Quicktopic posts: Oct 2001

[Sue Ingram]

Hi Kim, I understand your problems totally; I had been wearing rgp (hard) corneal lenses for 25 years when my eyes decided they did not want to wear them anymore. I thought that was it, time for the graft, however, scleral lenses were suggested - have you heard of these? They look pretty horrendous as they cover your whole eye but as they filled with saline they do not touch the cornea. Once they are in the eye, noone would know you had them in. I am now able to juggle around with my lenses. I wear the sclerals for half the day and the rgp corneals for the other half - it seems that because I don't wear the rgps all day now, my eyes can tolerate them again - I do get better vision when wearing them. Hopefully, this has put a greater distance between me and a graft for a while. I attend Moorfields Eye Hospital - how about you? They have alot of expertise there in scleral lenses. I would definitely ask your practioner about them - it is worth going down all routes before making the decision to go for a graft. I also piggy-back some different scleral lenses with soft disposable lenses - the only reason for this is the comfort factor. These sclerals are closer to the eye and I cannot tolerate them for too long unless I wear the soft lenses underneath -I get better vision with these sclerals than my ordinary ones However, I can usually only do the piggy-backing for a couple of days at a time (also I am not sure how good it is for your eyes to be wearing two pairs of lenses!). So, it is a real juggling act but you get used to it and the longer I can keep away from the surgeon's knife, the better. Good luck with your investigations. Take care and if you want to have a chat, please email me on sue.ingram@virgin.net and I will let you have my telephone number. Keep smiling! SUE

[Tony Stigle Webperson]

Birmingham
A meeting of the Birmingham Group will take place.

Details 11.00am to 1pm Saturday 20 October Outpatients department Birmingham City Hospital (Dudley Road) Speaker:
Tony Sabel "Scleral Lenses are not Jurassic"
See the News Pages

[Tony Stigle Webperson]

GENERAL MEETING 20th October at 11.00am
THE BOARDROOM MOORFIELDS EYE HOSPITAL LONDON

REFRESHMENTS PROVIDED

COME ALONG TO DISCUSS HOW TO IMPROVE THE SERVICE AT THE
MOORFIELDS CLINIC


Making a difference
Chair Mike Oliver writesÂ… The Group has been asked by Moorfields to comment on how the hospital eye service is perceived by KC patients and how the service can be improved.This is a real opportunity to contribute to the debate on change and modernisation within the NHS. So come along to the next members meeting on Saturday 20th October at 11.00am in the Moorfields boardroom and have your say.The comments made will be fed into the Group's response and will hopefully be used to improve care at other eye clinic around the country

[Carl Raven]

Hi Kim, Sorry to hear of your problems, hope Sues comments are a help. I can tell you that she is an inspiration to anybody who thinks they have problems wearing lens. I can relate to your difficulties having coped with keratoconus for 24 years. Currently I am wearing a rgp in one eye and a scleral in the other and this is after two ops in one eye. My comment to you and I hope help is to recommend you push to try as many different types of lens as possible before considering surgery, sclerals are still quite a new thing for me but they are worth a try. Good luck Carl

[Kim Remmington]

Hello Sue, Carl & everyone else who is helping me. Thank you all for your help. I really do appreciate it. After going back to hospital yesterday, my optician has agreed that Kerasoft are not the answer for me! I've got to give RGP another go, for the 3rd time,(I think he thinks I'm being a wimp about the comfort aspect of it). I don't hold out much hope but I'm going to try. I shall try and persuade him to try piggy-back or sclerals as the next step. I do want to make sure I've tried all options before surgery. I have got another 5 weeks grace with my wonderful Softperm lenses, while I wait for the RGP so as you can imagine my mood has lightened considerably. I can now see my childrens faces as I try to stop them killing each other!!!
Thanks again.

[Mark Bennister]

Kim
I had a corneal graft in my left eye 13 years ago and wear RGPs in both eyes. I have just been fitted with scleral at Moorfields for my right, after wearing RGPs for 20 years. My tolerance dropped after bouts of illness and eyelid infections. The graft causes some desensitisation in the left which can lead to some post op difficulties, although sensation does return to some extent over a few years. I have not heard of corneas been voluntarily desensitised and am surprised at this course of action. You need feeling in your eyes to know when to take the bloody things out!! I recommend - as many others do - trying as many lens options as possible, including sclerals. If you can find some way to continue wearing your softperms that must be the way forward. Good luck
bennister@lineone.net

[Kim Remmington]

Dear Mark,
I think I should have explained a bit more about the desensitisation course I am on. It is not to actually desensitise your eyes, but I'm extremely allergic to house dust mites, which causes my corneas and eylids to swell, itching etc. Because my allergic reactions are so severe it has been very difficult to wear lenses, especially RGP. I'm hoping that after the course my eyes will not have these reactions to dust and I should be able to tolerate lenses better. My eyes will still have complete feeling in them, they hopfully will not react to the dust in the air. Mind you, after just three injections (the course lasts for 3 years), I have had really bad reactions to them, and these first injections are basically just water. So it looks like I might be too sensitive to be desensitised. Work that one out!!!
You all seem to do well on sclerals, when RGP aren't an option any more. My optician is just not willing to try them out on me, he says they are really uncomfortable and I couldn't tolerate them! Seems to me that everyone who does actually wear them has a very different view.Do you find them comfortable?
I usually go to the hospital in Durham but I'm going to Sunderland Eye Hospital on 7th Nov. to see the consultant and hopfully I shall try and get my contact lens fitting done there. I cannot carry on with my Softperm though as they stick to my eyes and are causing blood vessels to grow.
Hope I have cleared up any misunderstanding.
Thanks
Kim

[Emma]

Hi

I left a messgae about 2 months ago now, wehn I had just been told that I have KC. Anyway I have now been fitted with RGP lenses (about 2 weeks ago). They tried soft first but they didnt help at all. The RGP are not too bad at all actually, I was so worried about them being really uncomfortable but I seem to have taken to them quite well. The only problem that I am having that I thought i'd mention to see if it happens to evryone else, is that I find it really hard to take out the lens in my left eye. Twice now it has got 'stuck' on the white of my eye and sort of dries out. I have a little sucker thing to get it out (which i keep losing). Anyway I just wondered what I am doing wrong for this to keep happening, and how you can get the lens out if it has stuck to your eye (and have lost your stucker). It seems like a really trivial, minor thing but it is making me nervous to put my lenses in!

Thanks

Emma

emmafletch@yahoo.co.uk

[Kim Remmington]

Hi Emma,
When I wore RGP lenses the same thing used to happen to me. I would end up sweating like mad, desperately trying to get the 'thing' out. I ended up using drops of saline from a vial (I'm allergic to preservatives, but if you're not then I think something like re-wetting drops would do). Put a few drops in your eye, then close your eye and massage the eye lid gently, getting the lenses centred back on your eye and you can feel the lens has released it's suction. Then try and get it out! During the day keep blinking like mad to keep your eye lubricated and add any drops you have. I don't know if there are any better suggestions but this is how I used to deal with it.
By the way I've never heard of this 'sucker' thing, where did you get it from?
Hope you have some success. Good luck
Kim

[=?iso-8859-1?q?Emma=20Fle]

Hi Kim

Thanks for the advice! I got the sucker thing when I
got the contact kenses from the opticians.

Thanks
Emma


____________________________________________________________
Do You Yahoo!?
Get your free @yahoo.co.uk address at http://mail.yahoo.co.uk
or your free @yahoo.ie address at http://mail.yahoo.ie