UK Keratoconus Self-Help and Support Association

Hi

After a rather uncomfortable summer of trying to cope with a huge contact lens which has caused severe photophobia I decided to go back to the hospital and ask for help. (A crime which clearly ought be punishable by death in the view of the receptionist! )

I got the head honcho this time who was suitably impressive (and predicatably arrogant). After several minutes of sighing that KC patients are never happy and that some discomfort was inevitable he finally assented ti examine my eyes. Considering I had just explained at length about the photophobia He was rather gruff snapping "I cannot examine your eye if you keep blinking", to which I wanted to reply - well I will stop blinking if you stop shining a bright light in my eye - but I didn't you will be glad to know.

He eventually stated that the lens did not fit well and he said "that could have been painful"

Anyway he then changed demeanor and said that they (the hospital) have just taken delivery of a new machine, a Keratron Topographer, which they have onloan meantime. He thinks I will be a good candidate for it. He explained that it will produce a very accurate map of my cornear (much more accurate that previous attempts).

This map will be sent to a computer in somewhere exotic like Florida, which will determine the exact shape of the lenses I need then tell a LASER (somewhere not exotic, like Denton) to make me a perfect lens.

They have used it on one other patient who was thrilled with the results.

My appointment is Monday morning - but I wondered if anyone else had tried this method of lens fitting else where.

It all sounds abit Dr Who to me. I can well imagine him joining forces with the Keratron to fight the Daleks

Cheers Brigid

Brigid

Its impressive that they are now doing this on NHS!..but yes this technology has been around for at least 2 years in one shape or another.

Whilst it will make an entire bespoke lens based on your cornea; there are a few things to bear in mind

a) when having the mapping performed, ensure that you have had you're lenses out for at LEAST 24 hours

b) bear in mind that KC corneas do change...and the time for the maps to be sent, lenses to be made, you to wear tham could be a while; by which time your KC MAY have progressed?

c) This technique of mapping does not take into account of additional lens movement etc. This has to be manually assumed.....something that does not always happen.........but if you have a well informed optham / optician he will ensure the measurements are correct with the respective +-

HTH

Jay

Jayuk,

Optoms need to know what the topography is like too straight after a lens is removed too.

I have only had one done where lenses were not afactor because that was when I was dignosed as KC returning.

All the rest that have been done evry time I visit have been done with the lens removed just before looking into the machine.

On all there has been slight differneces, but if you average out all the readings there is no difference between never had a lens and imediatly after lens removal. I checked this my self with basic statistical analysis on the readings as the hospital let me have a copy of the topographies.

I know this contradicts what Jay says, but in this instance it is probably best to run the gauntlet of the receptionist and get from the hospital weather you need to have lenses out for 24 hours or go with lenses in.

As this is important to you, the hospital advice will should over rule what is said here.

Try and iget it in writting too, the hospiatl I go to always confirm if I need toa rrive with lenses in or out. It does depend on what aspect of my vision is being examined.

Hi
thanks for replying.

My only previous topography was also at diagnosis - before I had any lenses to worry about.

This time I have been told to come without lenses in and not to wear them Sunday either.

As I am currently without glasses (following an unfortunate stairs and cocktails inccident) this is going to be interesting, not to say dangerous!!

Cheers
Brigid

Brigid,

Jays comments stand then

It is always helpful if you can take a frien dwith you. They can help ensure you stay safe while you are without lenses and can also make notes of any conversations during the consultation.

Then when you get home you have a point of reference to make sense of the whole proceedings.