A warm welcome to all the new members who've found this site.
For your benefit I thought I might include some links from my home page that you may find of interest. I won't put a link to my homepage as you may think all I was after was a free plug and this is certainly not the case...
Cheaper contact lens solutions.
http://www.postoptics.co.uk.
Other web sites.
http://www.mis.coventry.ac.uk/~lisa/kerato.htm
http://www.eye.ox.ac.uk/main.htm
http://www.moorfields.org.uk
Manufacturers.
http://www.sclerals.com (Scleral Lenses)
http://www.igel.co.uk
http://www.clpl.co.uk
Worldwide - general.
http://www.kcenter.org
http://www.geocities.com/TimesSquare/St ... conus.html
http://www.djo.harvard.edu/meei/PI/Keratoconus.html
Vision Simulator - useful for describing what we see at night.
http://www.surgicaleyes.org
RGPs.
http://www.allaboutvision.com/contacts/rgps.htm
Q&As about contact lenses.
http://www.contactlens.org.nz/qanda.htm
Just a taster of what's out there!
Best regards
Ian
Quicktopic posts: Feb 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Sue B - Hertfordshire
Hi Alice,
I was diagnosed with KC in 1977. It was 9 years and many, many sets of hard or rgp lenses later that I eventually managed to wear lenses all day. I now wear them for 16 hours most days (but do have bad days when I have to leave one or both lenses out). In the early days I often gave up and returned to glasses (which did very little for my vision but were at least comfortable). It was only when I was given an ultimatum - wear lenses or give up driving that I really had to persevere with the lenses. Keep with it. If at first you don't succeed ................
I was interested to read your comment about indoor vision. I find that indoors, I have to pull the blinds on sunny days to keep out the sunlight but that I need to put on all the lights in the house to give me reasonable vision. I work from home and in my office need a halogen desk lamp balanced on a shelf about a foot above my head in addition to having the ceiling light on in order to see reasonably. For some reason artificial light helps my vision but natural light seems to hinder it. Does anyone else find this?
I was diagnosed with KC in 1977. It was 9 years and many, many sets of hard or rgp lenses later that I eventually managed to wear lenses all day. I now wear them for 16 hours most days (but do have bad days when I have to leave one or both lenses out). In the early days I often gave up and returned to glasses (which did very little for my vision but were at least comfortable). It was only when I was given an ultimatum - wear lenses or give up driving that I really had to persevere with the lenses. Keep with it. If at first you don't succeed ................
I was interested to read your comment about indoor vision. I find that indoors, I have to pull the blinds on sunny days to keep out the sunlight but that I need to put on all the lights in the house to give me reasonable vision. I work from home and in my office need a halogen desk lamp balanced on a shelf about a foot above my head in addition to having the ceiling light on in order to see reasonably. For some reason artificial light helps my vision but natural light seems to hinder it. Does anyone else find this?
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Hewitt Catherine
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Andrew G - Leicester
RE : Raising the profile of Keratoconus, may I suggest the following;
A mass e-mail to the health secretary until are demands are met! (I know it sounds like a rooftop protest).
A mass e-mail to watchdog health check.
A national K-Day.
Allowing manufactures / vendors of contact lenses & solutions to advertise on this site, for a price, proceeds going to research etc.
A mass e-mail to the health secretary until are demands are met! (I know it sounds like a rooftop protest).
A mass e-mail to watchdog health check.
A national K-Day.
Allowing manufactures / vendors of contact lenses & solutions to advertise on this site, for a price, proceeds going to research etc.
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Paul C
John. Many thanks for your most interesting reply. It is SO comforting to be able to share ones experiences with others who have the same condition. At the risk of no doubt repeating others, I would just like to thank whoever provides this discussion group - a great application for Internet!
Your description of a misted up windscreen is exactly how I would describe my symptoms too - so this is clearly a common symptom. The 'mist' effect is very slight and is just about unoticeable in normal lighting conditions, but when I am driving (fortunately my other eye is OK!), if I look at (say) a street light at night time, the black background of the sky is instead a sort of dark 'misty grey' which obviously reduces the contrast ratio. Also the street light itself has a slight 'star-burt' effect. Both of these symptoms are, I belive, contributing to the reduced resolution of my vision. Having said that, I can almost see well enough to drive with my grafted eye - especially in daylight when the reduced contrast ratio is not anything like as obvious, so I guess I should be very gratefull. But it would be nice to know if anyone has actually ended up with vision after a graft (with or without glasses)that has resulted in them being able to see well enough to drive and/or read small(ish!) print.
