Dan - "Rose K" lenses are just a particular sort of RGP lenses especially suitable for those of us with KC. If anything, they should be slightly cheaper than "standard" lenses, as they're easier to fit. But they're about the same price (I pay £60/lens) as they're more awkward to manufacture.
Sue and Janet - I passed your comments on to my friend Claire, and she's asked me to pass on her thanks. She's going to try the vaseline trick. I'll keep you informed of any progress.
John
Quicktopic posts: Mar 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Kim Remmington
Dear Jay and Sue,
My consultant at Sunderland Eye Infirmary has suggested this operation ( as well as DLK) if I'm not successful with finding a lens I can wear. I don't know much about it and he did give me a web address, which I have lost, but it could well be the address you gave. If I had it done it would be a medical trial, so I guess not many have been done in the UK. It is something that I will do before I go for a graft, as if it is not successful, a graft is still an option.
Hopefully I will have success with Rose K lenses. They have been trying to fit me with them for about 6 months now! If anyone remembers my previous emails, I was wearing my brilliant Softperm lenses but had to try other lenses as these are stopping the oxygen getting to my eyes. Well it must be a year ago when this all started and I'm still wearing the Softperm. Great for my eyesight, but I am beginning to wonder what damage they are doing. If they don't get a result with the Rose K then I will be trying Sclerals. I have moved hospitals, as the previous one wasn't willing to try this option for me. Anyway at Sunderland they have a guy who is very keen on Sclerals, so hopefully I'll be in good hands, as we don't have the 'great' Ken Pulman up here!!
Janet & Sue B
Thanks for the tip on vaseline, I have terrible eczema around my eyes and usually use hydrocortisone. Not good. Tonight though, I am going to pile the good old vaseline on.
My consultant at Sunderland Eye Infirmary has suggested this operation ( as well as DLK) if I'm not successful with finding a lens I can wear. I don't know much about it and he did give me a web address, which I have lost, but it could well be the address you gave. If I had it done it would be a medical trial, so I guess not many have been done in the UK. It is something that I will do before I go for a graft, as if it is not successful, a graft is still an option.
Hopefully I will have success with Rose K lenses. They have been trying to fit me with them for about 6 months now! If anyone remembers my previous emails, I was wearing my brilliant Softperm lenses but had to try other lenses as these are stopping the oxygen getting to my eyes. Well it must be a year ago when this all started and I'm still wearing the Softperm. Great for my eyesight, but I am beginning to wonder what damage they are doing. If they don't get a result with the Rose K then I will be trying Sclerals. I have moved hospitals, as the previous one wasn't willing to try this option for me. Anyway at Sunderland they have a guy who is very keen on Sclerals, so hopefully I'll be in good hands, as we don't have the 'great' Ken Pulman up here!!
Janet & Sue B
Thanks for the tip on vaseline, I have terrible eczema around my eyes and usually use hydrocortisone. Not good. Tonight though, I am going to pile the good old vaseline on.
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Nazier - Manchester
Hi All,
I have keratoconus in both eyes for at least 10 years now.
I was initially treated by my local opticans (D&A), but now am a regular outpatient at the Manchester Royal Eye Hospital. The treatment i am receiving is excellent, I get good advise and support. My KC is well advanced, I had a corneal graft in my left eye in August 2000, which I must say has made a great improvement although at the moment I am still having stiches removed every 3-4 months, the care for this eye (i hope) will be complete in a few months when I will be fitted with a soft lens or glasses!.
My right eye is now becoming more intolerent of my contact lens, I have been advised not to wear the lens for at least 5 weeks, which is impossible because of all the strains on my family and work. The hospital understands this and have provided the necessary support and medication to allow me wear my lens. The consultant is now considering a graft on my second eye. I'll keep you informed on progress.
I have keratoconus in both eyes for at least 10 years now.
I was initially treated by my local opticans (D&A), but now am a regular outpatient at the Manchester Royal Eye Hospital. The treatment i am receiving is excellent, I get good advise and support. My KC is well advanced, I had a corneal graft in my left eye in August 2000, which I must say has made a great improvement although at the moment I am still having stiches removed every 3-4 months, the care for this eye (i hope) will be complete in a few months when I will be fitted with a soft lens or glasses!.
