This my first post, and I have Keratoconus since 2006, But due to working overseas I never got around to visiting the eye surgical guy. A month ago i believed a private medical doctor and it would be all fix in a couple of months and no worries.
But i learned left eye could need a transplant now and right is really advance. They said he even notice the membrain coming through the Cornea. He transferred me to advance eye clinic which does research and clinical trials
To be honest i am really scared about the appointment next month, and saturday my site started to get more blurry. I thought i was tired and it wont.
It seems my sight is decreasing every couple of months, and gets very tired is this normal?
Any advice would be great from people which have had surgery done and have got advance Keratoconus
Is this normal?
Moderators: Anne Klepacz, John Smith, Sweet
- Anne Klepacz
- Committee

- Posts: 2300
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Is this normal?
Hello and welcome to the forum,
Keratoconus varies a lot between individuals in how it progresses and how much it affects vision, so it's hard to say what is 'normal'. But there are lots of us here who have had successful transplants (mine in both eyes were around 25 years ago). So there's definitely life after a graft! I'm not clear from what you say whether you currently have glasses or contact lenses to improve your sight. There are quite a few different types of contact lenses for KC these days which can be used for advanced KC so do ask about the possibility of lenses at your appointment for one or both eyes.
Most people with KC find their vision gets worse as the day wears on, and it can also vary from day to day. It's definitely normal to feel tired when you're struggling to see properly When my vision was at it's worst pre-grafts, I had constant headaches and felt tired most of the time.
If you'd like more information about transplants and other options for KC before your appt, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you our information booklet and the DVD of our 2009 conference, which covered the options in more detail.
You're in the right place to ask all the questions you need to. And do let us know how you get on next month.
Anne
Keratoconus varies a lot between individuals in how it progresses and how much it affects vision, so it's hard to say what is 'normal'. But there are lots of us here who have had successful transplants (mine in both eyes were around 25 years ago). So there's definitely life after a graft! I'm not clear from what you say whether you currently have glasses or contact lenses to improve your sight. There are quite a few different types of contact lenses for KC these days which can be used for advanced KC so do ask about the possibility of lenses at your appointment for one or both eyes.
Most people with KC find their vision gets worse as the day wears on, and it can also vary from day to day. It's definitely normal to feel tired when you're struggling to see properly When my vision was at it's worst pre-grafts, I had constant headaches and felt tired most of the time.
If you'd like more information about transplants and other options for KC before your appt, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you our information booklet and the DVD of our 2009 conference, which covered the options in more detail.
You're in the right place to ask all the questions you need to. And do let us know how you get on next month.
Anne
-
Mousework
- Regular contributor

- Posts: 65
- Joined: Mon 23 Jul 2012 2:43 pm
- Keratoconus: Yes, I have KC
- Vision: Other
Re: Is this normal?
thank you for your reply
The first eye doctor said the shape of my eye is to sphere shaped for contact lenses, and because he couldnt do nothing for me. he didnt charge me. At the moment i have no contact lenses or glasses. I have head aches all the time and i cant judge object distances any more. Cake shop the girl put the box on the top, and i went for it. the cakes went flying on the floor.
I going to beg for x-linking with implanted lenses or intacts
so i can wear normal glasses
The first eye doctor said the shape of my eye is to sphere shaped for contact lenses, and because he couldnt do nothing for me. he didnt charge me. At the moment i have no contact lenses or glasses. I have head aches all the time and i cant judge object distances any more. Cake shop the girl put the box on the top, and i went for it. the cakes went flying on the floor.
I going to beg for x-linking with implanted lenses or intacts
so i can wear normal glasses
-
ahmed1
- Contributor

- Posts: 19
- Joined: Sat 21 Jul 2012 8:18 am
- Keratoconus: Yes, I have KC
- Vision: On the waiting list for a graft
Re: Is this normal?
I know how you feel"( u sound just like me:( m so tired and headachy all the time that I might as wepl give up:(
- Anne Klepacz
- Committee

- Posts: 2300
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Is this normal?
Although there are a few people who can't tolerate contact lenses at all, with the variety of different lens types made for KC these days, it's unusual to have a corneal shape that can't be fitted with some sort of lens. If all else fails, scleral lenses (large lenses which cover the whole of the eye) don't touch the cornea and can be made to go over all sorts of cone shapes. It has to be said that not all hospitals offer these lenses though.
Anne
Anne
- GarethB
- Ambassador

- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Re: Is this normal?
Mousework wrote:I going to beg for x-linking with implanted lenses or intacts
so i can wear normal glasses
Please be guided by the consultant when you discuss this because again some people are unsuitable for this process plus there are no guarentees that vision can be correted sufficently to mean you can wear normal glasses.
Gareth
-
Mousework
- Regular contributor

- Posts: 65
- Joined: Mon 23 Jul 2012 2:43 pm
- Keratoconus: Yes, I have KC
- Vision: Other
Re: Is this normal?
GarethB wrote:Mousework wrote:I going to beg for x-linking with implanted lenses or intacts
so i can wear normal glasses
Please be guided by the consultant when you discuss this because again some people are unsuitable for this process plus there are no guarentees that vision can be correted sufficently to mean you can wear normal glasses.
I have seen Optometrist and we talked about all the different lenses, he did the test to see what type and level, then he just said it was too advance as he got no readings and he saw the Descemet's membrane coming through the cornea. Then he was transferred to the orogolomistician at the advance eye clinic
he said cornea looks best deal for me
- jay87
- Regular contributor

- Posts: 146
- Joined: Tue 11 Oct 2011 9:24 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Peterborough, Cambs, UK
Re: Is this normal?
Which country are you in Mousework?
We might know of organisations in your country who cam help more
We might know of organisations in your country who cam help more
Jake 
______________________________________________________
-4.75D Left eye -9.25D Right eye Specs. No change since 2011.
Dx with KC Oct 2011. Rose K2 lenses & specs for vision, using Peroxide & Pres. Free Eye Drops
______________________________________________________
-4.75D Left eye -9.25D Right eye Specs. No change since 2011.
Dx with KC Oct 2011. Rose K2 lenses & specs for vision, using Peroxide & Pres. Free Eye Drops
-
Mousework
- Regular contributor

- Posts: 65
- Joined: Mon 23 Jul 2012 2:43 pm
- Keratoconus: Yes, I have KC
- Vision: Other
Re: Is this normal?
i am actually from the UK, but i live in Finland.
Is it normal for your eye coordination to disparate?
Is it normal for your eye coordination to disparate?
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