Quicktopic posts: Nov 2002

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

Mikekeratoconus@aol.com

Postby Mikekeratoconus@aol.com » Fri 01 Nov 2002 9:18 am

The life of a scleral lens must vary enormously. However, I have had My right lens is about 15 years old and my left about 8 years.Everyone is different but I would be surprised if lens only lasted one yea Mike Oliver

gemstone@umbilical.demon.

Postby gemstone@umbilical.demon. » Fri 01 Nov 2002 1:09 pm

Steve wants to know how long scleral lenses last:

Well, put it like this.....

The one I've got at the moment in my left eye - an RGP scleral
supplied by Moorfields - was my first RGP lens, and I got it
about ..... oh, I forget..... eight years ago? ten years
ago?? something like that.

The one I have in my case for my right eye ...

...... I should explain at this point that I tend to wear only
one at a time; at the moment I have the left one in and not the
right .......

.... is a PMMA scleral lens fitted by Keith Nelson on Merseyside when I was still living there. And I moved down to London just
over 20 years ago, so it must be well over 20 years old.

Now, I admit here that I must be somewhat unusual in still
wearing one that fitted well over twenty years ago.... and it is neither as comfy, nor as good in vision terms, as it once was.
And this is a source of amusement - or something like that - to
the folks at Moorfields. But in the umpteen years I've been
going to Moorfields, they haven't yet managed to find anything
better. (I'm thinking of moving back to Liverpool.....!)

If yours are only lasting a few months, I'd be rather concerned, not to mention very annoyed!! - suggest you complain to whoever
you got them from.

One thought: what do you keep them in? No, not your eye; I
mean, what sort of case do you put them in when you take them
out? I remember when I got the first RGP one, I was advised by
Ken at Moorfields not to keep it in one of the nice spring-lid
cases that look as if they've got wedding rings in, because
something in the metal of the springs (or something) could make
an RGP lens discolour. So I have the RGPs in little plastic pot things - much less nice but apparently better for the lenses.

Hope this helps.

Rosemary
--
Rosemary F. Johnson

Louise Pembroke

Postby Louise Pembroke » Mon 04 Nov 2002 12:37 pm

Hi folks, calling all corneal lens wearers, the cheapest squeezy bottle saline I've seen is in Superdrug at £1.49 [compared to Ciba at £2.77, exactly the same ingredients and amount].
I have fond memories of my optitian who I first saw when I was 14. I only saw him because all the girls in my class were seeing him as he was drop dead gorgeous. So I dutifully go along to check him out, and sure enough, he that months pin up, but most of friends didn't even need glasses. I felt a bit cheated having a diagnosis of KC and a hospital appt, I was thinking, 'but I only came here to look at you...I wonder if he ever knew he was hearthrob of my school.

cory

Postby cory » Mon 04 Nov 2002 1:22 pm

is anyone aware of any studies done where people affected with the disease tried to correct their vision by doing eye exercises or any type of psychological or physiological studies? whether they were successful or not

sarah marsh

Postby sarah marsh » Tue 05 Nov 2002 5:48 am

hi
its has been a while since i wrote a message .
to all who have had the transplant i have a question this may not have anything to do with KC but last thursday night my legs and feet swelled up so much so that i could hardly walk. i went to casualty and doctor on duty( not my own doc) thought that maybe it was an after effect of the transplant and the eye drops. has anyone else suffered this?
i know this sounds strange but he seem to think that was where the problem came from.
i am seing my surgeon on the 22nd for another check up but just wondered if anyone else suffered .
thank you
sarah x

Louise Pembroke

Postby Louise Pembroke » Tue 05 Nov 2002 9:28 am

Sarah poor you! I've not heard of that happening before, but I do remember from my Operating Department Assistant days, that swelling of the feet and legs after surgery can be due to circulatory problems as a result of surgery/anaesthesia.
Cory, I'm not aware of any such studies and would be sceptical anyhow, eye exercises would only affect the eye muscles, not the cornea. I cannot see how even the strongest of eye muscles would change a cornical cornea. The only thing even close to this I found was when my KC was at it's worst before grafting and I couldn't wear lens - I found that by pressing under my lower eyelid with a finger against the eyelid I could very crudely & slightly change the shape of my cornea so that I see a bit more of the tv, must have looked strange though!!