My right eye is now becoming more intolerent of my contact lens, I have been advised not to wear the lens for at least 5 weeks, which is impossible because of all the strains on my family and work. The hospital understands this and have provided the necessary support and medication to allow me wear my lens. The consultant is now considering a graft on my second eye. I'll keep you informed on progress.
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Catherine (Peterborough)
Just a quickie on vaseline - I also used hydrocortisone for a long while but found most alternatives too heavy or greasy.
If vaseline doesn't work for you, it would be worth trying calendula cream, made by Nelsons and available from the homeopathic section of most Boots stores in green and white packaging. I use this each night as I go to bed - calendula (marigold) is a herb commonly used to heal skin and it generally gets the skin soft again by morning, even when I've given in and given my eyes a good rubbing session! It's also good to help heal the skin if you've had to over-use hydrocortisone/betnovate etc creams on eczema and psoriasis.
If vaseline doesn't work for you, it would be worth trying calendula cream, made by Nelsons and available from the homeopathic section of most Boots stores in green and white packaging. I use this each night as I go to bed - calendula (marigold) is a herb commonly used to heal skin and it generally gets the skin soft again by morning, even when I've given in and given my eyes a good rubbing session! It's also good to help heal the skin if you've had to over-use hydrocortisone/betnovate etc creams on eczema and psoriasis.
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Dhiren-London
Firstly id like to say hello to everyone and comment on wot a useful site this is. i was diagnosed with KC at the age of 13 had a graft at 17 i am 22 now, and to behonest im loving life! Iv tried scleral lenses & RGP's with help from Ken Pullum at moorfields which were all fantastic, but i believe the best choice for me was a graft. Secondly id like to thank Ken Pullum for his lecture on scleral lens at my Universtiy, Aston uni in birmingham, very well presented!
thank you!
thank you!
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Ady-
Hi all, my first time on here.
I am 27, live in Bidford on Avon, Warwickshire, I was given glasses about 14 years ago by an optician who did'nt detect I had KC, after about 6 months I then saw another optician who told me I had KC, gave me some hard contact lenses and referred me to Stratford on Avon eye hospital. I couldn't get on with the contact lenses. I lost one on the first day of having them and after replacments I found they just felt like grit in my eyes and kept sliding everywhere in my eyes except actually sitting on the cornea itself. so I stopped wearing the contacts on the advice from the hospital and just let the hospital moniter my eyes behaviour for about 2 years knowing the only option was a cornea graph. this was about 10 years ago and knowing the only route, I stopped going to the hospital and a shut the door on it due to me being petrified of the operation.
Last week I decided my vision was suffering more and the paranoia of "can I read that number plate in front" so I went to Vision Express in Redditch, and told the optician my past experiences The guy I saw was great. I explained that I had always been a offered cure by operation. It was as if they forgot about my goodish eye as soon as they saw my left eye. no one had ever offered to improve the poor sight I had but only to fix it. I asked him for glasses to improve what I had and that I was'nt after a cure anymore. Just an improvment. The optician I saw said he knows of the condition well and has given me a good improvment on my right eye. but he has told me that my left eye really is a text book case with hydrops covering the pupil which is another reason why the left eye is totally useless to me. so has given me glasses for my right eye and just a balancer in the left lens. He has told me to seriously consider the operation in my left eye as he said I have nothing to lose, and he does have a point. He has also said that he can arrange some semi hard/soft lenses, which work for a lot of people but not all, any of the available options I choose he will make sure the specialist explains everything to me in order to dispell any fears and reassure me....I like that. In no way did I once feel he was pushing me.
The amount of time the optician spent helping me and discussing routes to take was amazing and I did'nt expect this from vision express, just a pair of glasses. Its after this visit, I, for the first time feel more enthuiastic.
I am going to try the soft/hard contacts.
I asked him if laser surgery had advanced in the 10 years I had shut the door on it and he said they would never touch this condition with laser because the cornea is extremely thin and weak therefore no-one would ever take the risks.
At the end of the day when it comes to something as sensitive as our eyes, we all want the best in the world and its knowing where to dip your toes in. Thats the scary part.
