Thanks a bunch for responding..... I too am glad that i've found this site. I have many questions as well and hope they can be answered. I do have one more though. I love to excersize and always go to the gym, Do you know how long I would have to refrain from excersizing?
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Quicktopic posts: Oct 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Sue Ingram
Dear Chris (1053) and Patricia (1054), As Sarah says, welcome to the KC Discussion Page. Please investigate the situation with regard to corneal transplants, however, please, please also investigate scleral lenses and at least have a trial of them to see if they work for you.
Like both of you, my eyes stopped being tolerant to rgp corneal lenses (after more than 20 years' wear). For over a year Moorfields did their best to come up with all sorts of rgp corneal lenses to see if they would fit properly but no luck. I was at the point where I thought that I would have to have a corneal transplant (as yourselves), when I was then offered scleral lenses; these cover your whole eye and are so infinitely more comfortable than corneal lenses. They have also enabled me to be able to wear my corneal lenses again due to the fact that I am able to give my eyes a rest from them, which as I am sure you know, was not possible before!
Sclerals have kept me, and many others, off the operating table so it is definitely worth finding out if they will work for you. Please bear in mind that although we do have similarities, it appears that everyone with KC seems to be different so please ensure you find the right solution for you, be it scleral lenses or maybe a corneal transplant. The most important thing is that you make sure you look at all the options open to you.
If your practitioner cannot help you with scleral lenses, ask your GP if you can be referred to your nearest eye hospital and hopefully they will be able to help. Alternatively, get referred to Moorfields Eye Hospital in London if you live near enough. If you get really stuck, email me on sue.ingram@virgin.net for more info.
Both take your time in finding out what is best for your own situation. Let us know how you get on as it always helps others to know the experiences you have been through just in case they are coming up against the same problems. Take care both and keep smiling :-) SUE
Like both of you, my eyes stopped being tolerant to rgp corneal lenses (after more than 20 years' wear). For over a year Moorfields did their best to come up with all sorts of rgp corneal lenses to see if they would fit properly but no luck. I was at the point where I thought that I would have to have a corneal transplant (as yourselves), when I was then offered scleral lenses; these cover your whole eye and are so infinitely more comfortable than corneal lenses. They have also enabled me to be able to wear my corneal lenses again due to the fact that I am able to give my eyes a rest from them, which as I am sure you know, was not possible before!
Sclerals have kept me, and many others, off the operating table so it is definitely worth finding out if they will work for you. Please bear in mind that although we do have similarities, it appears that everyone with KC seems to be different so please ensure you find the right solution for you, be it scleral lenses or maybe a corneal transplant. The most important thing is that you make sure you look at all the options open to you.
If your practitioner cannot help you with scleral lenses, ask your GP if you can be referred to your nearest eye hospital and hopefully they will be able to help. Alternatively, get referred to Moorfields Eye Hospital in London if you live near enough. If you get really stuck, email me on sue.ingram@virgin.net for more info.
Both take your time in finding out what is best for your own situation. Let us know how you get on as it always helps others to know the experiences you have been through just in case they are coming up against the same problems. Take care both and keep smiling :-) SUE
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gemstone@umbilical.demon.
Dave said:
I too suffer from light sensitivity and my optician suggested
photochromic sunglasses. I find them particularly good for
driving, especially as you don't have to keep taking them off
and putting them on!
I've had photochromics recommended to me - most strongly,
surprisingly enough, by someone who sold them! I never found
them that good - they didn't change fast enough, eg. when coming out of the MErsey Tunnel into sunlight. Nor were they really
dark enough - I had a pair of clip-ons to go over them in the end.
I find polaroid sunglasses - that is, ones iwth polarising
lenses, not just Polaroid the brand name - good as they cut down the glare - but has anyone else found it ever so hard to get
hold of them?? - when my old pair broke, all I could find where
opticians who would put a polarising coat onto a pair of
prescription spectacles and charged 100 quid or so!! I've now
got new pairs from a mail order catalogue I got from the RNIB
showroom - without VAT if one is registered, not too expensive,
and with wrapround sidepieces and a top-shade, very useful
against those cross-ways low sun rays. And they'll sit on my
forehead if I go somewhere darker temporarily. Only thing they
won't do is fit under my riding hat, so I have to swap to
another pair before I get on a horse!