Bob Hillcock

Postby Bob Hillcock » Tue 05 Nov 2002 9:54 am

Louise DO YOU FANCY HAVING A CHAT ABOUT KC IN THE CHAT ROOM?

rosemary@umbilical.demon.

Postby rosemary@umbilical.demon. » Tue 05 Nov 2002 1:04 pm

Hi.

Thanks to those responsible for the newsletter - arrived this
morning, complete with pictures of the intrepid walkers and the
(non?) source of the Thames.

About the Dialogue with Moorfields meeting :

Can these possibly take up, and better still, do something to
sort out the appointments system? I can't be the only one who
has regularly had to wait for hours! It's beyond a joke and
badly needs sorting out - other European countries have
hospitals that can manage to have appointments systems where
patients actually get seen when they are due to see someone, and if they have to see two or more people this is organised is a
sensible back-to-back fashion, without having to wait ages in
between each.

Now, I know sometimes one has to see someone first, then "try
this lens for an hour/half an hour/whatever and we'll see how it gets on" - but not all of us, not every time, and even when we
do, the first see-someone should be when it says.

This is not just a matter of inconvenience - how many of us
work, or used to work, for a boss/personnel department who can't understand why it takes so many hours to have a simple
check-up? How many of us are there who work in jobs where there is no "paid time off" for routine appointments, and we have to
make the time up, either on this month's Flexitime, or by
working late the other days that week? - hmmm, working late all
week when we've just been to Moorfields, been peered at, fitting with new lenses, had drops put in, and are feeling all sore
anyway! Yeah, this appointments system is a health hazard in
itself.

But apart from the logistics, an "appointments" system that
could result in a wait of three hours or more does not result in good quality care. I mean, if one has, say, a four-hour
tolerance level, puts one's lenses in to go for an appointment,
takes an hour and a half travelling to Moorfields, then two and
a half hours sitting in the waiting room, then by the time one
is finally seen, one's eyes/lenses are at the end of their
tether anyway, and don't give the medic/ophthalmologist/whoever
a good idea of how the lenses fit, settle, are tolerated, nor
what sort of vision one can get with them in "normal" conditions.
The alternative isn't much better - you leave the lenses out,
grope your way up to City Road without them, sit in a gloomy
waiting room trying to read with the tip of your nose, then when you finally get seen, you have to put the lenses in then, and
the person-in-question only sees a newly-put-in lens, not one
that has had any time to settle; and nor do the see the problems that only start to build up after the lens has been in for a
while.

Come on, Moorfields; this needs sorting!


Another thing that has occurred to me is: once they know we have KC, we seem to be put onto a "KC Conveyor Belt" - and no-one
seems to do anything about checking us in case there is anything *else* wrong. is this my imagination, or should something not
be done about this?

Rosemary

--
Rosemary F. Johnson

Robert Smith

Postby Robert Smith » Tue 05 Nov 2002 3:24 pm

Sarah
As someone else who had a transplant this year I just wanted to say that I have not had any problems like those you describe - they sound awful and rather worrying - and I hope you get it sorted out.

My only problem is getting back to see the specialist - each of my appointments keeps getting put back 4-6 weeks. I have not been seen since May - appointments in August and October were both postponed and I have one now for December. Admittedly I don't seem to have any problems but I would rather like a check up - they made such a fuss about how much after care would be needed and then don't do it. I find now that my support of the NHS system is being seriously undermined!

Robert

Laura

Postby Laura » Tue 05 Nov 2002 3:54 pm

Why are the NHS useless! I have been on a waiting list (or so I thought) for the past 5 months for my first appointment to see the specialist. However we rang the hospital and they say they have no recoerd that I was transferred there by my doctor but, my doctor says she has sent the referal twice now!! Whats going on, does anyone else have this problem?


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