Quicktopic posts: Jul 2002

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

GailMJ

Postby GailMJ » Mon 01 Jul 2002 10:09 am

I previously posted a message about my keratoconus and the possibility of going for a DLK operation instead of a PK. Anyway just wanted to let everybody know that last monday evening I had the DLK to my left eye and so far so good. Whereas previously I couldn't see the board with the big E on it I can now not only see the board I can also see the first two lines. Through a pinhole I have legal driving vision.

Janet Manning

Postby Janet Manning » Mon 01 Jul 2002 5:21 pm

Hi Vera,
You don't say what type of lens your brother is using, but I assume sclerals if he is using amidose and having trouble with air bubbles. The lens should be brim full of amidose to avoid any air being in the lens. With your face downwards, you can then slip the lens under the top lid, without the amidose falling out. That's the theory anyway!! Mostly it works, but if I try to hurry, I usually end up with an air bubble.

To anyone else using Amidose saline,
The hospital prescribes this, but I am having trouble with prescriptions from the GP. I get the prescription, and the chemist can get the Amidose from the manufacturer, but they cannot get paid for it, as it is not on the NHS list! I have always paid for my solutions before, but Amidose triples the cost. A month's supply is about £30. My GP was quite prepared to prescribe it, because she felt I was a special case, using sclerals. Anyone got any ideas how we might go about getting it officially on the NHS
list?

Best wishes, Janet

Elisabeth Walker

Postby Elisabeth Walker » Tue 02 Jul 2002 3:22 pm

This is a sonderful website and I have lesrnt so much from you all.I've had KC for about 15 years and am fortunate enough to see fairly well through glasses though the vision is perfect with the (soft) lenses but due to clouding up I only wear these 4 hours a day.I have just had to go to Moorfields A&E with Blepharitis(inflammation of the eyelid) which was unbelievably painful and am on antibiotic drops.Does anyone know what causes this?Is it more likely to occur in lens wearers?I am not wearing my lenses at present and they said I could wear them in a week but I feel very nervous if it increases the risk of another bout of Blepharitis.

Jillian Wolfenden

Postby Jillian Wolfenden » Tue 02 Jul 2002 4:51 pm

Thanks to everybody who contacted me, it's been wonderful to talk to other people in the same boat, so to speak, thanks again it's much appreciated.

Jan Fisher

Postby Jan Fisher » Thu 04 Jul 2002 4:53 am

I was diagnosed with KC back in 79. I had no real problems until after my daughter was born in 98 but since then everything seems to have gone downhill. At the moment I am wearing RGP lenses piggyback, which when I am having a good period seem fine. My main problem, apart from dry eye syndrome and a recent case of hydrops seems to be an excessive build up of protein. Every night I soak my lenses in protein remover and I have bought an ultrasonic cleaner to try and stop the build up. I have to have the lenses polished on a regular (and it seems to be getting more regular) basis. Can anyone out there suggest something that I can use to either slow this build up down or a more efficient way of removing it from the lenses, as I am sick to death of looking at the world through thick fog and very sore eyes

tactical@umbilical.demon.

Postby tactical@umbilical.demon. » Thu 04 Jul 2002 1:38 pm

Jan wrote:

At the moment I am wearing RGP
lenses piggyback, which when I am having a good period seem
fine. My main problem, apart from dry eye syndrome and a recent case of hydrops seems to be an excessive build up of protein.


Hallo Jan,

Sorry to hear you're having problems.

Please excuse me if I'm getting confused here - but do you mean two pairs of lenses made of RGP piggybacked over each over, or do you mean an RGP lens piggybacked over something else (a soft lens, maybe)?
ANd what is the protein building up on? - if it is an RGP lens, then you shouldn't need any fancy (and no doubt expensive) solutions at all! - try Fairy Liquid. Seriously - or another type of washing up liquid, maybe, so long as it isn't too aggressive. Just squeeze a few drops of neat F.L. out of the bottle onto the lenses. rub it around between thumb and forefingers for a few moments, then rinse the FL off under the tap, and dry with a tissue/hanky.

I've heard baby shampoo suggested too, though not tried it. I often (particularly when I'm away from home and packing light) used Body Shop shower gel, which works OK for me, though you have to be careful to rinse all the perfume away.

Good luck.

Rosemary

--
Rosemary F. Johnson

Cone Eyes

Postby Cone Eyes » Fri 05 Jul 2002 4:09 am

Jan, dry eyes and contact lenses, an unpleasent combination.
Try the following;

Rewetting drops, Bausch and lomb are good.

Natural tears, you may know of already.

Simple eye ointment last thing at night. (from boots)

Try another protien remover.

And finally give your eyes a rest from lenses for as long as pos. Limmit the wear time, Alternate wearing between eyes. Get the eye stable again and this will give you a good foundation for the lens to sit on.

Look at your environment, do you have a fan or air con blowing air around the room or car. Wind drys clothes, and it does the same to your eyes!

Also you may need new lenses.

Rae

Postby Rae » Fri 05 Jul 2002 5:35 am

I have KC in both eyes and due to childhood squint they also do not work together at all. I have already had a graft in my right eye (in 87); following that they tried to improve the sight in that eye with lenses etc but there were two problems: firstly I can't tolerate contact lenses at all anyway (because the astigmatism is too severe)and secondly when they tried to improve the sight in my right eye with glasses my eyes kept fighting eah other so I had double vision and lots of headaches. This wasn't a problem at the time cos my left eye was good. However my left eye is now changing quite quickly (changing my glasses every 2/3 months) although apparently 'not bad enough' for a transplant yet. This means that, because I guess the vision in both eyes is now equally poor (my right eye has a plain glass 'balance' lens) my eyes are fighting again and I can't see that well anyway. This is causing me massive headaches, especially when I have to spend a long time looking at people a relatively short distance away (like at a meeting or on training) or if I read too much (even large print) etc. Does anyone have any suggestions about how to cope with this - in particular the headaches? Anyone with KC who can't tolerate contacts - how do you cope? I have tried several times now - after 10 minutes my eyes are like ballons, but now I get my new glases and within weeks I am 'turning' them (which my kids find very funny) to compensate for the changes in my vision. Sorry for rambling and maybe my questions are stupid but I'm really starting to struggle here. Thanks.

Jan Fisher

Postby Jan Fisher » Fri 05 Jul 2002 5:57 am

Hi Rosemary

Thanks for your suggestions. Yes I wear a soft daily disposable lenses and RGP's . I used to wear a monthly disposable but they got too clogged up with protein. I used to use Fairy liquid on my old contacts (before RGP) and found that it worked a treat but was told not to use it on the gas permeables as it could cause problems. I guess they were wrong, how long have you been using it?

Thanks again Jan

Jan Fisher

Postby Jan Fisher » Fri 05 Jul 2002 6:04 am

Cone Eyes,

Ta for the suggestions. I use HypoTear during the day and Celluvisc at night, thank god for pre-paid prescriptions and 4 sight one 4 all to spruse up the soft lenses as and when needed. I also use lc65 during the day to clean the RGP's. As you are probably aware yourself its not cheap! I havn't tried the Simple eye ointment so its off to Boots this weekend.

Jan


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