Day 3 CXL

General forum for the UK Keratoconus and self-help group members.

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krolen
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Contributor
Posts: 25
Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Day 3 CXL

Postby krolen » Sun 03 Jun 2012 5:20 pm

thanks Lynn, think we have to remember that rome was not built in a day! Great advice tho -) We are just so dependent on our sight, the slightest deterioration and it messes with our minds! -)

krolen

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Lynn White
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Posts: 1398
Joined: Sat 12 Mar 2005 8:00 pm
Location: Leighton Buzzard

Re: Day 3 CXL

Postby Lynn White » Mon 04 Jun 2012 9:59 am

Hi Krolen

Don't worry, its totally understandable. There are very few eye conditions that are like keratoconus. There are either acute conditions that go suddenly and very obviously worse, undergo treatment and have a resolution - you an either see well or not at the end of it. Or, there are chronic,long term conditions that get worse in a measurable way and have a more or less predictable end point. Keratoconus is not like either of those.

Keratoconus is "hidden" in that reasonable vision is possible with contact lenses and that means most everyone else in your life (family, friends, employers, teachers even eye professionals) think you are coping well and can get on with life.

What is so hard is the uncertainty. Does this extra ghosting you started seeing this week mean that it is progressing? Does the fact that a lens that fitted well last week and doesn't this week mean you are going to have to change lens types? Will that mean time off work? Will I lose my job?

One small change can set off an entire chain of thought and you simply can't switch that off.

Patients really want instant answers from professionals to give them peace of mind. Unfortunately, keratoconus is an area totally lacking in detailed research. This is because there was, until CXL, no prospect stopping progression, so little point in researching what happens if, say, you take keratoconics out of contact lenses for a while. Its also virtually impossible to do experiments where you monitor eyes over a length of time without lenses. Who would volunteer for that?

What we do know is that CXL works - but over a long period of time. As more people have it done, we will learn more about how to predict vision changes post op and what they actually mean.

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk

Chris_J
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Posts: 22
Joined: Fri 03 Feb 2012 11:31 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Day 3 CXL

Postby Chris_J » Wed 06 Jun 2012 1:13 pm

Hi Lynn/Krolen,

First up - thanks very much for the info Lynn, that was interesting to read and appreciate you taking the time to reply. I do totally understand that you can't say much without seeing someone's eyes, but I (and I suspect I might speak for a few here) don't always get much in the way of information or don't remember at the time of seeing someone to ask so being at least able to get a general background is very useful. For example I had no idea that lenses moulded the shape of the cornea (well to the extend they stopped like that for a good while after stopping wearing lenses). I admit I guess I don't really need to know that, but I do want to understand as much as I can how things like wearing (or not!) contact lenses can affect me. Come to that I had no idea about CXL till I started reading this forum!

How are things going with you Krolen? I hope all's going well. T-minus 22 days till I get CXL done!

Cheers

Chris

Gabby41
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Joined: Wed 06 Jun 2012 9:13 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Day 3 CXL

Postby Gabby41 » Wed 06 Jun 2012 9:40 pm

Please help my son was diagnosed with keratocanus in both eyes the specialist at the hospital was no help at all and said nick my son needs collagen cross linking . Apparently it's not on the Nhs only private no mention of lenses please can someone help me please

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

Re: Day 3 CXL

Postby Andrew MacLean » Thu 07 Jun 2012 6:13 am

Gabby41: welcome to the forum.

Here's the best advice I was ever given about dealing with keratoconus: Don't Panic! :D

How old is your son?

Did I understand you right to have said that your son was told that he needed cross linking at the same consultation as his condition was diagnosed? If that is what happened then he has a perfect right to ask for a consultation with another specialist.

Crosslinking is a relatively new procedure; the old standard 'first response' was to fit contact lenses when the patient's KC got to the point where glasses were no longer capable of providing the necessary correction. Crosslinking aims at achieving two ends. Firstly it can slow the progression of the condition and secondly it can provide a better eye surface for a contact lens to be fitted. If your son had only been diagnosed I don't really understand how it was apparent to the consultant that his condition was progressing and might benefit from cross linking.

There are one or two additional things that you may like to know:

The majority of people with keratoconus will never need any surgical intervention at all.
Most people live happily with a regime of contact lens wear.
Some people with KC never need even contact lenses as their sight can be corrected with glasses alone.

If the time comes when your son needs more radical interventions then there are several stages to this progression:

Little 'crescent shaped' clear plastic strips can be inserted into the cornea to improve its shape.
there is Crosslinking
There are lenses fitted inside the eye
There is the cornea graft (transplanted tissue from a donor)

Every good wish

Andrew
Andrew MacLean

krolen
Contributor
Contributor
Posts: 25
Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Day 3 CXL

Postby krolen » Mon 11 Jun 2012 3:58 pm

Hi all, Sorry I have not been on for a few days things have been a little hectic for me. I went for my first pentacam scan on friday. They said that my cornea was slightly thicker and that i had lost some of the astigmatism. He said the eye was a little dry and has given me some drops. I have copies of the pentacam scan before and 2weeks post opp if anyone is interested -). Hope we are all doing well!

Krolen

Chris_J
Contributor
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Posts: 22
Joined: Fri 03 Feb 2012 11:31 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Day 3 CXL

Postby Chris_J » Mon 25 Jun 2012 11:46 am

Hey Krolen,

Sounds like things are going well for you so that's good news! I just got back from hols so now just waiting for Friday to have my CXL done. Got to be in at 8:30am so at least I can get it out the way first thing and not have to think about it all day!

Cheers

Chris

krolen
Contributor
Contributor
Posts: 25
Joined: Tue 14 Feb 2012 8:15 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Day 3 CXL

Postby krolen » Thu 02 Aug 2012 11:12 pm

Hey chris, Hope it all went well for you mate.. Keep taking the drops mate.. -) all the best. .andy


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