I am 27, live in Bidford on Avon, Warwickshire, I was given glasses about 14 years ago by an optician who did'nt detect I had KC, after about 6 months I then saw another optician who told me I had KC, gave me some hard contact lenses and referred me to Stratford on Avon eye hospital. I couldn't get on with the contact lenses. I lost one on the first day of having them and after replacments I found they just felt like grit in my eyes and kept sliding everywhere in my eyes except actually sitting on the cornea itself. so I stopped wearing the contacts on the advice from the hospital and just let the hospital moniter my eyes behaviour for about 2 years knowing the only option was a cornea graph. this was about 10 years ago and knowing the only route, I stopped going to the hospital and a shut the door on it due to me being petrified of the operation.
Last week I decided my vision was suffering more and the paranoia of "can I read that number plate in front" so I went to Vision Express in Redditch, and told the optician my past experiences The guy I saw was great. I explained that I had always been a offered cure by operation. It was as if they forgot about my goodish eye as soon as they saw my left eye. no one had ever offered to improve the poor sight I had but only to fix it. I asked him for glasses to improve what I had and that I was'nt after a cure anymore. Just an improvment. The optician I saw said he knows of the condition well and has given me a good improvment on my right eye. but he has told me that my left eye really is a text book case with hydrops covering the pupil which is another reason why the left eye is totally useless to me. so has given me glasses for my right eye and just a balancer in the left lens. He has told me to seriously consider the operation in my left eye as he said I have nothing to lose, and he does have a point. He has also said that he can arrange some semi hard/soft lenses, which work for a lot of people but not all, any of the available options I choose he will make sure the specialist explains everything to me in order to dispell any fears and reassure me....I like that. In no way did I once feel he was pushing me.
The amount of time the optician spent helping me and discussing routes to take was amazing and I did'nt expect this from vision express, just a pair of glasses. Its after this visit, I, for the first time feel more enthuiastic.
I am going to try the soft/hard contacts.
I asked him if laser surgery had advanced in the 10 years I had shut the door on it and he said they would never touch this condition with laser because the cornea is extremely thin and weak therefore no-one would ever take the risks.
At the end of the day when it comes to something as sensitive as our eyes, we all want the best in the world and its knowing where to dip your toes in. Thats the scary part.
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Ady-Warwickshire
Sorry for the long introduction.
I work all day at a computer as a CAD operator, draughtperson, my boss has said a few times I need glasses but I've never told anyone apart from family and very close friends unless they notice the hydrop patches in my left eye. I just say I best go and get a check up when I get time and leave it at that. I get down about it in my own space but smile while I'm out and about. KC stopped me trying for my Full Motorbike licence for 10 years due to the fact that I did'nt want my eyesight picked up and destroying my car licence I have in the process. I am within the driving limits just as I found out when I plucked up the courage and passed my part1 test 2 weeks ago but I had to move a lot closer to the number plate from where we started...I felt so low and upset as I was the only one in the group that needed to move forward and by a long long way. Thats the main reason I went to see if I could just improve on my eyesight this week. just to make me a little happier when I try for my Part 2 Moterbike exam and have to do it again, praying that light conditions will be just right, not too sunny and no itchy eyes either.
I'll be quiet for a bit now...<grin>
I work all day at a computer as a CAD operator, draughtperson, my boss has said a few times I need glasses but I've never told anyone apart from family and very close friends unless they notice the hydrop patches in my left eye. I just say I best go and get a check up when I get time and leave it at that. I get down about it in my own space but smile while I'm out and about. KC stopped me trying for my Full Motorbike licence for 10 years due to the fact that I did'nt want my eyesight picked up and destroying my car licence I have in the process. I am within the driving limits just as I found out when I plucked up the courage and passed my part1 test 2 weeks ago but I had to move a lot closer to the number plate from where we started...I felt so low and upset as I was the only one in the group that needed to move forward and by a long long way. Thats the main reason I went to see if I could just improve on my eyesight this week. just to make me a little happier when I try for my Part 2 Moterbike exam and have to do it again, praying that light conditions will be just right, not too sunny and no itchy eyes either.
I'll be quiet for a bit now...<grin>
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Tony Stigle
Ady... A very touching and descriptive story that will be familiar to many KC sufferers.
I feel I just had to write something after reading it.
I hope many people will come on and offer you some support.. for my part all I can suggest is that you take the time to read as many of the previous entries as possible there are many that will help both with stories of triumph over the physical problems as well as the dilemma of driving..
