What usually happens at your routine appointments?

[BusyLizzy]

Hi there,

I'm wondering how the follow-up and care of KC patients at contact lens clinics/KC clinics varies from one place to another.

I'm seen at the RAH, Paisley by an optician every 3 to 4 months. At each appointment I am asked to cover one eye then the other and read the chart, wearing my lenses. They then put fluorescein dye in the eyes and darken the room, and look at the lens through a lighted hand-held device to see how the lens is sitting.
Then the lenses are removed and the eyes looked at through the slit lamp.
Usually I have to have the inside of my eyelids examined because of allergies.

That's it.

How do your experiences compare?

[rosemary johnson]

This all sounds pretty familiar, actually!
You missed the bit about sitting in a waiting room for Far Too Long. Normally a hot, dry stuffy waiting room that is too dimly lit to be able to read the book/magazine you brought to read.
You missed the bit about the receptionists who always want a certain piece of cardboard with their precious reference number on, and get shirty if you don't have it, or have the piece of card of which one of their colleagues wrote down the number wrong. And who, when you learn the ropes and go up to the reception desk and say, for example "Hallo! Two-four-six-three-six-seven" can't cope with it.
I don't have the inside of my eyelid examined - but then I don't get allergies. At least, not in my eyes (I have plenty, but they set off my asthma, not skin conditions).
These days I ten d to get my eyes looked at down slit lamps with the lenses in, not just without.
And when I get the fluorescin dye put in, the eyes get looked at down a slit lamp with a blue light filter, not one of those hand-held purple light boxes (but I remember those things well).
SOmetimes, when you're being asked how much you can read, they put a black sheet with a few pinholes in it in front of your eyes and see if you can read any more through a pinhole.
I normally get asked how long I can wear each lens, and how many days a week I wear each (because I alternate; well I did before the graft which is another story).
And sometimes, it is time to try a new lens, or combination of lenses, in the case of piggy-backing.
Your appointments sound fairly par for the course, I'd say.
Rosemary

[Andrew MacLean]

Pretty much all of the above, plus (pre graft) a routine measurement of my cones (I cannot remember what that machine was called) and (now) a routine topography. I have the topography on most visits, but not all.

Actually, it does occur to me that the laser topography may have replaced the old machine for measuring the cornea.

Then there is the routine 'refraction' to see what sort of correction I need and what sort of adjustment needs to be made for my astigmatism. I then see the ophthalmologist who closely examines my new cornea, my retina and macula.

Andrew

[BusyLizzy]

Thanks for your feedback.

Andrew, it's interesting to hear that where you are/were being seen they do a topography and measurement of cones, as they don't have such equipment available at the RAH. Does the outcome of this change the management of KC and lens fitting much in comparison to only having the other tests done?
Do you mind me asking which clinic this was?

[Andrew MacLean]

I could not answer that question; but it did enable them to know for sure when the astigmatism on my post graft cornea had settled down to the point where it was possible to prescribe glasses in the reasonable certainty that my astigmatism would not change so that it would be a realistic proposal to prescribe glasses.

I have never understood why you had to pass Gartnavel on the train, change trains and stations, take a train to Gilmour Street and then a bus to RAH when you could have got off the train at Hyndland and attended the Scottish centre of excellence for ophthalmology. Why not ask for a referral?

Andrew

[melissa]

In SA my optometrist and opthamologist visits seem to be the same as your experiences. They don't really follow a set pattern- since I am mostly harping on about my problems and they both seem happy to discuss these things with me at length.
Because my care is private (with medical insurance) I hardly ever wait at all, and am generally well treated.
Topography- my inital tests in 1999 were done on a machine which shone concentric red circles in my eyes, but the new one is a set of spinning blue lights i think. - called a Pentacam scan.
Interestingly I have never had the pinhole thing done- but have an appointment with my Optometrist on Thursday so i will ask him to try this out of interest,

[BusyLizzy]

Thank you all for your time and thought in responding.

It has been an eye-opener (no pun intended).

Andrew: I feel you are right about the Gartnavel referral. I've been treated in Paisley for 7+ years and perhaps I am a little afraid of change and this is what's holding me back. However, the fact that you receive better overall care at GN and also that last week I had a pretty much wasted long journey to Paisley for a less than thorough appointment with virtually no input from the specialist, suggests that I may be better off moving.

[Andrew MacLean]

Lizzy

Now that they have redrawn the boundaries between health areas in Scotland, and Argyll is part of Glasgow, the change should be easy.

Andrew

[dweezil1968]

you all forgot the bit where the nurse comes in the waiting room and SHOUTS you name as presumably you are old and deaf as well as blind. this always really annoys me as I am under 40 and always surrounded by people at least 25 years older than me!!!

[rosemary johnson]

Ah, dweezil, you clearly have a nicer waiting room that the one I'm used to.
Which is large, open-plan and tends to be noisy, and most of the staff don't shout loud enough, so it is hard to hear who they are actually calling over the background hubbub.
Rosemary