Preparing for CrossLinking
Retrospective advice from people who have done it
Choices
As with most life events, you do have a certain amount of control and have to make certain (sometimes difficult) choices. Everyone is different and I can't make these choices for you BUT I can splash my opinions, advice and reasonings across this web page for you!
To have or not to have?
If CrossLinking has been recommended to you by your consultant but you're not yet sure whether or not to do it, my advice is to get it done. I don't say this lightly, but do so for the following reasons:
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You'll regret it if it turns out you need the operation later
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The sooner you can halt a degenerative condition like keratoconus the better your eyesight will be ever after
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Eyes recover faster the earlier you get CrossLinking done
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The risks of the operation are lower the sooner it's performed
I was told I needed CrossLinking at 18 but didn't want it - 4 years later I had no choice BUT If I could have preserved the quality of eyesight that I'd had at 18 I'd be enjoying better eyesight now for the next ~60 years of my life.
Epi on or epi off?
Since I've had both procedures done to the same eye I can roughly compare the experiences for you:
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Lower risks associated with the epi-on surgery
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Epi-off is reputedly more painful. BUT I found that this was only true for the first 24 hours.
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The epi-on surgery didn't work. I'm still awaiting results for the epi-off
All in all, if your surgeon is undecided or doesn't make a clear recommendation to you, I'd recommend getting the epi-off procedure the first time. It is much better to get it done once and properly than to have to undergo the whole thing twice over.
NHS vs Private Care
So if you're a UK resident this is a decision that might need to be made. My first two operations were done privately, and my final one was done on the NHS. All three took place in the same hospital (Frimley Park) and by the same surgeon. So in terms of medical care the service was identical (and always very good).
The key differences were:
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Cost
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NHS patients wait in a group waiting room, private patients wait in their own room. (I did not mind the group waiting room, it actually had a very friendly atmosphere since we were all in the same boat so to speak)
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NHS patients walk into the operating theatre, private ones used a wheelchair
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Food can be ordered to your room in the private ward
All in all I preferred my experiences on the NHS but I am sure all hospitals are different and it is worth asking about what the key distinctions will be between the two services at yours.