UK Keratoconus Self-Help and Support Association

Out of all the lenses I have worn (corneal rgps & with piggyback method, softperms, rose k, kerasoft, semi-limbal, flex edge) the only lens type I have acutally felt comfortable with was my softperms. As my KC advanced these were no longer suitable as they only came in limited diameters. The lenses I am currently wearing are called flex edge which is a trial lens made by jacl. Its an rgp lens where the edge is thinner making it more flexible, similar to a softperm but the whole lens is made from rgp materials.

The problem I am having is that the lenses I find comfortable to wear are usually ones which are less mobile, therefore slightly a tight fit. When they are slightly looser they are fairly mobile, especially when i blink. This is when I really find wearing the lens uncomfortable. It would be ok for a few hours but at random times it would feel really uncomfortable and my eyes become fairly watery, more watery at other times making the lens even more mobile and therefore more comfotable. This is another reason why I do not like to wear artificial tears, even though my eyes may feel dry.

I have tried using systane but doesnt help a significant deal. I would carry on wearing a less mobile lens where the fit is slightly tight but ater wearing it continuously for 4-5 days for about 8-10 hours each day my eyes feel sore and so cannot wear a lens in that eye for another 3-4 days. So its either this or weaing a looser lens which I find uncomfortable a cant tolerate as well.

I dont know if its just me but as my KC is prgressing I really cant tolerate lenses anymore. I was refitted with rgps again 2 months ago but as my cornea is alot steeper than before the lens was made a much looser fit and I really could not wear it for more than 10 minutes!! I could at least wear them for 5 hours before.

Basically the remaining lens left for me to try are probably only sclerals. I have not been fitted with these as my CL fitter as not really fitted many KC sufferes with these so has been fairly reluctant. As I've never worn these before, giving any of your experiences of wearing sclerals, would they be suitable for me to wear given my situation above. Are sclerals fairly mobile, do they move around when you blink or move your eyeball. I would guess that they would feel more comfortable than the smaller corneal RGPs as the edge of the lens does not really come into contact with either lid during blinking and given the size of the lens would not really be as mobile as corneal RGPs. I also feel as though I have dry eyes, and my tear dispersion time is quite low. If any of you who also have fairly dry eyes, do sclerals still pose slight problems where systane cant help with and how do you try to overcome this..

Thanks in advance for the advice

Asif

Asif

Your story sounds so familiar. I wore lenses for over 20 years. Over the time I tried different sorts. roseK, RGP's Sclerals etc.

In the end it came down to the time when I couldnot wear any lenses at all, and then I went for surgery.

fitting sclerals is quite specialized process. Would you ba able to go to another optometrist for this? I know that the scleral is a good lens that can be comfortable to wear and give good sight.

All the best.

Andrew

Asif,

What you have posted is what I have been through in the past and to keep the lens wear acceptable per eye, I would wear them for 5 days and have the weekend to rest the eyes. I would also have to wear one lens at a time so I could see long enough in the day. 12 hours is the minimum I need to see, so six hours per eye and a break at lunch. This meant when I changed from vision between left and right, my brain had half hour to reset itself while 30 minute lunch was a blur.

Have you tried this?

Takes a couple of weeks to get used to.

What work environment do you work in?

Mine is low humidity, so every couple of hours I have to take my lenses out and use more Systane.

Asif

I also agree, Soft Perms where by far the best lenses I wore in terms of comfort and vision, closely followed by Sclerals......

I think you have the option to try sclerals....or do some of the things Gareth suggested.

J

Gareth I tired that and was doing so during the whole of my first year with my softperms, it was the only way I could get by with suitable vision for most of the day. As they were comfortable I would wear them 7 hours in one eye and then wear the other one for another 7-6 hours. I cant do this anymore because one of my eye has bee grafted.

I have tried wearing the lenses for 4 days but would need another 3-4 days for my eye to feel better, so cant by by through a regular week.

I currently have a job in a call centre between studying. I actually started this Monday. The air feels horrible, really dry and sticky with ac on most of the time. My lenses do tend to dry up but dont like taking lenses out as the 1st hour the have been inserted they dont really feel very comfortable as they do later.

What you studying Asif?

Optometry. After I was diagnosed with KC I had a fascination with eyes, how the eye works, eye conditions and diseases etc. Whenever I would go to the contact lens clinic I always wanted to know what they were doing and what they were talking about. I ould like to get into contact lens fitting and actually help keratoconic sufferers aswell as other eye conditions as I know what its like.

Sclerals are very *un*-mobile, not least ecause they don't have very far they *can* move!
I was actually half way through your email and thinking "why not try sclerals?" before you mentioned them.

I've always worn sclerals, so can't really compare with any other sort. When I first had them, i could feel the edges when I turned round and looked over my shoulder suddenly, but I soon got used to that.
If they fit well, they shouldn't catch on the eyelid, and are certainly not easy to "blink out".

FInding a fitter can, indeed, be harder for sclerals than other types.

I have had problems with my eyes drying out - but only under horrible air conditioning, and if I'm outside for a long time in fresh air and wind. I've never found an answer to that - we "solved" the air con problem by moving my office out to a Portakabin! - other than accepting I can't read small print in the open air all afternoon. I personally didn't find artificial tears anything other than sticky, and if I take a lens out to re-wet it, i have to leave it to have a good rest, and can't just clean, rinse, wet and add mmore saline and bung it straight back in, or it protests vehemently. But that may well be just me, rather than a feature of wearing sclerals.

Sclerals can fit well onto steeper cones than can cope with corneal lenses, and these days are normally made of RGP materials so "breathe" without needing holes or slots in them.

I do agree, however, that there's a difference between a) what the optom may think looks like a 'good fit'; b) what feels comfortable; and c) what you can see best out of. And that what feels comfortable to admire the landscape may be anything but comfortable if one has to keep screwing up one's eyes and tilting one's head to read the computer screen.
Rosemary

Hi Asif,

Like yourself I went through trying quite a number of lens methods before being total satisfied with Sclerals. I couldn't use soft lenses because everytime I blinked they rolled off my eyes, then I used Gas Permeable lenses which because they didn't cover my whole eye used to scratch my eyelids and cause severe irritation.
After this we tried the piggy back method which still caused severe irritation, this is when I was introduced to scleral lenses. Initially when I saw them I thought that there was no way and no amount of money you could pay me to get me to put them onto my eyes! But after I saw the difference they made to my sight I decided to persevere with them.
It took me about a month before I got use to putting them onto my eye, but once they were in I could hardly feel them although I felt as if my eyelids were being slightly stretched. It has been nearly 2 years since I've been wearing my sclerals and out of all the methods I've tried this is the one that I'm most happy and comfortable with.

I hope this helped
Clarisa

When I first got my single scleral the fit was not perfect. This problem was solved by the lens being returned to the manufacturer who drilled a little hole (called a 'fesestration' from the Latin for 'window') in the lens next to the optical part.

With this fenestration in place I was able to get some benefit from the scleral until it, too became impossible to wear. The point is if things do not seem perfect at first, do not give up. The end of the road has not been reached until you actually arrive at the end ... of ... ... the ... ... ... road.

Andrew