitting us with lenses is much an art as it is a science because the machines used to measure our eyes are designed for a normal eye and so the software is unable to give the full information needed to fit a lens. Most optioms only look at the eye through a slit lamp from straight on, but much can be learnt about what lens is best to fit and where problems are if they just move it to the side and look at the eye from the side. Observations are just as important, possible more so than just taking readings.

Search the forum for my name and Kerasoft and you will find how I have got on with the Kerasoft IC lenses over the years.

[Kris]

Hi all,

thank you so much for your replies and kind words of encouragement and advice!

Manby67, it is nice to know that it's not only me who has to deal with dry eyes and uncomfortable lenses, as most people with RGPs I've spoken to are perfectly happy with theirs! I have now gotten a different set of lenses, which are much larger and seem to help the dryness a little, but it's still not good enough for everyday long use.

I am very sorry to hear that glasses are not helping you and are struggling with your KC. I am also meant to have 'mild' KC, but I've had to change jobs (as I can't drive long distances without the RGPs and with them I'd have to stop for eye drops), reduce my working hours and generally adapt to seeing everything blurry. I am waiting for the moment when I can actually see clearly and in focus for the first time in about 3 years!

It is very difficult for everyone else around me to understand because KC isn't something they can see and I behave no differently than anyone else, but still have to adjust. So don't feel alone, we all know how it is! If you think your KC is getting worse and the glasses are not working, then talk to your OH or GP and see that new tests are done and your options are explored (be it different treatment options, or a referral to a different hospital/specialist - don't be put off by them! I did that initially and just accepted what I was told, but now I am trying to explore other avenues as I am not happy with the result! I hope you can get somewhere too and improve your quality of life and generally make you happier!

All the Best,

Kris

[Kris]

Hi GarethB,

thank you for your reply and advice, I will make sure to ask the specialist about the Kerasoft IC lenses!

I am able to wear the RGPs for quite a long time, up to 12 hours a day, but they are incredibly uncomfortable and dry and there is no way that I can keep this up for very long or all the time in everyday life.

I am currently trying to see a different specialist, as the one I am seeing seems limited in how they can help (or is unwilling to try something else, who knows), so hopefully they may be able to offer different solutions.

My CL specialist has actually told me that my eyes are not easy to spec lenses for, as I don't have the typical appearance of KC with a cone shaped cornea, but it's 'wavy' or 'bumpy' and therefore very irregular. Perfectly fitted lenses might be a good solution to this!

So thank you for your advice, and hopefully I might have some results soon!

Best,

Kris

[GarethB]

My CL specialist has actually told me that my eyes are not easy to spec lenses for, as I don't have the typical appearance of KC with a cone shaped cornea, but it's 'wavy' or 'bumpy' and therefore very irregular. Perfectly fitted lenses might be a good solution to this!

To be honest any good lens fitter should be able to fit a lens to an eye such as you describe as wavy is what most corneas post graft are as they are never perfectly flat around the graft margin and you get little creases intruding in to the donor graft.

My fitter says it is like fitting three eyes, the host cornea that remains, the donor cornea in the middle and the bit inbetween.

I am able to wear the RGPs for quite a long time, up to 12 hours a day, but they are incredibly uncomfortable and dry and there is no way that I can keep this up for very long or all the time in everyday life.

This generally a sign something is wrong, the eyes become dry because the harsh edge of an RGP lens helps to disrupt the tear film so reducing the lubrication between the cornea and the RGP lens so rubs the cornea so making it more uncomfortable. The same happens with the eye lid so it too can become sore. Over about 4 years this lead to me becoming sensitised to RGP lenses and marks were being left by the lens on the cornea that if I had persisted with the lens would in all probablity have lead to cornea scaring, infection or rejection of my grafts.

My soft lenses are the same material as is used to make bandage lenses that are used post corneal surgery.

[Whiteshepherd]

I had worn hard lenses first back when i started wearing contacts prior to torics and then after lasik I developed ectasia from improper surgical error. But now I wear a mini scleral on the left eye and an rgp on the right eye. My eyes have alwasy been dry and when I wore toric soft lenses I could basically stay up all night by using Refresh eye drops or saline solution in a bottle about every fifteen minutes. Now after being diagnosed with ectasia and wearing rgp lenses I have to shoot fluids in the eyes sometimes about every five minutes to keep the eyes from fogging up and drying out. I would try using saline solution in a small bottle for cost but Refresh Contacts work very well if they are also in the UK.

Brad