Rosemary
--
Rosemary F. Johnson
I too suffer from light sensitivity and my optician suggested
photochromic sunglasses. I find them particularly good for
driving, especially as you don't have to keep taking them off
and putting them on!
I've had photochromics recommended to me - most strongly,
surprisingly enough, by someone who sold them! I never found
them that good - they didn't change fast enough, eg. when coming out of the MErsey Tunnel into sunlight. Nor were they really
dark enough - I had a pair of clip-ons to go over them in the end.
I find polaroid sunglasses - that is, ones iwth polarising
lenses, not just Polaroid the brand name - good as they cut down the glare - but has anyone else found it ever so hard to get
hold of them?? - when my old pair broke, all I could find where
opticians who would put a polarising coat onto a pair of
prescription spectacles and charged 100 quid or so!! I've now
got new pairs from a mail order catalogue I got from the RNIB
showroom - without VAT if one is registered, not too expensive,
and with wrapround sidepieces and a top-shade, very useful
against those cross-ways low sun rays. And they'll sit on my
forehead if I go somewhere darker temporarily. Only thing they
won't do is fit under my riding hat, so I have to swap to
another pair before I get on a horse!
Rosemary
--
Rosemary F. Johnson
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Janet Manning
Hi Patricia and Chris
I had transplants in both eyes in 1999 and was told when I later got referred to Moorfields that they were not necessary! Please explore ALL possible options before you go down this route. I support Sue in her crusade for sclerals. They are fantastic. If I'd known about them pre op, I'd still have my own corneas. They may look intimidating to start with, but I found them easier to insert and remove than soft perms. I wore them 8 hours the first day. They are very comfortable. I've never had to remove grit or dust and they keep the pollen out of my eyes.
As Sue says we are all different and you may need a graft at some point. If it comes to this be prepared to be patient and recognise there'll be some ups and downs. I had a local anaesthetic because generals always result in respiratory problems post op for me. It was brilliant, like having dentistry work, with 4 hours of pain relief afterwards. Your vision is so squiffy with the anaesthetic that you cannot see any instruments, (my biggest fear!!!) just lights and shadows. I used self hypnosis to relax totally and experienced no pain at all. I was home 45 mins after coming out of theatre with access to a help line if I needed it. What you do need is industrial strength painkillers for the first night. I learnt that after the first experience and had a good night's sleep the second time.
There followed over a year of ups and downs. Initially you need heaps of eye drops, some of which have preservative in, which means you cannot wear lenses. Stitches were adjusted - steroid drops which raised my eye pressure - more drops and drugs to reduce it. A rejection episode - more steroids and no lens. Stitches removed about a year later - more steroid drops and no lenses. None of these things is so terrible in itself, but they result in not being able to wear lenses, which disrupts work/study. I ended up leaving my job and retraining for a new career, which I can control more to what my eyes can stand.
With regard to exercise. I was told that I could do aerobic exercise as long as it was not high impact and did not involve anything face down on the floor - after about 2 months.
You are welcome to email me on janetmanning@lineone.net
Let us know how you get on. Janet
I had transplants in both eyes in 1999 and was told when I later got referred to Moorfields that they were not necessary! Please explore ALL possible options before you go down this route. I support Sue in her crusade for sclerals. They are fantastic. If I'd known about them pre op, I'd still have my own corneas. They may look intimidating to start with, but I found them easier to insert and remove than soft perms. I wore them 8 hours the first day. They are very comfortable. I've never had to remove grit or dust and they keep the pollen out of my eyes.
As Sue says we are all different and you may need a graft at some point. If it comes to this be prepared to be patient and recognise there'll be some ups and downs. I had a local anaesthetic because generals always result in respiratory problems post op for me. It was brilliant, like having dentistry work, with 4 hours of pain relief afterwards. Your vision is so squiffy with the anaesthetic that you cannot see any instruments, (my biggest fear!!!) just lights and shadows. I used self hypnosis to relax totally and experienced no pain at all. I was home 45 mins after coming out of theatre with access to a help line if I needed it. What you do need is industrial strength painkillers for the first night. I learnt that after the first experience and had a good night's sleep the second time.
