Hi John and Paul,
When you have a graft I don't think even the doctors know exactly what is going to be the outcome in terms of vision. I think a lot depends on the curvature of the cornea and the tension of the stitches. I had about 4 stitches removed after only 2 months after my first graft to reduce the tension in a particular direction.
There's also great variation of opinion about whether stitches should be removed or not. Different doctors witin the same hospital told me different things! I've had most of my stitches out, but have a few still imbedded. Maybe I just couldn't let them all go!!
From my experience final outcomes are very individual and depend on the original state of the eyes. I have to wear lenses as I get only minimal correction in one eye with glasses because of strong astigmatism. Without lenses I can only see the top letter on the chart with one eye and nothing with the other. Your situation may be very different, John and you may get correction with glasses.
The hospital I went to are very anti sclerals. I was told they are hard to wear and get used to and yet I found them easier to learn to use. They don't fall out and they keep up with my eye movements when I look backwards to reverse! I had to fight hard to get a referral to Moorfields. Without sclerals I would not be driving.
Whilst recognising that there will always be differences in medical opinion and practice, I think what is needed is some sort of national policy/education for eye departments on the options available for us, both in terms of surgery and lenses. Then at least we'll know what's out there and can then make an informed decision. This site has already informed me of lots of issues. Maybe we should get the eye departments to log in!!
To everybody,
Yesterday I was prescribed Cyclosporin ointment for my eyes to control allergic conjunctivitis. Is anyone else using cyclosporin? Are you experiencing any side effects? It's an immuno suppressant, so I'm a bit concerned about using it.
Janet
Quicktopic posts: Feb 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Sue B - Hertfordshire
It is very reassuring to know that other people cannot see faces either. I used to attend many meetings (often with complete strangers)and hated walking into a sea of pinkish blurred circles. When in a crowd, I rely on identifying people by their height, build, colour of their clothing etc. Must be very difficult for Freddy if his school children wear uniforms!
I can only see faces clearly when within a few yards.
I am often informed that I have walked straight past someone I know without acknowledging them and then have to apologise and convince them that I was not being standoffish
On another matter, can I make a suggestion to Anne and the rest of the Committee. The poster that is on the wall in the Red Clinic advising people about the KC Group should be much bigger. When I am sitting waiting for my appointments, I find that it is far too small to read. Perhaps others don't have a problem with it but some fellow KC patients could still be unaware that the group exists. If you are restricted to A4 size because of your print facilities, I know someone that has an A3 printer and would print a larger one for you. I can probably get it laminated as well. My last appointment was October 2001 so if the poster has changed since then please excuse me for my ignorance.
I can only see faces clearly when within a few yards.
I am often informed that I have walked straight past someone I know without acknowledging them and then have to apologise and convince them that I was not being standoffish
On another matter, can I make a suggestion to Anne and the rest of the Committee. The poster that is on the wall in the Red Clinic advising people about the KC Group should be much bigger. When I am sitting waiting for my appointments, I find that it is far too small to read. Perhaps others don't have a problem with it but some fellow KC patients could still be unaware that the group exists. If you are restricted to A4 size because of your print facilities, I know someone that has an A3 printer and would print a larger one for you. I can probably get it laminated as well. My last appointment was October 2001 so if the poster has changed since then please excuse me for my ignorance.
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John Smith
Oh, Sue B, I know how you feel. People at work say hello to me in the lift or corridor, and I have NO IDEA who they are most of the time!
At least when I've got my contact lens in, I've got a fair chance... but I can't wear it all day, so tend to put it in about 10:30, so I'm almost blind until then!
At least when I've got my contact lens in, I've got a fair chance... but I can't wear it all day, so tend to put it in about 10:30, so I'm almost blind until then!
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Amanda Stigle
Dear Janet
Thanks for the e-mail,will send a reply direct. Glad you have got some treatment sorted.
Where do I start with replying to the rest of your message!
Yes, the plan is to eventually have an overall National Policy, but this is a long way off. As Moorfields is the centre of Opthalmic excellence, ideas and discussions with optomotrists, opthalmologists are underway here.
We also need to find out more about Keratoconus,the age of diagnosis, the extent of KC ,the number of people affected in th UK,we only have 500 registered members, there are many people who make up approx. 80-85% who manage well with glasses or corneal lenses and do not therefore feel the need to register with an organisation like ours.
I WOULD LIKE TO MAKE AN APPEAL TO ALL OF YOU OUT THERE WHO HAVE NOT REGISTERED WITH THIS SUPPORT GROUP TO DO SO. THIS WOULD ENABLE US TO INVOLVE YOU IN ANY RESEARCH WE UNDERTAKE. MAKING FINDINGS MORE VALID. THIS DOES NOT MEAN THAT YOU HAVE TO BE INVOLVED IN ANY OTHER WAY, AND MEMBERSHIP IS FREE.
Dear Sue B.
Thankyou for your comment on the size of the poster at Moorfields. Yes I agree! This has been discussed before but got no further! Yes please A3 would be much better.
I will be at Moorfields next on March 16th for the AGM, will you be going?
Thanks for the e-mail,will send a reply direct. Glad you have got some treatment sorted.
Where do I start with replying to the rest of your message!
Yes, the plan is to eventually have an overall National Policy, but this is a long way off. As Moorfields is the centre of Opthalmic excellence, ideas and discussions with optomotrists, opthalmologists are underway here.
