what is cross linking?

[neil44]

could anyone give me some more information on the riboflavin UVA procedure?
i have my next appointment at the eye hospital in september, last time my doctor was waiting for more info on its results.
i just wanted to understand a bit more of what this procedure involves. i work as a fine artists and my KC constantly worries me!

thank you for your time

[electricheadx]

Hi Neil

Do you want to know what steps are involoved during the procedure?
I just wasn't sure i was taking you up right on your question.

Regards
Denis.

[neil44]

hi dennis,

yes please, i tend to find at the hospital they throw so much info at you and words i dont understand! would just like to prepare myself a little as to what that procedure is and what effects good or bad it will have to my sight?

all the best

[electricheadx]

Ok i can help you there as i have had both eyes done. Right one just 2 weeks ago so it should all be pretty fresh in my head.

The procedure itself will last for about an hour to an hour an half.
I have had topography scans done before the start of each.
You will be taken through what meds and drops you will need to use after the surgery
If your feeling a bit nervous they will probably give you something to relax you a bit.

It starts with disinfection of the area surrounding the eue
Anesthetic drop being will be placed in you eye.
Your other eye will be taped closed
The surgeon will get you to lay on a bed, loom at the green dot straight in front of you and clamp the eye open. You shoudn't feel anything at this stage. It should all be pretty numb, just a little weird.
A small well will be placed over the center of the eye and filled with an alchocol solution to soften the outer layer of the eye.
Once it softens up the surgeon will make a circular inision and peel back a flap of the epithelium.
For the next 30 minutes Riboflavin drops are aplkied to the eye(Everything goes orange). You will feel the anesthetic startin to wear off a few times during the procesure. Just say so an more will be applied.
After the 30 minutes, you are sat up and the surgeon will examine your cornea through a blue slit lamp to ensure the riboflavin has penetrated the cornea.
If all is well they put you back on the bed and the UV lampis placed over your eye. It looks like 5 small lights with one in the center to stare at. The posiion may be adjust a few times during the exposure to ensure the UV light is going exactly where it needs to.
Once the 30 mins are up the eye is rinsed and cleaned. It the epithelium flap can be reseated correctly it will be, if not its removed.
A contact lens bandage lens will be applied, all claps and taping will be removed.

I was then brough to a nice dark room with relaxing music, given a cup of coco. First dose of antibiotic drops are given.
One final inspection of the eye and off home i went.
My entire stay at the clinic was about 3 hours or so.

My eye remained pain free for about 2 hours after the surgery until the anesthetic wore off.
You are give more of this to use, and you more than likely will use it. 1-2 drops every 45 minutes keeps the pain pretty ok. You also will have started your regime of antiobiotics and lubtricating eye drops too. Just get into a dark room and try to sleep. I got sleeping tablets for that evening, so got to sleep easily enough.
I had very little discomfort the next morning. Feels swelled and a bit hard to open. You will have almost no vision in the eye for about a week. It comes back slowly there after.

Thats all i can remember
Any questions let me know

Regards
Denis.

[electricheadx]

Good effects of CXL so far.
Progeassion in my left eye has halted and even regressed slightly.
Much more comfort with my lenses
I even notice slightly crisper vision when i have to wear my glasses
Eye seems less itchy that before

Cons of CXL
No one know whats going to happen 20 years from now after CXL
I was without good vision in the eye for 6 weeks as the cornea need time to settle down before a prescription change.
Your eye will be sensitive to bright light/TV/PC screens and the like for about 2-3weeks(This is how it was for me, may well differ with other people)
Needed time off work while all this was going on

[Lizb]

an alternative way for CXL to be done is how mine was done (private clinic south east england), which was;

Anesthetic drop placed in eye
epithelium was distrupted (lots of little holes to break the surface of the epitheliam)
riboflavin drops put into my eye every 5 minutes or so, this went on for around 40minutes
put under UV light for 30-40 minutes (from memory, had procedure Oct 2009) with more riboflavin drops put in every 5 minutes
bandage contact lens inserted
cotton pad covered eye
strong painkillers prescribed
wraparound sunglasses issued and sent on my way
24hours later went back for check up, bandage lens removed and sent home
follow up appointment were 1 month, 3 months, 6 months and 12 months post op.

downsides to procedure
* immediately after procedure very light sensitive - this reduced after bandage lens was removed
* high pain levels even with pain killers - immediate relief after bandage lens was removed
* increased dryness for first week
* believe that contact lenses cant be worn immedaitely before or for a period of time after - this didnt affect me as i cant wear CL

long term gains
* i can now get one more line than previously on a chart - still not useable vision due to being reliant on glasses for good eye and not able to wear CL
* slight regression in KC, certainly no further progression


Longterm it is still a relatively new procedure, so no-one really knows what, if any, long term problems there may be. There is some information on this website somewhere about the procedure.

[neil44]

hi everyone,
thank you all for your help and explainations, its been very appreciated.
i find it a bit worrying regarding the healing times, last time out the doctor recommended against contact lenses as his opinion were they'd aggricate my eyes.
as i said before i work as a painter www.neildouglas.com, its all very detailed stuff and as i work from photographs in a studio im hoping that i'll be able to continue to paint this way, im in my 30's now and this has been pretty much all ive ever wanted to do. i seem to be getting by with my big 'woody allen' specs, im really glad i know a bit more now on the cross linking so that i can sit down with the doctor and have more of an idea how its going to effect me


thank you all again
neil

[Lizb]

if you have a stronger eye then get your weaker eye done first. That way your stronger eye will compensate whilst your eye recovers.

[Anne Klepacz]

Hi Neil,
The DVD of our 2007 conference includes a talk about crosslinking - if you'd like a copy do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you one. Do bear in mind that the purpose of the procedure is to stop any further progression of KC. Some people do get an improvement in vision as well, but that is by no means guaranteed. I'm a bit surprised that the doctor seems to have dismissed the idea of contact lenses. There are so many different types of contact lens for KC these days that most people can find ones that improves their vision and give reasonable comfort (although it's true that a few people cannot tolerate any sort of lens). A recent newsletter included an article about all the different specialist lenses that are now used - again I can send you a copy.
Good luck whatever you decide.
Anne

[GarethB]

The fitting of lenses post CXL is a big issue because of the changes the cornea goes through for some time post op. This is because there have been a number of reports of corneal scarring being caused by RGP lenses being fitted too soon post op.

I do know a number of people that have been fitted with a soft lens specifically designed for irreular corneas a few weeks after CXL, the material used to make the lens is very similar to that used to make the bandage contact lens sometimes used post CXL and corneat transplant. So when the vision changes post op, the lens is soft enough it can flex with the cornea as it heals and the CXL takes effect and good vision can be maintained.

Perhaps this type of lens might be worth discussing with your consultant to se if it will help you maintain sufficient vision throughout the healing processs to continue with painting?