UK Keratoconus Self-Help and Support Association

Hi, im currently still going through the fitment period for my RGP's but to to be honest im not getting on too well with them (or so it seems).Is it normal for them to come out randomly ?
Im as fustrated as hell at them falling out then having to go through the whole stress of trying to get through to the eye unit (only open 2 days of the week) then hoping for a replacement to arive.Well so far no replacement for the last loss so got to go through the switchboard nonsense tomorrow to try and find out where it is.To top it off i lost the other one a few days later !

One dropped out at westminster tube station today and it was lucky i managed to "secure" the area it was in as the masses walked by but i managed to retrieve it.

At least im not paying for them yet but that isnt going to last forever as the fitment period runs out at some point.

Are soft lenses the only alternative and would they be as effective ?

The whole thing is driving me mad,i cant go back to glasses as the RGP do sort out my vision far more than glasses ever did but the irritation and fustration they cause physically and mentally is getting to be a joke.

Help

al69

I am afraid that the only way in which they can find out what sort of lens is best suited to your condition is by a process of trial and error.

They normally try RGP lenses first because they are usually straightforward to fit (well insofar as anything is straightforward with KC), they give good oxygenation of the cornea and they are not outrageously expensive. If they fail there are a lot of alternatives that can be tried: piggy back lenses (RGP over a soft lens), Hybrid lenses, soft lenses for KC etc.

None of these alternatives will suit everybody.

I know it is difficult, but I'd still suggest that you stick with the process.

Every good wish

Andrew

Hi al

Andrew's right -- there's no easy way of the optometrist finding out if a lens is going to be suitable other than for you to spend time trialling it. They won't prescribe something that is obviously rubbish. But getting a RGP lens to fit a keretaconic eye is always a compromise. Unfortunately it is the patient that has to do the discovery...

What I found helpful was to put a time limit on any new lens. I allowed three weeks for my eye to get accustomed to the latest design. That was long enough to give it a fair go -- but not too long that I was making myself thoroughly fed up by persevering with a lens that was never going to be right. Knowing that I didn't have to endure what might not be satisfactory for too long made the process easier by putting me back in control of events somewhat.

How are things for you today ?

Best wishes


Chris

PS Westminster underground -- just been through there myself... Of all the places to lose a lens ! Well done for managing to find it again !

Hi Al,

Longhoc and Andrew are totally right - it can take ages to get the lens right. I had a bad spell about 10 years ago now and went through a load of lenses before getting the right one which didn't pop out or slip off - which ironically turned out to be the inital one I'd had problems with when I originally tried it!

Just as a side note my eyes do tend to get quite dry and I use the refresh eye drops and I also found that helped stopping the lens popping out so much so that might be worth a try.

Cheers

Chris

Thanks for the responses. The problem im having is my line of work means im out and about all day and its a real pain when they fall out in in pretty inconvenient circumstances.Im a ticket inspector and checking buses without them isnt really possible.I even had one come out while checking a bus and wondered why all the customers were staring at me, it was resting on the bottom of my eye.
Another time i had a hostile situation and the rgp has moved up around the top of my eye, pure agony right when i could have done without it, especially with mr aggressive being a twat in front of me !

Ive started using eyedrops and found that can help (something i discovered from a thread on this excellent forum) but i also find it a double edged sword as it can make them move about more.

Currently ive had the lenses since september and only had one change of the lens at the beginning of january, the rest have been replacements for lost ones.I would love the chance of trying new ones every 3 weeks but that wont happen as im on the nhs with an external consultant who is only in 2 days a week.The follow up appointments are always for 3 months after.

Admittedly the other day when i posted i was having a pretty bad day,my eyes were sore, red and i had to put up with this all day.Not pleasant at all which at least the people of this forum fully understand,no one else around me seems to get it.Im sick of trying to explain to others why i cant just have it lasered or wear glasses etc, it seems everyone is an eye expert at times.

Oh well just got persevere i suppose

Hi Al69,
How often are your lenses falling out? Your posts imply it is a very frequent occurrence which could be because the fit is not right. They really shouldn't fall out that frequently. It may be worth seeking an earlier appointment (although I suspect you've already booked the 'next available appointment').

I agree with Chris (longhoc) that a lens needs a fair trial before rejecting it. Although in most cases that means reverting to the old worn out one and starting to wear the new one again before the next appointment. Over the years I've sometimes said at an appointment that although I'm wearing the lens to the appointment I don't wear it day-to-day because either it pings out when glancing quickly from side to side, or although I can read the 6/6 line in the clinic in practice the vision is far less. So optometrists are used to us saying that unfortunately the lens they spent ages fitting at the last appointment was not working as expected.

So yes, getting the right lens can take time - but most optometrists who fit KC regard us a challenges they want to solve.

As for glasses if you can do keep a pair for back up. Even if its only for finding your way around your own home as this can help give your eyes an occasionally rest. And yes people will always ask why you can't wear glasses, or suggest that you can't possibly need sun glasses as the sun's not that bright, and when you start to need reading glasses as well they suggest you give up with lenses and get varifocal glasses!

Lia

Ok now I know everyone is saying RGP blah blah blah

But
Have you had your eyes tested prperly and fully including latest equipment?

Have a look at 2020 optical Store in tottenham court road and see what they do for an eye test.
Was this done whenyour opthalmologist tested you?

If not spend the £20 and have another eye test

http://www.20-20.co.uk/eye_examination.htm

ps I hope they have the South African trained person in when you book your appointment as he was the oly one that could get the machine to correctly read my eyes. The machine will, from my experience, give you a better glasses prescription than an optician swapping lenses - no disrespect to Opticians but this type of technology can measure thousands of point verry accurately as opposed to "which is better lens A or B"

I have no ties to this operation other than once having my eyes tested there. Please be aware their prices for lenses and frams are Scary so take the prescription elsewhere for a better price

Ian