Tony Stigle ( web person)
I feel I just had to write something after reading it.
I hope many people will come on and offer you some support.. for my part all I can suggest is that you take the time to read as many of the previous entries as possible there are many that will help both with stories of triumph over the physical problems as well as the dilemma of driving..
Tony Stigle ( web person)
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Amanda Stigle
Dear Ady
I also have advanced KC in both eyes and last year had hydrops in my left eye. From what you have said,it sounds like hydrops in your left eye has left you with perminent scare tissue across the visual axis, resulting in poor vision (very foggy!) If this is the case then you may have nothing to loose and "sight" to gain!
Hydrops either leaves you with perminent scare tissue or can be a blessing in diguise! I had hydrops last year in my left eye. Now I am managing with just my left eye, which would have been impossible before. It has changed my eye shape, now being less cone shaped and therefore the vision has improved.
For anyone else who is going through this. Hydrops can take anything from 4 months up to a full year to clear. So it is really important to just wait until the oedema (fluid) has cleared before making a final decision. Apparently my final result is more common than Ady's.
Thankyou Ady for sharing your experiences with us,and good luck with what ever you decide to do.
I also have advanced KC in both eyes and last year had hydrops in my left eye. From what you have said,it sounds like hydrops in your left eye has left you with perminent scare tissue across the visual axis, resulting in poor vision (very foggy!) If this is the case then you may have nothing to loose and "sight" to gain!
Hydrops either leaves you with perminent scare tissue or can be a blessing in diguise! I had hydrops last year in my left eye. Now I am managing with just my left eye, which would have been impossible before. It has changed my eye shape, now being less cone shaped and therefore the vision has improved.
For anyone else who is going through this. Hydrops can take anything from 4 months up to a full year to clear. So it is really important to just wait until the oedema (fluid) has cleared before making a final decision. Apparently my final result is more common than Ady's.
Thankyou Ady for sharing your experiences with us,and good luck with what ever you decide to do.
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Ady
Amanda & Tony
Thanks for those comforting words.
I rang Vision Express today and am going there to see there contact lens specialist 29th this month...(good friday) I do hope so...<grin>
What has amazed me is how much we can get taken for a ride. The hard contacts I was given were certanly not specially developed/fitted for my eyes so its hardly surprising I couldn't get on with them...(I only worked this out for myself tonight after learning lots on here) also when there was no-way I could get on with the contacts the specialist said thats it then. and I believed him for 10 years. I'm so glad I went to vision express last week and resources I was offered prompted me to open my eyes as it were. I wonder how many people not knowing of this site are truly faithful in believing what the first specialist tells them. I did.
I'll net you know what happens on friday.
bty I found an excellent account/diary on someones cornea graph, very interesting but I'm not that brave yet.
http://www.nwlink.com/~juliam/index.html
One really odd thing I don't understand is my left eye is totally blurred and cloudy if never mind the big top "E" it can't even see the hand pointing at it. yet when both eyes are open looking forward normally the peripheral vision on my left side seems fine as far as I can tell. very wierd and hard to put in to words.
Also anyone is welcome to mail me m0bhm@aol.com
Thanks for those comforting words.
I rang Vision Express today and am going there to see there contact lens specialist 29th this month...(good friday) I do hope so...<grin>
What has amazed me is how much we can get taken for a ride. The hard contacts I was given were certanly not specially developed/fitted for my eyes so its hardly surprising I couldn't get on with them...(I only worked this out for myself tonight after learning lots on here) also when there was no-way I could get on with the contacts the specialist said thats it then. and I believed him for 10 years. I'm so glad I went to vision express last week and resources I was offered prompted me to open my eyes as it were. I wonder how many people not knowing of this site are truly faithful in believing what the first specialist tells them. I did.
I'll net you know what happens on friday.
bty I found an excellent account/diary on someones cornea graph, very interesting but I'm not that brave yet.
http://www.nwlink.com/~juliam/index.html
One really odd thing I don't understand is my left eye is totally blurred and cloudy if never mind the big top "E" it can't even see the hand pointing at it. yet when both eyes are open looking forward normally the peripheral vision on my left side seems fine as far as I can tell. very wierd and hard to put in to words.
Also anyone is welcome to mail me m0bhm@aol.com
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