UK Keratoconus Self-Help and Support Association

Hi all

It has now been 1 month since i was diagnosed and I have just received my appointment to see the contact lens specialist at Sheffeild Hallamshire eye clinic.

This will be the first time i have ever seen a contact lens let alone put one in my eye.

I am sure i will have hundreds of questions on the day which i will forget to ask, but is there anything i cant afford not to ask or try while i am there?

I have been told the appointment will be at least an hour so it should be more useful than just being told by the consultant that i have KC and then hurried out of the door.

Thanks for all replies they are greatly appreciated

The first appintment with the contact lens specialist will be to determine which type of lens is appropriate and to detremine the prescription.

You will be tested ti see what vision you have uncorected and a topographical scan of the cornea will probably be done. This helps decide which lens is best to try first.

It will be odd if you have not had them before which is why they allow an hour. You may be sent back to the waiting room to allow your eyes to get used to the lens before re testing your sight.

It is very important to describe how the lens feels in your eye regarding comfort and the optom will be able to allow for the new senstaion. They will look at how the lens fits on the eye and if the lids push the lens about. Only you know what the lens feels like when you blink. Be honest with the optom and strive for the best vision. If the letters are slightly blurred say so, just because you can read them is no need to accept as perfect.

Will add more later.

Mark

I guess I could list soo many questions here about various things, but as its your initial visit I am sure you may be abit nervous and anxious! Especially if you havent ever had a lens inserted in your eye!

I think you may want to focus around

a) lenses which they are trying on you
b) what happens if the lens causes an adverse effect
c) what happens if the lens no longer fits (KC progression)
d) costs
e) best practice on lens care
f) time between you being seen and the contact lens dispensing
g) how far advanced is your KC?
h) confirm legal requirements for driving etc
i) explore soft and hard lenses options and ask them about this! If you have mild KC you are a good candidate for Kerasofts and Soflex lenses!...which are a godsend if you ARE at early stages of KC!
j) ask them which lenses they specialise in for KC management


These are just a few! the list is endless to be honest!..But one thing I would say is ASK ANYTHING....and dont just take their word for anything.......but at the same time respect them as they should know what they are talking about (he says).

Fitting Keratconic eyes is a skill and requires experience; and unfortunately there is no sure fire way of fitting the lens as each cornea is different in shape and irregularity.......

Hope that helps

No need to add more, J must have a day off and put the Q's up already

HA! You can tell when Im working from home!..

great list jayuk - i'm curious what a kerasoft lenses; i've heard of sclerals which my optom says i don't require so i've always worn rgp and they're done by no 7 lab.

as both gareth and jayuk when you've got the lenses in describe the feel, vision, etc
e.g itches at the top, it feels like there's an air bubble, i can see there's something there but can't read it, i can read it be there's a halo of light round it, if i look up it feels like the lens is going to fall out,

i always feel daft the way i describe the lens to my optom, see examples above, but he assures me it really does help him to get the best fit and vision for me; i worn them a lot of years so i've learnt to laugh about it now but when i first started i would just put up with bad fitting lenses because i wouldn't speak up, felt embarrassed to admit i couldn't see something only 6 foot away.

ask them to show you the different types of lenses, even if you don't land up with that sort, it helps to understand how they're different, etc. they will feel strange when first put in, may make you blink more, as your eyes get used to tolerating something in there ,hence lots of sitting round in waiting rooms

Carol

I answer the Soft Lens question in another Post so as not to deviate from Marks queries......

As I firmly believe that Soft Lens for KC is now a viable solution for a number of KC patients....

J

thanks jayuk and sorry mark i wasn't trying to pinch your post its just as you see the questions never stop with KC

Carol suggests to ask the hospital people to show you the different types of lenses:
Aha! And if they show you a scleral lens, you'll have a pink fit!
Everyone does.
"People put **that** in their eye????"
They're about the size of a 2p bit (but not flat, obviously).
Yes, we do, and yes you get used to them.
Rosemary

yes but on seeing the size of the schleral mark will appreciate how small the rgp lenses are.

i'd worn rgp's over 20 years before i even knew there was different types other than rgp and soft, i found actually seeing these different lenses totally fascinating and also when i started wearing lenses i was only 14 and the optician at the time wasn't very sensitive on introducing me to lenses; put them on the table in front of me and said here's your lenses practice putting them in like this, then taking them out; when you can do it ok go home and i'll see you in 2 weeks!

so my thinking on it was not only ask questions but if possible ask to be shown the lenses, see the machines first, etc. wasn't meant to frighten him to death honestly