Like Robert, I also feel that I will have a problem with a contact lenses.
The drops that am taking are exactly the same as yours - I didn't realise that one of the side effects is blurred vision - so that is encouraging!
Thanks again for your valuable feedback. Thanks also to Ian for all of those useful web sites - although I don't think you are dong any harm by giving your own URL!
Regards,
Paul
Your description of a misted up windscreen is exactly how I would describe my symptoms too - so this is clearly a common symptom. The 'mist' effect is very slight and is just about unoticeable in normal lighting conditions, but when I am driving (fortunately my other eye is OK!), if I look at (say) a street light at night time, the black background of the sky is instead a sort of dark 'misty grey' which obviously reduces the contrast ratio. Also the street light itself has a slight 'star-burt' effect. Both of these symptoms are, I belive, contributing to the reduced resolution of my vision. Having said that, I can almost see well enough to drive with my grafted eye - especially in daylight when the reduced contrast ratio is not anything like as obvious, so I guess I should be very gratefull. But it would be nice to know if anyone has actually ended up with vision after a graft (with or without glasses)that has resulted in them being able to see well enough to drive and/or read small(ish!) print.
Like Robert, I also feel that I will have a problem with a contact lenses.
The drops that am taking are exactly the same as yours - I didn't realise that one of the side effects is blurred vision - so that is encouraging!
Thanks again for your valuable feedback. Thanks also to Ian for all of those useful web sites - although I don't think you are dong any harm by giving your own URL!
Regards,
Paul
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John Smith
Hi Paul,
Sorry, forgot to mention the important bit - my "misted up" vision had virtually cleared itself within a week after the op.
It's good to hear that you can still drive, my left eye got too bad around August, and I've not driven since. When I look at the eye chart through a pinhole I can read the 5th line, but I think it's the 6th line that is the driving standard (Can anyone confirm that?)
Saw the work doctor yesterday, he's got me going back to work on Monday but only 4 hours a day for three weeks.
John
Sorry, forgot to mention the important bit - my "misted up" vision had virtually cleared itself within a week after the op.
It's good to hear that you can still drive, my left eye got too bad around August, and I've not driven since. When I look at the eye chart through a pinhole I can read the 5th line, but I think it's the 6th line that is the driving standard (Can anyone confirm that?)
Saw the work doctor yesterday, he's got me going back to work on Monday but only 4 hours a day for three weeks.
John
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Shelley
Hello, I've been monitored for KC for 5/6 years now. Today my consultant first mentioned Corneal grafts. I'm a bit green when it comes to this, although I've already had loads of operations and stuff. I also have ME and was worried about the possibility of having to take immunosuppressants. Also, is anyone here younger than me? I'm 20 and my consultant says I'm very severely affected for someone my age. I really don't know what'ss happening! HELP!
Best wishes,
Shelley xxx
Best wishes,
Shelley xxx
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Kate Love
Shelley
Don't panic! There are lots of us out there with KC, you're not on your own. I am no expert, but from what I can gather it is very common to be diagnosed in your teens. I am 39, and have KC in both eyes. I have the added complication of having very little vision in my left eye. I eventually found corneal lenses absolutely useless as they fell out about 4 times an hour! Prof Buckley then recommended that I saw Ken Pullum at Moorfields, he prescribed scleral lenses. Although my vision is far from perfect (I can't drive, but like John I can see far better through a pinhole!)sclerals have meant that I can carry on with work etc, and am avoiding surgery. My worry with surgery is that with really having in one eye only, if it doesn't work, (and even if it does, during recovery) I could end up with practically no vision at all. Have you tried sclerals? Where do you live and see a specialist? It really is worth trying sclerals. If you want to chat about it all, my email adress is kate@frampton21.fsnet.co.uk
keep smiling! I am, it's half term, and I am off to Prague!
Don't panic! There are lots of us out there with KC, you're not on your own. I am no expert, but from what I can gather it is very common to be diagnosed in your teens. I am 39, and have KC in both eyes. I have the added complication of having very little vision in my left eye. I eventually found corneal lenses absolutely useless as they fell out about 4 times an hour! Prof Buckley then recommended that I saw Ken Pullum at Moorfields, he prescribed scleral lenses. Although my vision is far from perfect (I can't drive, but like John I can see far better through a pinhole!)sclerals have meant that I can carry on with work etc, and am avoiding surgery. My worry with surgery is that with really having in one eye only, if it doesn't work, (and even if it does, during recovery) I could end up with practically no vision at all. Have you tried sclerals? Where do you live and see a specialist? It really is worth trying sclerals. If you want to chat about it all, my email adress is kate@frampton21.fsnet.co.uk
keep smiling! I am, it's half term, and I am off to Prague!
