UK Keratoconus Self-Help and Support Association

Hi Everyone,

I am a relatively newbie on here. I was looking for some advice or answers about sclerals. I have been reading up on them and want to try them. I 've had KC since i was 16'ish so it has been a long time, coped initially with glasses and then there was no point wearing them. I didn't know why and neither did my optometrist, they never referred me to anyone. eyesight became worse and i developed hydrops at about 19 which left scarring, when the hydrops occurred i went straight to the eye hospital and the KC was discovered. The KC is thankfully in my right eye only nearly perfect vision in the left eye. after that incident i was told to attend the contact lens clinic where they tried to fit me with lenses and scratched the hell out my eye and was then told that wouldn't work. I was then told about rose key lenses piggybacked on a soft lens by a relative and introduced me to an optometrist that has fitted quite a few and they made a lens for me but it never worked either as the KC is too steep so it always shifted quite often painflly as it slipped over the point of the cornea (underneath the soft lens, fun times !!). I was then told my only option was a graft which i decided to cancel when there was only a month to go till my op was due, i felt bad but i know for a fact that the rejection rate is higher in asians which has been confirmed a number of time for me by various people. So i today i had an appointment with the contact lens clinic at glasgow uni and they were interested with my case as i only have KC in one eye and did all the measurements and so on and then said they thought that there would be no point in using a scleral lens as i have scarring on the eye and i have developed a squint as my right eye is no longer used so they couldn't do anything. I know it sounds like one long complaint but i when i did have the rose key lens and it was sitting properly my vision was vastly improved even with the scarring and the rose key lens was not powered either. The optometrist i spoke to at the uni spoke to one of his colleagues as he didn't have a lot of knowledge about sclerals and went to ask his collleague who never even seen me and passed judgement that it wouldn't work but a rose key lens might work (which doesn't make sense to me). I just want to know if there is somewhere i can go to get a scleral lens or if i am just chasing a dream.

Hi Amer, and welcome.
there is no reason why it should not be possible to wear a scleral lens after a hydrops, even with scarring present.
I've been wearing sclerals for over 30 years, and in that time I've had 4 hydrops-es, with varying amounts of scarring left, dates ranging from 1980 to 1999.
the issue with scarring is, though the lens may fit fine, if the scarring is bad, you may never get terribly good vision, because of the scar tissue inthe way.
You'll only really know that when you try it - but if the Rose-K gave good vision when it was actually in the right place, I'd say it was certainly worth a try.
Incidentally, I've been in the habit of wearing one lens at a time for years, and have the same symptoms - the eye that doesn't have the lens in "switches off" and then can point in any old direction looking like I've got a squint. However, if you get the vision corrected so you have good vision in both eyes, you can get them both working together and pointing the same way again. It may take a little time, and look rathr surreal and give a bit o brain ache meanwhile, but it can be done.
I have a graft last year (a very long story here!!!) and post graft, the grafted eye is very shortsighted, but in the earlier days, the vision came up quite sharo through my big powerful binoculars - well, so long as I didn't look at anything too far away, as the binoculars wouldn't correct for that much shrt sight. For quite near things, I could try to adjust each side separately and look through both - not entirely successful, as the each-side adjustment doesn't go far enough.
But on one day - when we had an office outing to Walthamstow dogs, actually! - I was pointing the binos at the Tote display board - being near enough to focus the grafted eye side on - and could see two sets of numbers at once. Swimming around relative to each other - closer, further again, up a bit, down a bit - and then suddenly them swum right over to each other and bingo! Just one set of numbers.
FOr a time, I could see one set of everything through the binos as long as a concentrated, and they only drifted apart when I was getting tired. By now, I can look throuh the binos with a lens in my own eye (not the grafted eye), maximum each-side adjustment, and see just one set of everything. Not a very clear one-set of everything, as the max adjustment each side isn't enough and the grafted eye is getting ever more astigmatic, but they do work together to give the fuzzy image.
The other question is where and how you get intouch with someone to fit sclerals in Glasgow or area. I'm hoping someone else may know about this and will chip in. I've no idea myself - but I'll try to email a friend who might and hope they'll come and chip in.
Rosemary

There are optometrists qualified to fit sclerals at Gartnavel. They will assess your situation and if they think that the scleral is the right lens for you, they are adept at finding the right fit for your eye.

Sclerals are not the best lenses for everybody, but for those who are able to wear them, they are no doubt very good lenses. My favourite lens of all time was a scleral that I wore briefly before I became completely contact lens intolerant.

All the best

Andrew

Moderator's Note: I have moved this string from 'Let off Steam' to the General Discussion Forum. I think that it is more likely to attract responses in its new location. Andrew MacLean

By not trying is never a solution.

Give sclerals a go. I have been wearing them for just over 4 motnhs now. Gradually the wear time is increasing but you have to be patient with them, as you do with any new contact lens.

I can now wear mine for 6 hours, before I have to it take it out for 20 minutes, give it a clean and then put it back in for another 4-5 hours wear. Incidenyally, is this somewhat normal with scerlals or will my tolereance increase over time?

thanks Andrew,

I was just so frustrated coming back from Glasgow Uni that day, I have spoke to Gartnavel now and need to be referred by my GP so i've got an appointment for that on thursday, so i should hopefully get an appointment with the contact lens clinic in about 3 weeks

Amer

What are you studying? We have at least one other member of the Scottish group who is a GU student.

All the best

Andrew

Hi Andrew,

I'm not studying there, I just went to the contact lens clinic there, but i will going back to uni this year, i'll be starting at paisley in the summer for night classes

I am glad that you are arranging a referral to the ophthalmology department at a hospital. We are well served in West Central Scotland by fine hospitals with excellent ophthalmology departments.

I know that they have good departments in RAH as well as Glasgow RI, Gartnavel as well as Ayr and other hospitals in the area.

Keep us in touch with how you get on with your referral.

All the best

Andrew

Hi Amer - are you having any luck getting referred?
dazzabee - 10-11 hours a day scleral wear so soon sounds pretty good to me, with only 20 minutes break.
But people do vary - some people can hoik a lens out, clean and relubricate it and stick itback in againa nd that's fine. I always find if I take one out, I need to ive it a good long rest before I put it back or it really complains (an hour or more, preferably more).
Clearly, 20 mintes break works for you, so that's great news for you.
Hey, we're all different......!
Rosemary

I am delighted with the effect that sclerals have had on my life. That doesn't mean to say they are right for everyone, because as you have said, all eyes are different. Like I said in my previous post, though, not trying something is never a solution.

Now where was that lemon cheescake I have been meaning to try since I bought it all of five minutes ago...

Note to dietician: If I don't try it I will never know the effect it might have.

Jay - dribbling