Desperately Seeking Opinions URGENT

[gilly49]

Hi, my son is booked for private CXL this Saturday 10th. We are all in a quandry as to whether to wait a few months and have a second KC reading as he was only diagnosed this December just gone. We just don't know what to do for the best, but I think maybe we have panicked are are rushing into things instead of going down the NHS route for a second opinion. Did not think that he could have CXL once his thickness dropped below 400, but now I am hearing to the contrary. Help please.
If the mum whose son has had CXL done recently can get in touch I would be most grateful as I can't seem to find you again on the forum (your 13 year old daughter has KC also)
Cheers everyone
Gill

[rosemary johnson]

Hallo Gill,
That does certainly sound like fast-moving, getting CXL this soon after first diagnosis. Impressive response time from the clinic.
I can fully understand where you are coming from,, though, to be worried.
IIRR, the speaker at the last group AGM about CXL said 400 thickness would be a minimum, but I've heard of other people talking of doing it thinner (as it were).
One way of looking at it, if it helps: what CXL aims to do is to stabilise the condition where it is at when it's done. SO the later it is done, then the KC will be stabilised/slowed at a more advanced stage. And the sooner it's done, the earlier stage of progression you get stabilised at.
If you see what I mean.
SO if the condition is progressing fast, it may be a good thing to act, and if it is only going slowly, or only in early stages, a bit of delay may be less vital. We don't know how advanced your son's in, nor how fast-moving.
The disadvantage, of course, is that it is possible that some people may go through all that procedure, disruption etc, when, had they left alone, their KC would have stabilised itself and never got much worse - but ofcourse, once one does CXL, one will never know what would have happened if you hadn't.
Strength to your elbow in sorting it through and coming to a decision. Sorry not to be more helpful. The only other thing I can think of is, you may be able to postpone, but you can't ever undo it once done.
Good luck.
Rosemary

[Graeme Stevenson]

My thoughts would be to do CXL as soon as you have a DEFINITE diagnosis of KC. Given that there are no known adverse effects it can certainly do no harm IMO. If the procedure manages to stabilise the condition then that would be a result.
It is a tricky one to decide on.When do you do CXL? If you have it done early on there is no way of knowing how the KC would have developed,if at all, without it .On the other hand if you wait until the KC progresses then it will obviously be at a more advanced stage and will also be more difficult to correct with CL's .There is also the risk that the corneal thickness will be too thin to allow the procedure to be carried out.
I do beleive you then rely on the Professional opinion of the Ophthalmologist who if he has any credibility will do the right thing for the patient. I do hope the Ophthalmologist has come highly recomended to you and that you have full trust in him/her also.

[Libby]

Hi Gill,
I know exactly where your coming from. I suffer from KC and was diagnosed over 25 years ago. However in Nov 07 my then 17 year old daughter was diagnosed with KC in her right eye.
I was very keen for my daughter to have CXL done on her eye asap, however after her first consultation with the NHS consultant he advised us to wait and see if and at what rate her KC was going to develop.
We therefore waited 8 months and returned to the local NHS hospital. By the time we had our 2nd appt the original consultant had moved on, however the second doctor seemed very keen for us to wait and see still, he explained that CXL is still a very new procedure and any side effects may not have had time to come to light yet. He explained that my daughters sight was very much the same has it had been at her previous appointment 8 months before. His exact words were "do not be a guinea pig wait and see how the treatment developes". This put me in a quandry like yourself. Im nervous that waiting to see will result in my daughter getting past the stage that CXL can be carried out and yet also realise that this is a trained medical professional and that I should heed his advice.
At the moment we have decided to wait and see how things are at the next appt in 6 months time.
Whatever your decision I hope everything turns out well for yr son.
Kind regards
Libby

[Andrew MacLean]

Most people with Keratoconus will never need any sort of surgical intervention.

CXL is not a risk free procedure and I'd certainly wait until there was a definite diagnosis of KC and an indication of how quickly the particular case was progressing before I exposed my 17 year old child to any sort of risk. Even if he does have KC, it may be that his case would be stable without any intervention.

I know that this puts you in a terrible dilemma. In your place I'd go to an NHS ophthalmologist for a consultation, get a confirmed diagnosis and ask for the advice of an independent professional who has had the benefit of examining your son's eyes.

All the best

Andrew