Quicktopic posts: Mar 2003

[umbilica@umbilical.demon.]

Rob asked if the sunglasses had to be polarising:

I find polarising ones a great help, and better than ordinary
ones, because they reduce the amount of light reflected off
shiny surfaces - including water, or wet roads. Reflected
light waves, off a shiny or wet surface, tend to be all polarised into a particular plane, so are cut out by the polarising glasses, to a greater extent than simply the reduction of passing through
coloured plastic.

Rosemary
--
Rosemary F. Johnson

[umbilica@umbilical.demon.]

Ash was asking about hydropses:

We've had lots of questions about people's experience of a
hydrops recently - pity there isn't some form of archive where
the replies could be readily available. Or even the ability to
put titles onthe emails to determine subject (every single one I get has the title "Keratoconus").

Also, can someone in the know pleaes confirm what is the
plural? One is a hydrops, so what is more than one?

Anyway, to answer Ash's question:

I've had four: one in the Christmas vacation of my first year at university (aged 18 and a half) in the right eye; the second at
the start of my Finals term in my third year (age almost 21),
then again, small ones, at age 37 and 38, all these in my left
eye. The first two were a complete vision "white-out" in the
affected eye, and took 4-6 weeks to clear. The first cleared
almost completely, the left now has some white marks of
scarring, but I still use lenses (sclerals; I've always had
sclerals) and see out of it, though not so well as I used to
once upon a time, and the light sensitivity is ever worse -
whether either of these has anything to do with the hydropses I
don't know. The third and fourth left the vision cloudy but I
could still see something past the cloud. they took - oh, about a month to settle and heal, and about another 6 months gradually returning to "normal" while they tended to get sore more easily
than usual. I put the lens back in as soon as possible in each
case, so I could use the eye - in the case of the first two, I
guess that would be 6-8 weeks, or thereabouts. After the second - the first in my left eye - it took me quite a while to
readjust to the level of vision in that eye - it seemed more
blurry somehow - and trust it to go out with just that lens in
(I've tended to wear the lenses one at a time since... well, I
can't quite remember when! but before then I think). After the
fourth I had the lens back in a week later - not ideal and it
was still very, very tender, but the right eye was simply not
coping with the extra work and I had an important meeting to go
to and wanted to be able to see the important people I hoped to
meet there. The lenses I referred to meant sclerals.

But people do vary a lot - Harpo's recent hydrops took 13 weeks
to heal and still left a white cloud, so I guess I was lucky.

Rosemary

--
Rosemary F. Johnson

[Naz]

i just found out i have keratoconus. can anyone please tell me how does this effect life???

Also I would need to wear rigid contact lens, would i be able to wear them overnight???

How much care would i need???

please email mohd_naz@hotmail.com

Thanks

[Janet Manning]

Hi Naz,
Welcome to the discussion page! I'm afraid I cannot give you specific answers, as we are all affected in different ways, depending how severe the KC is. I can tell you that many of us get good correction with rigid gas permeable contact lenses and cope well. It is not advisable to sleep in lenses. If you are going to be out all night, I suggest you give your eyes a rest from the lenses for a couple of hours before you go out. You will soon learn coping strategies that match your lifestyle and enable you to lead a normal life.

You may already have been referred to a hospital eye department. If not try and do this, as you will then be able to get your lenses on the NHS for £44 each, rather than paying the much higher prices from a High Street optician.

Do keep in touch and let us know how you get on and feel free to ask lots more questions!
Best wishes, Janet

[Sue Ingram]

Dear Naz, Welcome to the club! You should find that once you have got used to your contact lenses life pretty much carries on as normal and you should not need too much 'care' as you put it. Its only really if KC develops into the later stages that you might find you need to look at different lenses, or even the possibility of a corneal transplant. Some people's KC develops, some people's doesn't, but unfortunately this is something that noone can predict so best just to deal with your situation at the present time.

However, you do not go blind with KC; it is a matter of managing the condition and everyone finds their own way of dealing with it - you find yourself using different strategies for different occasions. You will find that KC seems to be different for each individual so make sure you arm yourself with all the options and find the solution which is right for you.

