CXL -- Potential Risks and Benefits

[Mousework]

If we are going to be putting warnings on such posts then to be balanced it must also be said that the wearing of contact lenses can lead to corneal abrasions, scarring and infection!

It is a fact that MOST people with KC wear contact lenses and for many they cause problems and if they had the choice they would wear glasses.

If I could have CXL, at the current prices being quoted privatly, when I was wearing RGP lenses, three years of solutions costs and lenses for would equate to the same as both eyes being crosslinked.

My daughter is 13 and has regular eye scans to see if she starts tod evelo KC. We have discussed with her what KC means to live with and as a family we have decided that the first signs of KC, if she is still in agreement she will undergo the CXL procedure. She then won't have the worry that many have that will the KC get worse, how will it affect me long term and if caught early she would avoid the expense of contact lenses and the costs of maintaining them.

Therefore in my opinion it is msleading to say CXL is an unnecesary expense for people whose condition is managed with lenses as CXL to date is yet to be shown to cause damage to the cornea long term since gaining polarity since 2008. In fact CXL has the potential to save these people money with little risk to health!

Also quite a few cases of Keratoconus never process beyond glasses and these cases CXL not needed. While there are cases where its aggressive for a couples years than its stops by its self. CXL is a double edge sword because the research from FDA and the Eurpean study show CXL is not a cure and only stops the procession for a number of years and is required again. actually there are two sides to the coin when considering CXL, the hype and the truth.

[Andrew MacLean]

actually there are two sides to the coin when considering CXL, the hype and the truth.

I could not agree more.

[Lynn White]

Hi All,

As someone who has followed many patients who have had CXL over a period of nearly ten years, I think I may say I have actual hands on experience of this procedure. Here are my thoughts.

1) CXL is the ONLY treatment that has been shown to halt the progression of keratoconus

2) It was first thought that improvements in vision occurred up to about 2-3 years. Professionals (including myself) are now finding improvements continuing up to 7 or 8 years.

3) The improvement in vision does not appear to be related to the front corneal shape but may be related to positive changes on the posterior surface

4) Many of my patients who had CXL find they can return to normal spectacles and contact lenses after 2-3 years - this does depend on how bad the original KC was but generally, vision in spectacles is very much better.

5) Many find significant reduction in ghosting as time goes by. I am sometime amused by the bewildered look on a patients face when I ask them how they are coping with ghosting and then it suddenly dawns on them they don't have this problem any more.

6) I do not agree that it is automatic that patients have to have the procedure repeated. The only ones I have seen repeated are "epi on" cases or ones where the epithelium was only partially removed.

7) CXL can be combined with other procedures such as INTACs and IOLs to improve overall vision

8 ) Many of my patients who had CXL consequently avoided having to have a graft. I know many people do have successful grafts but many also do suffer rejection or other complications, so even if this procedure delays grafting for several years, that is a bonus.

9) Side effects: Long term studies show that 0.3% patients lost 2 or more lines of best corrected vision. These figures include very advanced keratoconus. If patients are treated early, then this figure reduces to almost zero.

10) Older "stable" patients: The current guidelines suggest that the procedure is not suitable for patients who are not progressing or who are older ( These patients are assumed to be naturally cross linked due to their age). I am really not too sure that this is a correct assumption. My experience of older patients is that some, although not progressing, are far from stable. Vision can alter from morning to afternoon and from week to week. All my older patients with this issue who went on to have CXL found their vision stabilised ( One patient asked..."Tell me, is it NORMAL to see the same at the end of a day as you see when you wake up?")

11) Young onset: This is the tricky one. Generally, the younger the onset, the more aggressive the keratoconus. Now, at the moment, we tend to detect it mainly in the teens but there is increasing anecdotal evidence that it can start as young as 6 or 7 or younger. At any rate, what do you, as a parent, when faced with a diagnosis?

Current guidelines talk about waiting to prove progression. However, KC can move VERY fast, so do you wait until the cornea is really distorted or nip it in the bud while the cornea is relatively normal?

In Sweden, they have decided as soon as anyone is diagnosed, they are cross linked "no ifs or buts".

In many other countries, where KC is very aggressive and contact lenses are a difficult option (hot, dry dusty conditions), CXL is the first, not last, option.

I can understand the caution expressed by some members here but I would also have to say that just because this procedure is only widely available privately in the UK at the moment, this does not mean that it is a bad procedure or that surgeons are somehow trying to profiteer from it. It is available in a limited number of NHS hospitals and increasingly, PCTs are being approached on a case by case basis to provide funding for it.

For what its worth, I feel that because CXL does appear to improve overall acuity, even if it does not return the cornea to its original shape, it does have a therapeutic aspect beyond that of merely halting the condition.