We also need to find out more about Keratoconus,the age of diagnosis, the extent of KC ,the number of people affected in th UK,we only have 500 registered members, there are many people who make up approx. 80-85% who manage well with glasses or corneal lenses and do not therefore feel the need to register with an organisation like ours.
I WOULD LIKE TO MAKE AN APPEAL TO ALL OF YOU OUT THERE WHO HAVE NOT REGISTERED WITH THIS SUPPORT GROUP TO DO SO. THIS WOULD ENABLE US TO INVOLVE YOU IN ANY RESEARCH WE UNDERTAKE. MAKING FINDINGS MORE VALID. THIS DOES NOT MEAN THAT YOU HAVE TO BE INVOLVED IN ANY OTHER WAY, AND MEMBERSHIP IS FREE.
Dear Sue B.
Thankyou for your comment on the size of the poster at Moorfields. Yes I agree! This has been discussed before but got no further! Yes please A3 would be much better.
I will be at Moorfields next on March 16th for the AGM, will you be going?
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Sue B - Hertfordshire
Amanda,
Not sure if I will get to the AGM on 16th. I am going away on 20th Feb and do not return until 12th March. It will depend on the backlog I find when I get home, but I will get there if I can. Meanwhile, if you want to e-mail me a Word document with the poster contents, I can forward it to my colleague for printing A3 size. My e-mail address is sueburbidge@aol.com
Not sure if I will get to the AGM on 16th. I am going away on 20th Feb and do not return until 12th March. It will depend on the backlog I find when I get home, but I will get there if I can. Meanwhile, if you want to e-mail me a Word document with the poster contents, I can forward it to my colleague for printing A3 size. My e-mail address is sueburbidge@aol.com
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Ian - Oxfordshire
All,
I saw an interesting tip for those of us who suffer when inserting a cold lens during the Winter months...
Soak the lenses (IN THE CASE!) in warm water before inserting the lens - this then causes less of a shock to the eye on insertion.
You may wish to discuss this with your practitioner before doing so just in case of any complications.
Regards
Ian
I saw an interesting tip for those of us who suffer when inserting a cold lens during the Winter months...
Soak the lenses (IN THE CASE!) in warm water before inserting the lens - this then causes less of a shock to the eye on insertion.
You may wish to discuss this with your practitioner before doing so just in case of any complications.
Regards
Ian
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Sarah
On a lighter note, I took my family to see Monsters Inc at the weekend. There is one point in the film where Mike, the green monster with one very large eye, inserts a huge scleral-type contact lens into his enormous eye. My daughter is 6 and has often seen her Nannie, Dianne, who has KC, insert her lens, commented that Mike's lens was just like Nannie's!
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John Smith
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Robert Smith
Hi everybody
This is getting to be quite a 'chatroom'! It is 5 weeks since the graft. Sight is much better but still blurry and most of the time I don't even notice my eye now.
I was back at the clinic for a regular check up and, like Janet, have been told that I have to have the stitches 'adjusted' as they are too tight in one direction and the curvature is a bit uneven. What slightly worried me was that I was told they would do it in the next 2 - 4 weeks but the appointment card came today for the end of March - nearly 6 weeks away! Ah well.
I tend very much to agree with Janet - it appears that everyone is different and this is not 'rocket science'. The doctors can't guarantee results and this is very like most medicine - doctors aren't either magicians nor miracle workers - they do their best but the body is far more complex than any of us can understand.
I am glad I had the graft and feel that it is a good step forward. Even if I lost the sight in my good eye now I would not be totally disabled. I am also VERY lucky that I only have KC in one eye.
On the question of greater awareness am I right in beliving that KC affects about 1 person in 10,000? If I am there are only 5000 of us in the whole country - pretty rare!
On the question of stitches I wanted to ask Janet how she got on after having them removed - how long did it take to recover after? Is it like going back several steps?
To John - I was amazed to hear that you are back at work. I find that I get tired quickly and if I overdo it my eye starts to ache. My employer has been very good and has told me to have more time off rather than go back and put my eye at risk (having said that this is my first time off sick in over 25 years of employment!)
Best wishes to all
Robert
This is getting to be quite a 'chatroom'! It is 5 weeks since the graft. Sight is much better but still blurry and most of the time I don't even notice my eye now.
I was back at the clinic for a regular check up and, like Janet, have been told that I have to have the stitches 'adjusted' as they are too tight in one direction and the curvature is a bit uneven. What slightly worried me was that I was told they would do it in the next 2 - 4 weeks but the appointment card came today for the end of March - nearly 6 weeks away! Ah well.
I tend very much to agree with Janet - it appears that everyone is different and this is not 'rocket science'. The doctors can't guarantee results and this is very like most medicine - doctors aren't either magicians nor miracle workers - they do their best but the body is far more complex than any of us can understand.
I am glad I had the graft and feel that it is a good step forward. Even if I lost the sight in my good eye now I would not be totally disabled. I am also VERY lucky that I only have KC in one eye.
On the question of greater awareness am I right in beliving that KC affects about 1 person in 10,000? If I am there are only 5000 of us in the whole country - pretty rare!
On the question of stitches I wanted to ask Janet how she got on after having them removed - how long did it take to recover after? Is it like going back several steps?
To John - I was amazed to hear that you are back at work. I find that I get tired quickly and if I overdo it my eye starts to ache. My employer has been very good and has told me to have more time off rather than go back and put my eye at risk (having said that this is my first time off sick in over 25 years of employment!)
Best wishes to all
Robert
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Scott Waters
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