Contact lenses are not normally worn at night due to the lack of oxygen to your eye. In fact, after a while of wearing them every day, you will be pleased to take them out when you go to bed in order to give your eyes a rest!

Good luck and keep us informed of your progress. Take care. SUE

[Ash]

Hi there!! just another question about hydrops!! from reading about hydrops on the KC links, has anyone encountered improvement in your vision after a hydrop??
and is it advisable not to get water near or inside the affected eye??

Thanx Ash

[Paul Bines]

Unfortunately, my operation (which should have been yesterday afternoon) was cancelled due to the donor cornea not being suitable for grafting. I'm (jokingly!!!) assuming they dropped the eye!

Hopefully, a more suitable donor will be found, and my op will be rescheduled.
Au Res.,
Paul

[Andrew MacLean]

After over 20 years of wearing RGP lenses, I have recently found it increasingly difficult to get them to go in; my eyes are sorer when I wear them, remain sore when I take them out and are still sore even after a whole night without them.
Does anyone have any idea of why this should be happening now? I have never found RGP lenses exactly comfortable to wear, but the pain I experience is very much worse now than at any time in the past (except when I think I had hydrops (although this is a self-diagnosis on the basis of your excellent article).

[Helen Royston]

To Janet Manning,
In your message (1545 to Naz) you said that if you get referred to a hospital eye department that you could get your lenses at a reduced price, does that go for every-one, I have had KC for six and a half years now and have paid full price for my lenses everytime, increasing from £75.00 which is what I paid for the first ones, to £105.00, which is what I paid for them a week ago. Even when one got broken I had to pay for a replacment, which was really frustrating as I'd only had those particular lenses just over a week at the time. Any info. on getting lenses 'cheaper' would be greatly appreciated.

[Sue Ingram]

Dear Andrew (1549), Sounds like you are having exactly the same problems that I had with rgp corneals after having worn them for over 20 years. I think what happens is that because we tend to overwear the lenses and HAVE to wear them day in, day out, without giving our eyes a rest, one day our eyes just decide they have had enough, don't want to do it anymore and become intolerant of the corneals - which is just great when you rely on them in order to run your whole life, isn't it?.

I struggled for over a year with the corneals, experiencing the same pain as yourself - especially the fact that the pain does not seem to decrease even after having not worn the lenses all night (as always used to happen in the past!). Trying to put my lenses in each morning was pure Hell. Moorfields were very helpful in trying to find a corneal lens that would fit my left eye - my good eye, the one that was experiencing the most pain and the one I could not carry on without. They tried all sorts, but to no avail.

In the end, it was suggested that I try scleral lenses - these are large and fit over your whole eye, sitting on the white (sclera) of your eye. They are made of gas permeable material these days. I had dreaded this day as I had seen scleral lenses and really did not want to have to put them in my eye, thank you very much! However, I have now worn them for over 3 years and I think they are the best thing since sliced bread - why didn't someone suggest them earlier? They are 100% more comfortable than corneal lenses, no dust or grit can get behind them, there is no way that they can fall out, you can swim with them in, the edges of the lenses do not rub on your eyelids and make them sore and itchy, and they do not hurt the cornea as there is no contact. What more can I say?

However, I found one disadvantage - they do not correct my vision as well as the corneals - I believe this is because of the fact there is no contact on the cornea. But, I now have a pair of glasses that I wear with the sclerals just for close work and also for reading road signs which is very useful! This is not always the case with everyone, though - some people find the vision with slcerals is fine.

So, it might be worth you looking into sclerals. I also found that after I had worn the sclerals for a while, I could then go back to wearing the corneals and used to swap half way through the day. It seems like the sclerals gave my eyes the well-earned rest they needed after 20 years of abuse!

If you have any questions regarding sclerals, then don't hesitate to post them. They can seem scary to start with but you soon get used to them. Good luck and let us know how you get on. Take care. SUE