There followed over a year of ups and downs. Initially you need heaps of eye drops, some of which have preservative in, which means you cannot wear lenses. Stitches were adjusted - steroid drops which raised my eye pressure - more drops and drugs to reduce it. A rejection episode - more steroids and no lens. Stitches removed about a year later - more steroid drops and no lenses. None of these things is so terrible in itself, but they result in not being able to wear lenses, which disrupts work/study. I ended up leaving my job and retraining for a new career, which I can control more to what my eyes can stand.
With regard to exercise. I was told that I could do aerobic exercise as long as it was not high impact and did not involve anything face down on the floor - after about 2 months.
You are welcome to email me on janetmanning@lineone.net
Let us know how you get on. Janet
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TJStim2299@aol.com
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Ian Pearson
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Rini Patel
Ive had corneal grafts in both eyes first in 1993 and the second in 1994. When I was first diagnosed it was extremely difficult as I was going through my GCSEs. Not only was the constant watering of the eye uncomfortable but I also felt very self concious because my eye had become extremely water logged and turned to a bright whitish blue colour. I was taken to Moorfields and had the grafts and after many check ups, irritating stitches, eye drops and rejections my eyes had finally settled, (Thanks Dr Gartry). I am now leading a normal life and although I am short sighted I manage with glasses. I had completely forgotten about my corneal grafts until I stumbled across this website. Its good to forget about it and continue as normal but although we take the time to think about and appreciate all the help and support we get from medical professionals and family and friends we sometimes forget about the person whose life it took to provide us the transplants. So I would just like to appreciate and be grateful to the people who carry donor cards and help those living to a better quality of life.
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freddy
dear Patricia
I have had a graft and was told little exercise for two weeks, 4kgs only to lift. Then gradually to build up my time. The key thing is that exercise increases your eye pressure. To be honest it did not hold me back, and I flet able to exercise. For me what was far worse has been the general advice to avoid public swimming pools. I have not actually been swimming for 18 months and when I asked the surgeon he said yes I could but there are risks. I came off my eye drops in July!
I just go to the gym now! Freddy
I have had a graft and was told little exercise for two weeks, 4kgs only to lift. Then gradually to build up my time. The key thing is that exercise increases your eye pressure. To be honest it did not hold me back, and I flet able to exercise. For me what was far worse has been the general advice to avoid public swimming pools. I have not actually been swimming for 18 months and when I asked the surgeon he said yes I could but there are risks. I came off my eye drops in July!
I just go to the gym now! Freddy
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John Smith
This may sound like an odd one, but I'm sure people on this list will be able to answer it...
The cone in my left eye has got significantly worse since my right corneal graft back in January. Because of a rejection episode, my consultant won't do the planned graft for the left eye, and suggested that may need to see Ken Pullum for sclerals, but that I should see Dr. Moodaley first to make sure.
Dr. Moodaley confirmed that I should see Ken Pullum. My optician has suggested the same thing.
I've just got my appointment letter from Moorfields through, and I'm to see Prof. Buckley.
No disrespect to him, but do people think that Prof. Buckley is suitable to look into my getting a scleral lens, or should I phone Moorfields to change to an appointment with Ken?
Regards,
John
The cone in my left eye has got significantly worse since my right corneal graft back in January. Because of a rejection episode, my consultant won't do the planned graft for the left eye, and suggested that may need to see Ken Pullum for sclerals, but that I should see Dr. Moodaley first to make sure.
Dr. Moodaley confirmed that I should see Ken Pullum. My optician has suggested the same thing.
I've just got my appointment letter from Moorfields through, and I'm to see Prof. Buckley.
No disrespect to him, but do people think that Prof. Buckley is suitable to look into my getting a scleral lens, or should I phone Moorfields to change to an appointment with Ken?
Regards,
John
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