UK Keratoconus Self-Help and Support Association

Hi,

I am new to this group. I have been told I need to do the cxl procedure at St Thomas hospital. However, St Thomas hospital has no funding for this procedure yet. So for the past 7 years, they have been doing a trial comparing CXL with another procedure which is said to be as effective as cxl and even less painful. For the trial they do CXL on one eye and the other procedure on the other. The trial has almost come to an end so they would compare to see which is better for patients and then get funding. So far they have done the procedure on only 30 patients!

I was told the keratoconus have worsened and is adviced to the the procedure soon. I am just a bit worried about this trial thing as I feel like a guinea pig. Is it advisable to go ahead with this procedure. Or should I get my GP to refer me to morfeilds eye hospital as they have done the CXL on over 1000 patients. The only problem with morfeilds tho is that their waiting list is very long and I run the risk of the keratotomy so growing further.

Can someone please advice me?

Thank you

Hello and welcome to the forum,
We notified people of this clinical trial on the forum last year viewtopic.php?f=1&t=15716&p=71817&hilit=clinical+trial#p71817
and also in one of our recent newsletters. Clinical trials usually involve small numbers of patients. But the corneal surgeon involved has been doing the standard epi-off CXL for private patients for many years and has published results of previous research on CXL. When NICE, the body that looks at what treatments should be available on the NHS, looked at CXL he was the surgeon they turned to for an expert opinion. So I don't think you need to worry about the expertise at St Thomas's. But of course, if you were accepted for the trial, one of your eyes would be treated with the epi-off method of doing CXL which may or may not be as effective as the epi-on method (that's what the trial will be hoping to demonstrate!)
So it really is up to you whether you prefer to join the trial or to ask for a referral to Moorfields which does epi-off CXL. Have you had corneal topographies done and do you know what the thickness of your corneas is at the moment and how much they have changed over the last 6-12 months?

Hi,

Thanks for replying me.

I got some pictures taken of my eye but I am not sure how how thick my corneas is. I was told by the doctors that the condition has grown quite quickly in 6 months. I have accepted to get the procedure done, but I am just skeptical that I am being rushed into the procedure because they are now coming to the end of their trial and therefore need more results. I can asked to be refereed to morfields, but I have heard that the waiting list at morfeilds is very long and the Dr warned that the longer I wait, the more it may grow and so makes it impossible to get the procedure done. So its puts me in such a difficult situation at the moment. I am getting my pre-procedure check up next week.

I was wondering if anyone has done this procedure at ST Thomas before?

I am just really scared of it growing as well as doing a procedure that has only been done on 30 patients in 7 years and hasn't been approved by the NHS.


Thanks!