Advice please.......

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pedro
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Keratoconus: Yes, I have KC
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Advice please.......

Postby pedro » Mon 09 Dec 2013 12:11 pm

Hi,
I've had keratoconus for 5 years in both eyes and after years of trying different types of lenses, i've been advised to go for intacs and if they don't work, then to have a full graft for my left eye (Bad Eye). It's very frustrating as contacts give me good vision. however they are so painful and uncomfortable to wear!!!!

The advice needed though is my Doctor has said i should go for cxl for my right eye. I have decent vision with glasses in the right eye so i'm concerned if cxl somehow goes wrong, it may deteriorate my vision in my good eye, which if was as bad as my left eye, i would be almost blind!!!!!

So, the question is, should i go for cxl on my good eye or keep decent vision at the moment?

Any advice would be appreciated

Thank you

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space_cadet
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Keratoconus: Yes, I have KC
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Re: Advice please.......

Postby space_cadet » Mon 09 Dec 2013 4:09 pm

cross linking can for many provide many years of stabilisation n thus rapidly slow down the acceleration of degeneration, yet for some it doesn't offer this and they are no better off for having it done,

due to cross linking still being a relativly new treatment option their is very little known about the long term of people who have it done.

post crosslinking many experience temporary instability whilst the eye adapts n settles down again.

Ultimatly only you can make the deciosn to have or not have, Id be tempted if it was me to write a pro's and con's list, talk to specialist n talk to people who have had the procedure (I haven't)

good luck x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Andrew MacLean
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Keratoconus: Yes, I have KC
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Re: Advice please.......

Postby Andrew MacLean » Mon 09 Dec 2013 4:09 pm

Pedro

You seem to have arrived at a crossroads. I wonder whether they have really exhausted all the contact lens options? I know of people who get good results from soft lenses made specially for people with keratoconus.

If you are really at the end of the road with lenses, then the surgical options that gal short of transplant will probably be a good thing to explore before going through a graft.

Every good wish

Andrew
Andrew MacLean

pedro
Newbie
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Posts: 5
Joined: Sat 29 Aug 2009 1:30 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: Advice please.......

Postby pedro » Mon 09 Dec 2013 5:44 pm

Thanks for your opinion guys,

Andrew, believe me, if i could continue with the contacts, i certainly would but my eyes really struggle with them. Add in Blepharitis and sores around my eyelids and unfortunately i find them impossible to wear.

Again, thanks for your thoughts thus far.

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Andrew MacLean
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Advice please.......

Postby Andrew MacLean » Mon 09 Dec 2013 8:35 pm

I came to the end of the road with lenses too. At least there are other surgical options available now.

All the best
Andrew MacLean

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Lia Williams
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Re: Advice please.......

Postby Lia Williams » Mon 09 Dec 2013 9:29 pm

Pedro,

As you can see well with your contact lenses it may be worth asking if you can piggy back them with soft disposable lenses underneath. This should make the lenses more comfortable for you.

Lia

Amarpreet
Contributor
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Posts: 21
Joined: Mon 01 Mar 2010 3:55 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Advice please.......

Postby Amarpreet » Tue 10 Dec 2013 10:54 pm

Hi pedro,

I was in your shoes around 2 years ago. My left eye was too thin for Crosslinking, but my right eye had decent vision and was treatable. Looking back, I'm glad I went through with it when I did. Like with any surgery, it is a bit of a gamble but it's worth it considering the benefits - it may stop the progression of KC in your eye. With me it did, and I'm now enjoying great vision with the help of a scleral lens in my right eye. As far as I know, the success rate for Crosslinking is quite high.

Putting off Crosslinking might enable you to have decent vision now, but remember Keratoconus is a progressive disease - the cornea's shape will keep changing over time.

Best of luck

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CrippsCorner
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Re: Advice please.......

Postby CrippsCorner » Wed 11 Dec 2013 3:56 pm

Where you say your contacts are uncomfortable, are you using RGP's? Like someone else mentioned, there are keratoconus specific lenses that are meant to be a lot more comfortable that you could try using.

As for the right eye... if it was me I'd jump at CXL. You say it's good now, well CXL should keep it that way. Why wait until it gets worse to do something about it?

I've read that with both intacts and CXL you may still have to wear contacts anyway. I wonder if 'normal' contacts can be used in this case though?


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