UK Keratoconus Self-Help and Support Association

Hi folks,

I am just about to be fitted with a contact lens post corneal grafting. My experience of hard lenses isn't great and pre graft I was unable to tolerate them at all.
My understanding is that my local NHS contact lens clinic are planning to try these again. With my previous ulcers/abrasions and the pain/discomfort as soon as they were inserted, you can understand that I would rather look into all the options as to what lenses and I am interested in what opinions you all have?

I look forward to reading you comments.

Warmest regards.

Paul

Hey Paul - just wondered what your graph experience is - my daughter needs one very soon.

Kind regards

libby

Hi Paul

I will have had my graft three years ago on May. While I had some of the sutures in the hospital gave me Daily disposables. Very comfortable. Only problem was I developed a cataract ( because of the steriods) so they took the sutures out before they did the cataract op. Unfortunately that left me with some astigmatism so soft lenses aren't any good now . I get very good results with glasses 20/10 on a good day. They also fitted me with a RGP. Vision is out of this world but after 5 or 6 hours I have had enough so take it out. Not a drama as I can go back to the glasses if required (often don't bother with anything as the visions not bad uncorrected). Got a feeling the RGP issue is down to dry eyes. Got an appointment in a couple of months so they are going to have a look at it.

Ian

Hi Paul - maybe ask about piggybacks? In my experience I get the comfort and abrasion avoidance of softs with the acuity of RGPs.

Your right Grant piggy backing is very comfortable I tried it pre graft for a few months. Not sure if it's suitable post graft though. The problem with two lenses is it cuts down the oxygen supply to the cornea. This can lead to blood vessels growing into the cornea (Corneal neovascularization) and patients are normal monitored closely for this. Pre graft it can effect your suitability for a graft. Post graft it can cause rejection episodes (a healthy cornea has no blood supply). I know modern lenses have good oxygen permeability so I may be wrong (and more than happy to be wrong if it's a suitable option)

Ian

GrandPaClanger wrote:Hi Paul

Unfortunately that left me with some astigmatism so soft lenses aren't any good now . I get very good results with glasses 20/10 on a good day. They also fitted me with a RGP. Vision is out of this world but after 5 or 6 hours I have had enough so take it out. Not a drama as I can go back to the glasses if required (often don't bother with anything as the visions not bad uncorrected). Got a feeling the RGP issue is down to dry eyes. Got an appointment in a couple of months so they are going to have a look at it.

Ian

What the hospital probably mean is that they don't know how to fit soft lenses for people pre or post graft. I am appraoching 25 years post graft and have high astigmatism in my right eye. It was 16 years before I had aneed to go back to RGP's which I only wore or about 4 years before the wear time tailed off through what I thought was dry eye but was actually an intolerance to the RGP material, eventually I could only tolerate them for an hour on a good day. For the past six years I have been wearing soft lenses for KC, started with Kerasoft 3 and now on the Kerasoft IC. I get better vision than I ever got with RGP's and have no problem with dry eyes.

On average I wear my lenses 16 hours per day and a bad eye day is wehn vision drops from 6/5 to 6/6. Without my lenses I can't even see the eye chart.

Hi Gareth

To be fair to the hospital they didn’t try a soft lens after all the sutures came out and the cataract was done (I still have a couple of compression sutures in after the astigmatic keratotomy they did with the cataract). They have been very good and when I spoke to them they made an appointment for me to go back but we are on NHS waiting times. I’ll see what they come up with but may look at going private if they can’t come up with anything.

GarethB wrote:

GrandPaClanger wrote:Hi Paul

Unfortunately that left me with some astigmatism so soft lenses aren't any good now . I get very good results with glasses 20/10 on a good day. They also fitted me with a RGP. Vision is out of this world but after 5 or 6 hours I have had enough so take it out. Not a drama as I can go back to the glasses if required (often don't bother with anything as the visions not bad uncorrected). Got a feeling the RGP issue is down to dry eyes. Got an appointment in a couple of months so they are going to have a look at it.

Ian

What the hospital probably mean is that they don't know how to fit soft lenses for people pre or post graft. I am appraoching 25 years post graft and have high astigmatism in my right eye. It was 16 years before I had aneed to go back to RGP's which I only wore or about 4 years before the wear time tailed off through what I thought was dry eye but was actually an intolerance to the RGP material, eventually I could only tolerate them for an hour on a good day. For the past six years I have been wearing soft lenses for KC, started with Kerasoft 3 and now on the Kerasoft IC. I get better vision than I ever got with RGP's and have no problem with dry eyes.

On average I wear my lenses 16 hours per day and a bad eye day is wehn vision drops from 6/5 to 6/6. Without my lenses I can't even see the eye chart.

I wonder if I'm being too hard on Kerasoft. I'm not the worst sufferer here, my keratoconus is mild... with the Kerasoft lenses I can read fine (bottom line on the chart with my right eye!) but the shadowing and double vision I get is ridiculous, I really don't wanna have to live like that. Am I better off just accepting that's it for me or is it worth trying hybrid/RGP lenses?

Unfortunatly there is no single solution that works for everyone.

So rather than give up on one lens straight away, try and get the fit refined further and then if the issues persist then try the next lens and see how they compare with the ones already tried.

When you get the shadowing, is it when you look at the chart with just one eye or is it only apaprent when you see binocularly?

I get very slighttreaks when I look through one eye at a time under certain lighting conditions but with binocular vision they disappear as if the issues with one eye cancel out the issues on the other.

Where I have double vision in the pas seeing binocularly when the vision in each eye is perfect has been put down to one eye becoming lazy and they aren't used to workig together.

To be honest I see it whether it's through one eye or both. Maybe on the short contact test I would say it was slightly worse when looking just from one eye... but as I said, I was told by my optometrist that the vision through soft lenses and glasses would be very similar. With the glasses I can read fine, but I still get shadowing (when looking through both eyes of course) and it's looking at lighting where it really shows.

Seeing as though I'm currently going through a change from private to NHS, I'm just trying to decide on whether to carry on with Kerasoft fitment (had one fitting already, right is almost perfect he said, left not so much) or change to hybrids...

I'm sure you all know this already but this is what I see currently through my glasses...