Thorny questions about expert advice...

[Lynn White]

Yes the thingy whatnot is indeed this week!!

[Lia Williams]

I've been lurking - so as someone who lurks I thought I had better explain myself.

I have been a member of the forum for some time but this is only my second post.

I've worn corneal contact lenses for over thirty years - the first 15 years for vanity, myopia and possibly mild astigmatism.

In 1990 I was told by an opticiam that my eyesight was 'up the spout'. That was my lowest point. She did however refer me to her colleague in the next town who fitted me, after several attempts, with some lenses which I wore happily for several years. I knew I'd been one of his challenges, but I was not aware of how much a challenge my eyesight wasa until I moved house and need to find a new optician.

I found an independent optician who was experienced in KC - but after three attempts on my right eye and two on my left he was unable to fit me successfully and gave me my money back. (He did have an advert in the window "Your money back if your contactlenses aren't the most comfortable you've ever worn"). This was another low point - an expert had told me my lenses needed to be replaced - but he was unable to do so. I asked him whether I should be referred to the eye department of the local hospital - but he admitted that he was their expert and he didn't have the fitting sets to be able to fit me.

I then asked my GP to refer me to Moorfields and went for an appointment six months later. They also had several attempts to fit me, but a year after I set out to get a new pair I finally had a new pair of lenses. I've been with Moorfields now for nine years and although I'd prefer to be able to go to a local optician rather than spending a day going to London thay do prescribe me with what I need - a pair of lenses that don't ping out, give me 6/6 vision and can be worn for 15 + hours per day.

How bad is my KC. Difficult to say - beyond local specialists but not too much of a problem for Moorfields. I don't regard myself differently from anyone else who wears lenses for say myopia. It's just that my lenses are bespoke.

Lia

[GarethB]

Lia,

Your post made interesting reading and despite your low points you still appeared to have remained poitive.

It does make a refreshing change to hear such a story.

Thanks

Gareth

[Lynn White]

Lia..

So glad you popped in!

As a professional, I can understand your original optoms problems. KC is not too difficult to fit.. if you have a lot of contact lens options at your disposal. This means a lot of fitting sets, which the big hospitals like Moorfields can afford to purchase and keep up to date. Also, fitting KC is a skill that needs lots of patients to hone - again, the large teaching hospitals provide that.

Once you got sorted, as you say, you just wear lenses like anyone else who is myopic.

Just a query here.. do you have back up glasses and if you do, can you see through them?

Lynn

[Andrew MacLean]

Lia

Thank you for posting.

All the best

Andrew

[Lia Williams]

Lynn,

Thanks for your reply.

When my eyesight became a challenge in 1990 the optician who first fitted me used to keep sending lenses back to the lab to be adjusted - and he commented that if only the lab was next door it would have been so much easier. Whereas the optician in 1996 was using fitting sets to base his prescription on a lens that almost fitted.

Yes I do have a pair of back up glasses. When I first started wearing lenses (in 1975) I found that within a few weeks images through my glasses were somewhat blurry. This was not uncommon - most of my contact lenses wearing friends had the same problem. It was always understood that one could switch back in a few days.

In 1997 (seven years after my eyesight became a challenge) I bought some glasses on the high street. As I hadn't worn glasses at all for years my brain was unable to straighten up the images - everything used to cave in at the corners - making me feel slightly queesy when walking about the place. The glasses have a power of about -7.00 whereas my lenses are about -9.00 and -11.00. (Although I know with KC there is not an exact correlation between the two). The glasses did however allow me to read without having my nose right inside the book - and follow a TV programme.

More recently I use my glasses for the first half hour of the day - and reading in bed at night. My brain has finally straightened up the images. The vision beyond reading distance is not very good (better than unaided) but not really suitable for even using the pc as the image start to separate. As my brain can now cope with the glasses I could get a pair with a stronger prescription as it had been backed off to let my brain get used to straigtening the images.

I do wonder whether I had mild KC in my teens. As when my glasses needed to be changed I always I remember that when reading the blackboard at school the writing used appear as if it had little lines on the top. Difficult to explain - but as if the letters were taking their hats off - rather than the image being slightly out of focus when a projector has not been adjusted properly. Certainly that first pair of lenses in 1975 gave me better sight than my year old glasses.

Lia

[jayuk]

Lia

Your story and history with KC was good to read! Your whole experience just goes to show that each CL fitter has there own specialist skill.....and the fact that you went from fitter to fitter clearly shows that the moves and changes were well worth it!....

This is another fine example; of how sometimes we do need to step back and re-evaluate ourselves...that what we are being told is true. Can you imagine if you gave up at the first hurdle? and put all your trust and confidence in that optician? as many of us rightly (or wrongly) do.?..What I mean by trust and confidence; it blindly accepting what we are told............and accepting that we can no longer be fitted with lenses...........which in a number of cases is not true

Your story is somewhat similar to mine; where I went out there and found fitters who were experienced with various other lenses and designs.......however sometimes this kind of approach serves a kick to Opticians egos when this approach is tried....albeit from Hospital Eye units to one-man band operations........but on occasions you do get the good ones which understand the situation and refer you to other lens specialists!

J

[brigid downing]

Hi

Just to add my 2penny worth (which is actually worth 3p because I am pre 1975! ) I finally had my hospital appointment last week (hurrah). It went well, i think but took several hours. It sounds as though the problems I am having with contact lens popping out is partly because the "bump" in my cornea is very steep and very near the bottom of my eye.

I am not entirely sure because after 2hrs of trying to find a fit she called in the consultant and they talked amongst themselves. When I tried to ask what they were talking about i was told - politely but firmly not to concern myself, they would sort it - it other words shut up and sit still.

I find the answers offered by group members to be invaluable as they are the only source of real info I have. When I first came to the board some were upsetting, yes, but I think I had been in denial. For a while I felt shocked, then angry, then sad and now more accepting and ready to deal properly with the situation as it really is - not nothing but not disaster either.

I am very grateful for advice and information offered, as well as for the support of knowing i am not alone with this. I am also grown up enough to know that individual experience is just that and that for every story someone tells on this board someone else examples the opposite. - Confusing yes and unsettleing in the first instance, but then strangely comforting

Bea

[Lynn White]

Lia..

I think you could now get a better pair of specs that would be more useful from what you are saying. I know correlation can be a bit erratic but your specs do seem a bit underpowered compared to you CL's.

Yes the joys of getting used to high powered specs! I saw a non KC patient the other day who had worn RGPs for 30 odd years, had no back up glasses and was about -12.00DS. She had dropped her lenses at the swimming pool and they were scratched so much they were damaging her eye. She is a nightmare to sort out because she hasn't worn specs for so long!

The problem with vision you had before being diagnosed was probably KC and what you saw was "ghosting" - a form of shadowing round objects due to aberrations in your cornea.

Lynn

[jayuk]

Brigid

Its really good to see and hear that you have got value from this board!in the way it was intended! First hand experience always beats theory!...thats what I say!

J