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Paul C
John, thanks for the additional information. A couple of other things I forgot to mention:-
* My consultant said that there was no need to EVER remove the stitches unles they caused a problem (eg breaking!). Seemingly as the cornea doesn't have a blood supply, the normal tossue healing process doesn't take place - hence ehte need to keep the stitches in permenently.
* The 'misting' effect is ever so slight, but it's just the reduced contrast ratio (especially with light objects and dark backgrounds) along with the sort of 'starburst' effect that is reducing the resolution of my vision. In all other respects, I seem to have been very lucky in that colour perception seems to be perfect, astigmatism seems non existent and I'm not having any double vision problems. I can read my watch and do things like watching TV at close range, make a cup of tea, read my watch etc - but it's just not quite good enough to do the more demanding visual tasks!
Compared to Kate and Shelly, I feel almost guilty to mention my problems - but when I finally decided to go for this operation, a significant motivation was that if I lost my vision in my other (good) eye, I would be able to use my grafted eye.
If my vision does not improve further in my grafted eye, although it is significantly better than before the op. it is still not good enough to read/drive etc. This is why I wondered whether there was ANYONE out there that has had a corneal graft that has resulted in vision good enough to permit these two activities - even if it takes a year or more!
* My consultant said that there was no need to EVER remove the stitches unles they caused a problem (eg breaking!). Seemingly as the cornea doesn't have a blood supply, the normal tossue healing process doesn't take place - hence ehte need to keep the stitches in permenently.
* The 'misting' effect is ever so slight, but it's just the reduced contrast ratio (especially with light objects and dark backgrounds) along with the sort of 'starburst' effect that is reducing the resolution of my vision. In all other respects, I seem to have been very lucky in that colour perception seems to be perfect, astigmatism seems non existent and I'm not having any double vision problems. I can read my watch and do things like watching TV at close range, make a cup of tea, read my watch etc - but it's just not quite good enough to do the more demanding visual tasks!
Compared to Kate and Shelly, I feel almost guilty to mention my problems - but when I finally decided to go for this operation, a significant motivation was that if I lost my vision in my other (good) eye, I would be able to use my grafted eye.
If my vision does not improve further in my grafted eye, although it is significantly better than before the op. it is still not good enough to read/drive etc. This is why I wondered whether there was ANYONE out there that has had a corneal graft that has resulted in vision good enough to permit these two activities - even if it takes a year or more!
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John Smith
Shelley,
Please don't fret over this. I was really worried when I was first told I'd need grafts (that was about 5 years ago, and I fainted on the spot!) But things really aren't that bad.
My advice would be to consider how bad your eyes are now, and how bad they'd have to get before you'd have to change your life. For me it was driving. I couldn't see my PC screen, so I bought a bigger one. Ditto the TV and my PC at work. I listened to audio books rather than reading. But when I could no longer drive that was it.
Unfortunately, "not driving" jumped out at me a little too fast, and I wish I'd have gone for the graft earlier.
Post graft, the immunosuppressant a couple of us at least have used is a corticosteriod called "Dexamethasone". It's dropped into the eye directly, so it may not have an effect on your ME.
If you want any more details, feel free to drop me a line at john@roundel.net.
Best of luck,
John
Please don't fret over this. I was really worried when I was first told I'd need grafts (that was about 5 years ago, and I fainted on the spot!) But things really aren't that bad.
My advice would be to consider how bad your eyes are now, and how bad they'd have to get before you'd have to change your life. For me it was driving. I couldn't see my PC screen, so I bought a bigger one. Ditto the TV and my PC at work. I listened to audio books rather than reading. But when I could no longer drive that was it.
Unfortunately, "not driving" jumped out at me a little too fast, and I wish I'd have gone for the graft earlier.
Post graft, the immunosuppressant a couple of us at least have used is a corticosteriod called "Dexamethasone". It's dropped into the eye directly, so it may not have an effect on your ME.
If you want any more details, feel free to drop me a line at john@roundel.net.
Best of luck,
John
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