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Post Info TOPIC: Have had Keratoconus for years - but little helps


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Date: Sun Jan 13 8:55 PM, 2008
Have had Keratoconus for years - but little helps
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Dear all, I have had Keratoconus since I was 16 or so (am now 35). I have struggled with various contact lenses - that have proven uncomfortable and leave my eyes read and sore. To be honest - I have more or less abandoned the use of contacts for probably 10 years or so. I have basically just been getting by ..by squinting at the computer screen etc. Everytime I have seen a specialist for my KC they have said that the situation has not really progressed much in the past few years. However I do struggle at work and in daily life - due to poor sight.

Anyway - I am looking for advice on what to do, as I basically feel like I have ignored the problem for years now - hoping that it does not get worse. Just keen to know if other members think this is just plain stupid or whether there is a reliable way to improve my vision. I am living in London - and keen to see a specialist (as I have not seen anyone for 2 years or so). I can also travel to see a doctor that comes highly reccomended.

thanks for listening
monica

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Monica Kalia


Optometrist

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Date: Sun Jan 13 10:37 PM, 2008
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I'm sure others will reply in more detail but my first suggestion would be to see Dr Jory, who is based in London and seems to be by far the leading voice on KC in the UK. He will be able to tell you in detail all of the available options and no doubt will guide you to which is best in your scenario. With the stability you mention the much lauded cross linking may not be necessary a refractive surgery of the type "Zeus" has undergone may be worthy of consideration but again I'd reccomend the first step would be to see a specialist who can take necessary measurements and provide up to date information.
Good luck and best wishes
Alan

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Phase Two

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Date: Sun Jan 13 11:52 PM, 2008
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Welcom Monica

As always Alan you are right !

Quite simply Monika please visit www.lcrs.co.uk

-- Edited by QuintriX at 03:45, 2008-01-15

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Date: Sun Jan 13 11:58 PM, 2008
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Hi Monica,

As Alan says, Dr Jory seems quite popular among those of us who favour cross-linking.  At the age of 35, it's quite likely, I suppose, that there won't be any further progression (we're naturally cross-linked with age, I think).

Going back to the contact lens topic, there are a few new options.  Have you tried silicone hydrogel lenses?  They're not RGP's, but are more rigid than soft lenses and do have high gas permeability.  An additional step might be to try Kera-soft lenses.  They're a silicone-hydrogel based lens designed specifically for KCers.  Check out the recent post in the Contact Lens forum.

Something to discuss with your doctor, anyway.

Best of luck,

-Gary



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Date: Mon Jan 14 7:01 PM, 2008
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Dear all - thansk for your responses. I wil certainly look up Dr Jory. I did have contact lenses fit in teh US - and I belive they were a special KC contact lens but I need to find out what type they were. It is frustrating though, when you visit a contact lense specialist for KC and think they have solved the problem, only to get fited with painful lenses. I have felt guilty for years about not wearing them - but I'm sure most of you will understand. Thanks again.




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Monica Kalia


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Date: Tue Jan 15 12:47 AM, 2008
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Hello monica,

Considering all the things you have wrote and your age the kc has propably done its course.

You should at least right now after all this years to make out a CORNEAL TOPOGRAPHY and explained this by your doctor.Most likely in my opinion the cones you have at your cornea are making you contact lense intolerant.Sometimes its not about fitting correct the lense.There are other things in the middle.

I am not a keen on contacts,although with todays technology new RGps and other silicone lenses are very well made for us.

You are living in London and as people said to you, you should arrange an appointment with Doctor David Jory.Ask him if the crosslinking will flat your corneas and you will be able to wear contact lenses easily and ask him if he understands that your kc has stopped its progression.

Moreover,ask him if you can benefit from Topography guided PRK and generally what is his opinion about you should do.He is a brilliant doctor and i am very positive he will guide you to have a vision again that you are happy about it.


Best Wishes,

P.S Because you are above the age of the 35 and if you have thickness above 400microns at your eyes, Limited topography guided PRK with the safety of crosslinking afterwards will make you see definetely a whole lot better.


-- Edited by Zeus at 00:50, 2008-01-15

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