CCL also known as CXL and crosslinking- experience

[cclman]

I had CCL in both eyes on the 5th of Sept (See other thread under CCL)

Here is my diary of experience I would like to know if anyone else bad sensitivity to light???

Friday 5th Sept- CCL both eyes, Friday night bad pain little sleep
6th Sept- Could not open either eyes and pain
7th Sept- Could open both eyes for short periods of time less pain
8th Sept - 11th Sept could open both eyes (inside only) foggy/smoky blurred vision, scared and very worried
12th Sept - Temp contacts removed both eyes, good vision eyes a little sore
13th sept today 14th Sept - bad light sensitivity, sore eyes, no watching TV, No reading, wearing sunglasses inside and outside all sun light (even with sun glasses) very very painful

.........Next return visit to DR Saturday the 20th of Sept!!!!!

Has anyone had CCL or "crosslinking" as its called and how long did you have light sensitivity? whats you opinion of this treatment?
Before this treatment I could, drive, watch TV, read and live a normal life since it my life has been turned upside down. I hope it gets better in time!

This link has some info: http://kcglobal.org/content/view/11/25/

Email me or post your experience: albertshoemann@gmail.com (not real name)

[Andrew MacLean]

cclman

Welcome to the forum; and thank you for posting your post CXL diary. I look forward to following your experience over the weeks and months to come.

It is always good to have some balance on new therapies; it may be that our posts on CXL in the past have erred slightly on the side of an optimistic appraisal of the possibilities that it opens.

Yours aye

Andrew

[cclman]

Thanks Andrew. I want to know if anyone had CCL or as it was known CXL "Crosslinking" and how their eyes coped with light?? Mine are terrible I live in a twlight world like dracular trapped in my flat for the last 9 days. All light hurts even electric light and with sun glasses on inside the flat and outside. I can't even watch TV!! see my other thread and diary of treatment.

I'd like to know how anyone is post op so I can know what to expect!!??? ...........gulp

Great forum and thanks.

[pauline collins]

Hi There so sorry to hear about your predicament. Can you tell me what CCL / CXL Crosslinking is.....sounds painful and annoying all at the same time.
Despite having had KC for the last 6 or 7 years I feel I have been in the closet having been dealt with by a high street optician so not sure about all the terminology and acronyms.......

Thanks
Po

[private104]

I found a definition of CXL in the Frequently Asked Questions - and answers zone. It looks like they thicken the stroma of the cornea by dropping in colagen in the form of riboflavin. They then 'fix' it with UV light. Trouble is they won't do my eyes because my corneas are too thin.

[GarethB]

CXL used to be refered to as C3R; Corneal Cologen Crosslinking with rhiboflavin.

You will probably find more refrences if you try typing the terms in bold above.

Any corneal operation can result in light sensitivity that can last weeks or months.

The key point to remember is that if anything causes you concern call the hospital that performed the treatment and then share your experiences.

Better to get a prompt answer and find there is nothing to worry about than make a post here and wait a few days before someone who has gone through the same as you makes a post and things are more serios and consequently take longer to treat which could have been avoided.

[Andrew MacLean]

"Crosslinking" is a method that is used to combine the molecules of different substances together. The classic example is the vulcanization of rubber (combination of sulphur and rubber) Plastics can also be crosslinked, and so can the collagen in the cornea.

To 'crosslink' the cornea, they either lift or make holes in the epithelium (the surface layers of cells) and drop riboflavin (a collagen also known as vitamin B2) into the stroma (or central layer of the cornea). They then bind the riboflavin into the structure of the cornea by exposing it to UV light.

In the forum, as Gareth says, we have sometimes called this C3R, we usually call it CXL, and we now increasingly call it CCL. Each of these refers to Crosslinking.

All the best

Andrew

[cclman]

I found a definition of CXL in the Frequently Asked Questions - and answers zone. It looks like they thicken the stroma of the cornea by dropping in colagen in the form of riboflavin. They then 'fix' it with UV light. Trouble is they won't do my eyes because my corneas are too thin.

As the guys on this forum say. CCL or known as "CXL" on this forum also known as crosslinking is a quite newish technology to strengthens the cornea(s). I am day 10 into my recovery and suffering badly from light sensitivity. I was told off by the Dr for calling it CXL! but a name is only a name

A Dr from India emailed me to say:

Hi,

Thank you for your email.. It takes 2-4 weeks for eyes to get back to normal.

bye

Dr Rajesh Fogla

I hope he is right??? This was in reply to an email from me to him.

I don't know yet if it was a good idea to do it as its too early to tell. I had in done in the Czech Republic and it cost me 1000 GBP I think you can forget the British NHS at this time, although I could be wrong. I had both eyes done at the same time. The Dr was trained by the inventor so I hope I was in good safe hands!!?? Its hard to feel confident at this stage, all I know is my life has been turned upside down for now. I am sure others are worse off than me and at least I have sight so I am lucky. Ill let you know as the days weeks progress how I get on so it may help others in making the choice to do it. On the otherside I hope others who have had it done will share their experinence with me and others on this helpful forum.

[GarethB]

1000GBP in the Czech Republic sounds pricey, I've heard of it being done for that privatly in the UK and its suposed to include all the follow up consultations too.

[cclman]

Maybe it was costly but thats what I had to pay. It includes all drugs and follow up visits. Anne on this forum thinks its 1200 in the UK so maybe I did not save much money?? 1000 GBP in the CZ is 2 months average wage!!!!! was it worth the pain to wallet and eyes?? I hope so!!! let you know.

oh hum thats life!!