Jane, Gillian and Janet
Thank you for responding and giving us your insights. My wife and I are leaning towards postponing the surgery to give ourselves more time to gather information. The children want to go ahead and get it "over" with. Having undergone two surgeries for different problems myself, I know that getting it "over" with is not something under the patient's control.
Thanks, again, for sharing your experiences.
Yussuf
Quicktopic posts: Nov 2003
Moderators: Anne Klepacz, John Smith, Sweet
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KateF
Hi Yussuf
interesting to read about your family.
My son age 18 has KC both eyes, severe, but he has downs' and poor lung function and we feel that surgery is not an option. Plus he would never understand not to touch his stitches !! So first we grieved that he was becoming blind - then we found someone who would fit him with sclerals - and now he can see!
not QUITE as simple as that but we are working on getting proficient at inserting lenses in non-co-operating persons!! (somewhere between wrestling and rugby!)
I practised scleral insertion on the hospital staff and it only takes a few seconds really.
Really really recommend sclerals wholeheartedly. Any school staff and Dale's sisters who weren't sure and were put off by the size of each lens (18mm) soon changed their minds when they witnmessed how happy and comfortable Dale is when wearing them.
Dale doesnt speak much, bt first time in both lenses he said "Mum ? happy!"
kate and Dale
interesting to read about your family.
My son age 18 has KC both eyes, severe, but he has downs' and poor lung function and we feel that surgery is not an option. Plus he would never understand not to touch his stitches !! So first we grieved that he was becoming blind - then we found someone who would fit him with sclerals - and now he can see!
not QUITE as simple as that but we are working on getting proficient at inserting lenses in non-co-operating persons!! (somewhere between wrestling and rugby!)
I practised scleral insertion on the hospital staff and it only takes a few seconds really.
Really really recommend sclerals wholeheartedly. Any school staff and Dale's sisters who weren't sure and were put off by the size of each lens (18mm) soon changed their minds when they witnmessed how happy and comfortable Dale is when wearing them.
Dale doesnt speak much, bt first time in both lenses he said "Mum ? happy!"
kate and Dale
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KateF
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David White
Hi one and all - first time I've posted on this message board and was wondering if anyone had experienced what I'm suffering from at the moment or perhaps had some advice.
I was diagnosed with pellucid KC when I was 17 and am now 31. Although my vision with spectacles is not good, certainly not good enough to drive and difficult to work with a computer, I have been able to get by well with a 'thicker' soft lens in my left eye and a 'normal' soft lens in my right eye for several years now, although I have PKC in both eyes.
Originally, i was fitted with a combination lens, which had a rigid centre and soft skirt, which caused some vascularisation, although not too bad according to my consultant.
Anyhow, i have recently begun to really suffer from very red and sore eyes, especially in any building with air conditioning, bars/pubs with smoky atmospheres, even supermarkets with air blowing out from their freezers!! I now can't wear a lens in my right eye at work, as it becomes bloodshot very quickly and very uncomfortable. This all began when I was on holiday in Morroco a month or so ago, where it was very dry and dusty.
Although the hospital have checked everything out, they can find no evidence of infection or damage to the surface fo the cornea. They are currently ordering me new lenses to see if it is a problem with the lens itself.
This feels like a very minor thing when compared to many of the problems KC sufferers encounter, but it is starting to impact on my quality of life, quite apart from permanently looking as if I have been out on the beers all night! I am going through 'artifical tear' eye drops at a rate of knots, but to no real effect.
If anyone has had a similar experience, suggestions as to what might have caused this to suddenly start happening, or things I could do to try and minimise the redness of my eyes, i would be very grateful.
Thanks in advance
David
I was diagnosed with pellucid KC when I was 17 and am now 31. Although my vision with spectacles is not good, certainly not good enough to drive and difficult to work with a computer, I have been able to get by well with a 'thicker' soft lens in my left eye and a 'normal' soft lens in my right eye for several years now, although I have PKC in both eyes.
Originally, i was fitted with a combination lens, which had a rigid centre and soft skirt, which caused some vascularisation, although not too bad according to my consultant.
