UK Keratoconus Self-Help and Support Association

Hi, i have a progressed state of keratoconus & have had a graft on my right eye & just on the waiting list for left eye just before christmas last year my conatct lens specialist decided to try a hybrid lens as the ngp lens was becoming troublesome. seemed ok for a while but had recently started getting a bit irritable, then i noticed a split appearing from the edge of the hard area out into the soft skirt, i could imagine a split appearing from the outside edge of the lens going in to the middle but this surprised me.

i am not happy as it has had less than 6 months use & they arent cheap. Has anyone else had problems like this i would be interested to know. Anyway gripe over for now Thanks

matty

Welcome to the forum. In your place, I'd be going back to my optometrist with a complaint! 'this lens has split, it is a split lens' ... Maybe you'll get another one free.

I take it that your optometrist is not based in an NHS hospital, or your lenses would be dispensed at the supported price of circa £52 each.

All the best

Andrew

Hallo.
Not urprised you're a bit cheesed off about this...
I've never worn the hybrids myself, but Ihave heard reports from elsewhere that the "vulnerable" area where they can start to have problems with where the hard area and the soft area join. SOunds like you split started there, yes?
Rosemary

I have been wearing a type of hybrid lens and was concerned about being rough with them (or catching the soft edge in the case) and doing them some damage where the soft and rgp sections met. I asked my CL fitter about this and she said that they were pretty hard wearing and the only time someone would have a problem (and one of her patients had done this) was if the lens was allowed to dry out at all. Could you have caught the lens in the storage cases at all?

Thanks for your replies with regards to cost of lens my optometrist is part of an NHS scheme where discounted lenses are available but only once per year apparently. Getting the lens caught in the holder has always been a concern and as far as i know i have not trapped the lens so who knows. I'm guessing that they probably are quite susceptible to damage & in some ways i would rather get the graft done then i can be contact lens free! anyway it's frustrating as i am now struggling with out a lens.

Oh does anybody know if keratoconus suffers are able to receive free eye tests etc? not really thought about it before but it occured to me that with the debilitating nature of the condition it would seem fair. Thanks again

Matt

Errrr, Matt,
I hate to say this, but having a graft will not make you contact lens free!
The intention is that a graft will give you a more regular eye surface that is easier to apply correction to, in order to give you better visual acuity (read more f the eye chart) than at present.
It is VERY unlikely that you will get this good visual acuity uncorrected.
the figures I was quoted pre-graft were that about 50% of people still wear contact lenses after the graft, and about 40% end up wearing glasses.
10% don't - this presumably includes those whose grafts don't work out and who give up on correction, as wella s the lucky few who decide not to bother with lenses or specs as they can see "well enough" for what they do.
So please, please don't opt for a graft to get rid of having to wear lenses - it doesn't work like that!
As regards eye tests - I get calle dup for hospital appointments and they test my eyesight, and all sorts of other things there. No eye test charges.
Incidentally, if your optician is really part of the NHS scheme and is charging you NHS lens charges, that "one per year" SHOULD mean that, if your lens breaks during the first year it is replaced all for the same charge. And theoretically, if it needs refitting inthe first year.
That is, it isn't one LENS per year, but one CHARGE per year. Well, one per eye.
SOunds like you need to ask wht your optician is up to there!
Rosemary

In Scotland, all eye tests are free.

Andrew

Hi rosemary i dont mean to be funny maybe i didnt put myself very well. i am not "opting" for a graft in order to stop wearing lenses & i know how it works thanks anyway. I am on the waiting list as the keratoconus has progressed to a stage where the lens is becoming intolerable, with the posibility of ulceration which happened to my right cornea. i have had a corneal graft on my right eye and the vision for this (which is ten years old & going strong!)is corrected with glasses - which given the chance i would go for every time! I would consider using lenses again after the graft as i would hope that they wouldn't be as troublesome after having a graft.

I must admit i am not happy with my optometrist & will be questioning his reasoning on having to pay full price for a new lens.

Thanks again

Matt

Matt

Your story is familiar to many of us: years of contact lens use brings us to the point where our eyes are scarred through contact lens use and possibly marked by posterior scarring due to hydrops. To crown it all we get to the point where we can't tolerate a lens for any more than five or ten minutes.

In exactly that position I agreed to go ahead with the grafts that I had been postponing for years.

Now grafted in both eyes, I am back to wearing a lens on my left eye, although my right eye is good with specs.

Every good wish

Andrew

Hi Matt - and sorry; didn't mean to teach my grandmother to sup eggs.
Glad you know the opres, as it were - some people arriv ehree thinking a graft will give them perfect eyesight, no more contacts, no more specs, brill.... and are sorely disappointed.
Rosemary