To cross-link or not to cross-link, that is the question

[Lio]

Hi,

I am not from from UK (I am from France), but I thought I could still post here to get answers to my questions because
this forum seems very dynamic and friendly I hope it is not a problem. There is no real good French forum on keratoconus
(the forum of the French keratoconus association http://www.keratocone.net/forum/index.php does not seem to be still used, it is
impossible to register). I hope my English won't be too bad.

I am a 22 yo man, and I had the first corneal topography of my life done today. Of cours, I have keratoconus (only declared on my left eye
I am very lucky (for now... ) because I can still get almost 20/20 with spectacles.

I told my eye doctor about cross-linking but she said it was too early and asked me to come back in six month. However I still have a few
concerns :

• As far as I know, cross-linking requires my cornea to be at least 400µm thick at its thinnest point. It is currently 463µm at its thinnest point.
  I am afraid that my cornea will thin too quickly and I that I won't be able to have cross-linking done.
• My spectacles prescription went from (left eye)
  March :
  

  Code: Select all

   +0.5(-0.25)140°
  
  to, June :
  

  Code: Select all

   +1.00(-2.00)130°
  
  which makes me think my keratoconus is evolutive.
• There is a very high probability that my keratoconus will evolve in the next years, so why not do the cross-linking
  as early as possible ?

If you have answers to these questions, I would be really pleased to hear (read) them
And again, I apologize for my poor English

[Anne Klepacz]

Hello Lio and welcome to the forum!
Specialists have different views on when to crosslink. In the UK, to have crosslinking on the NHS it's necessary to demonstrate that the KC has progressed over 6 months. So that ties in with the advice you were given. The rationale is, why do a procedure that isn't risk free if the individual has good vision which may stay at that level. Others think it's sensible to crosslink as early as possible and before the individual becomes dependent on contact lenses.
It sounds as though your corneal thickness is still well above the limits for crosslinking and you're getting good vision with glasses. So waiting 6 months to see how it develops shouldn't be a problem. But private clinics in the UK don't have the 6 months restriction. So there aren't any clear cut answers to your question! In the end, it's your choice and your decision.
All the best
Anne
PS Your English is excellent!

[Lio]

Thank you very much for your answer

So there aren't any clear cut answers to your question

I think that's the point ! There is no emergency to do this treatment right now for me but it could
still be useful as it is conservative and seems low risk...

I managed to get an appointment with a cornea specialist next month, I will have another opinion on whether I should have
this treatment done or not.

I added my topographies, if anyone is interested (left eye/right eye):

[caroline6505]

Hi

Not two patients are the same. I think the success of the procedure depends upon a number of factors e.g. meeting the suitability criteria and the expertise of the surgeon carrying out the procedure.

i've had CXL is both eyes. My left eye has been stable for over a year, but unfortunately my right eye is unstable (I also had a graft). My vision started to deteriorate once again and my surgeon has advised that the cornea is starting to thin and bulge. He hasn't been able to shed any light on why this has happened after crosslinking. In my case, I wish I hadn't had it done. I think it's important to also consider that in my case, I think it's taken months to get over CXL, not days or weeks as I was advised.

Important thing is that everyone is different and I'm sure people will have lots of difference experiences.

Best wishes

Caroline.

[andytraill]

Hi Lio,

This is the standard thing to do get topographies then check for progression in 6 months. Give avoid eye rubbing especially hard and onto your cornea. They will know enough to make a decision at the 6 month check. You're very lucky to have had it caught at this stage.

Good luck,
Andrew

[Mousework]

private doctors scare me, because if you got the money you can get anything whether you need it or not

[Lio]

Hi all and thanks for your replies,

This is the standard thing to do get topographies then check for progression in 6 months

The problem is that my eye doctor did not ask me to come back to do a corneal topography but
just for a routine check-up. She was going to ask me to come back in one year (!) but when she saw how worried
I was about my condition, she asked me to come back in six month. I think that one year is to much to monitor the evolution
of keratoconus.
Anyway, I will see a cornea specialist next month so I will be 100% (or at least 75% ) sure about what to do.

You're very lucky to have had it caught at this stage.

Yes but I need to be very careful about what I do now (or in the next months) so as not to let it evolve too much.

private doctors scare me, because if you got the money you can get anything whether you need it or not

I think this really depends on the clinic/surgeon. There are very serious surgeons in private clinics that won't advise you
to do a treatment you don't need.

[Lio]

Give avoid eye rubbing especially hard and onto your cornea

Yes, I read on the Internet that eye rubbing is a likely cause of evolution of keratoconus so I
completely gave up this.
However, I often need to clean very small debris (especially in the morning) on my eyelids. Before I knew I have keratoconus, I would do that
by rubbing my eyes.
Now I "rub" my eyelibs without touching my cornea (or rub the corner of my eye near my nose if its is unclean).
Do you think I should also give up doing that ? Or is it OK as long as I don't push on my cornea ?

[Mousework]

Hi all and thanks for your replies,

I think this really depends on the clinic/surgeon. There are very serious surgeons in private clinics that won't advise you
to do a treatment you don't need.

at the end of the day, it comes down to money and funding research. One thing , you will have to do the complete tests again. I have seen plenty of private eye doctors across the UK and the Netherlands. it been the same story. w