Anyhow, i have recently begun to really suffer from very red and sore eyes, especially in any building with air conditioning, bars/pubs with smoky atmospheres, even supermarkets with air blowing out from their freezers!! I now can't wear a lens in my right eye at work, as it becomes bloodshot very quickly and very uncomfortable. This all began when I was on holiday in Morroco a month or so ago, where it was very dry and dusty.
Although the hospital have checked everything out, they can find no evidence of infection or damage to the surface fo the cornea. They are currently ordering me new lenses to see if it is a problem with the lens itself.
This feels like a very minor thing when compared to many of the problems KC sufferers encounter, but it is starting to impact on my quality of life, quite apart from permanently looking as if I have been out on the beers all night! I am going through 'artifical tear' eye drops at a rate of knots, but to no real effect.
If anyone has had a similar experience, suggestions as to what might have caused this to suddenly start happening, or things I could do to try and minimise the redness of my eyes, i would be very grateful.
Thanks in advance
David
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Al
I would appreciate if anyone should reply to this post.
I have had Keratoconus for 35 year. I am 41 and have three children. I am the sole support of my family and now find myself squinting, driving erratically, needing to zoom all my computer documents up to 120% (I am a Technical Writer and use the PC all day)The situation has gotten so bad that I am seeing a specialist next week. In the past, I have been told that nothing can be done for me I do not know what to expect next week and am worried. I have head and neck pain as well as my vision has deterioted greatly over the past 3 months. I see the world out of my left eye. The right eye sees nothing but a white blur and contact lenses do not fit me. Any advice would be greatly appreciated.
Regards,
Al
I have had Keratoconus for 35 year. I am 41 and have three children. I am the sole support of my family and now find myself squinting, driving erratically, needing to zoom all my computer documents up to 120% (I am a Technical Writer and use the PC all day)The situation has gotten so bad that I am seeing a specialist next week. In the past, I have been told that nothing can be done for me I do not know what to expect next week and am worried. I have head and neck pain as well as my vision has deterioted greatly over the past 3 months. I see the world out of my left eye. The right eye sees nothing but a white blur and contact lenses do not fit me. Any advice would be greatly appreciated.
Regards,
Al
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Janet Manning
Hi Al,
Don't know which country you are in, but suggest you try scleral contact lenses. They cover most of the eye so fit cone shaped corneas. You will find info about them on this site. If you need help to find a hospital near you which fits them, please post again and I will respond. In the meantime, are you sure you should be driving? The last thing your kids need is an injured Dad!
Scleral lenses may completely change the level of correction you can achieve. I get virtually no correction with glasses and that only in one eye, but with sclerals I can drive legally.
Let us know how you get on.
Janet
Don't know which country you are in, but suggest you try scleral contact lenses. They cover most of the eye so fit cone shaped corneas. You will find info about them on this site. If you need help to find a hospital near you which fits them, please post again and I will respond. In the meantime, are you sure you should be driving? The last thing your kids need is an injured Dad!
Scleral lenses may completely change the level of correction you can achieve. I get virtually no correction with glasses and that only in one eye, but with sclerals I can drive legally.
Let us know how you get on.
Janet
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Al
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Andrew Thomas MacLean
Dear Al
janet will probably be able to give you more information that I can about what we call scleral lenses in the UK. I think in the United States they are probably called "Heptic Lenses".
----------
>From: QT - Al <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Tue, Nov 11, 2003, 11:39 pm
>
< replied-to message removed by QT >
janet will probably be able to give you more information that I can about what we call scleral lenses in the UK. I think in the United States they are probably called "Heptic Lenses".
----------
>From: QT - Al <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Tue, Nov 11, 2003, 11:39 pm
>
< replied-to message removed by QT >
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Al
Dear David and Janet,
I am researching both scleral and heptic lens. I am squinting a lot more today. I have even been trying 75,000 IU of vitamin A each day as a nutritional supplement. Thanks for your input I am going to see the specialist on 17-NOV-2003. I can be reached at zollico@aol.com if anybody has any more information
Regards
Al
I am researching both scleral and heptic lens. I am squinting a lot more today. I have even been trying 75,000 IU of vitamin A each day as a nutritional supplement. Thanks for your input I am going to see the specialist on 17-NOV-2003. I can be reached at zollico@aol.com if anybody has any more information
Regards
Al
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