I used to sit on the the fence about this procedure. I don't any more because I have witnessed for myself the vast improvements in quality of life it brings. Not everyone has a successful contact lens fit or graft and for those that do not, life can be less than stellar with KC.

The best thing for me, is hearing my patients say "You know, I keep forgetting I am keratoconic!"

Finally, I don't have any financial interest in CXL. In fact, as my practice deals exclusively with fitting specialist contact lenses for Keratoconus and irregular cornea, you could say CXL will eventually put me out of business. And you know what? That would be the happiest day of my life.

Lynn

[harker]

CXL isn't a magic bullet, by any means, and I don't think anyone here is presenting it as such. But on balance I think it's the sensible option for a newly diagnosed person wanting to maximise their chances of avoiding a life in lenses - which bring with them costs, limited wear time, and varying levels of comfort.

[harker]

Also, Carol, just to clear up what's been said about "aggressive keratoconus" - there's no official diagnosis as such. The rate at which the disease progresses can vary from person to person, year to year and month to month. Basically, they can measure the rate of your son's progression over, say, six months and tell you at that point whether or not it's progressing quickly or not. If your son has a very severe rate of progression it'll be self-evident - he'll notice his vision getting worse without the tests. Even if it seems to be progressing slowly, that isn't a guarantee it won't speed up at some point. Hope that's helpful.

[longhoc]

Not wanting to come down on one side of the debate or the other, complications from Crosslinking are not unheard of. But neither are they common. But then again, Crosslinking is not like, say, hip replacement with tens of thousands of procedures performed every year -- and over the course of decades. So you wouldn't expect reported complications to be coming in in droves...

But complications have been observed by clinicians. This is probably one of the most reliably documented and detailed reports of such:

http://www.jmedicalcasereports.com/cont ... -5-152.pdf

Of course, to state that the unfortunate Keratoconus patient's complication was caused by the Crosslinking is way, way a leap too far. It would be better put that the complication was correlated to their undergoing the Crosslinking because the causal relationship between what the patient experienced and how the Crosslinking is performed could not be established as the report notes.

However, the report then (for my own liking) takes a step that isn't warranted in the conclusion when it states that:

"Despite the aforementioned data from other clinical and research settings, the CXL procedure caused non-specific irreversible damage to keratocytes in our patient that..."

(emphasis mine)

... to which I retort "but you didn't prove that and you said it yourselves earlier in your report" (which speculated that a reaction to NSAIDs administered post-operatively -- amongst other possible factors they also mentioned -- could be a reason for the side effects and while they didn't prescribe NSAIDs, they did use some other well-known medications which are replete with extensively documented intolerances yet they seemed to discount any reaction to/from these without an explanation ...)

That criticism not withstanding, the report also highlighted other similar adverse reactions to Crosslinking in different published literature. Again, though, they didn't exactly find it was common.

Trying to be as neutral as I can here, would probably be better for readers to study the report themselves and form their own opinions.* And get specialist advice from a professional you trust.

Best wishes

Chris

* which I'll move to a new topic if necessary as poor Carol must be wondering "what have I started here ???"

[Mousework]

Also, Carol, just to clear up what's been said about "aggressive keratoconus" - there's no official diagnosis as such. The rate at which the disease progresses can vary from person to person, year to year and month to month. Basically, they can measure the rate of your son's progression over, say, six months and tell you at that point whether or not it's progressing quickly or not. If your son has a very severe rate of progression it'll be self-evident - he'll notice his vision getting worse without the tests. Even if it seems to be progressing slowly, that isn't a guarantee it won't speed up at some point. Hope that's helpful.

i have now seen three separate eye consultants after viewing the history of the KC each of them has said it was aggressive keratoconus. in short ,eye doctors do use aggressive to describe the procession of the disease

[harker]

You're missing my point. My concern was that you'd given Carol the impression that there's different types of KC - aggressive and non-aggressive. There isn't. There's just KC, which can progress at different rates and is difficult to predict.


Longhoc - I do feel we've scared Carol off with the CXL argument. But it's something that's only going to keep coming up as the treatment becomes more popular.

[longhoc]

Hi all

This is a very valid debate so I've created a new Topic for it (as you say Harker, we don't want to put the frighteners on Carol -- her son's situation is obviously specific to him and his family; a wider discussion of CXL is going to end up confusing an individual's case with a more abstract discussion).

Have split this off from Gareth's last post in the original thread where we probably started going off the original topic.

[Mousework]

You're missing my point. My concern was that you'd given Carol the impression that there's different types of KC - aggressive and non-aggressive. There isn't. There's just KC, which can progress at different rates and is difficult to predict.


Longhoc - I do feel we've scared Carol off with the CXL argument. But it's something that's only going to keep coming up as the treatment becomes more popular.

if the progression is rapid then is classed as aggressive, end of