CXL for son - right thing to do?

[dawny]

My 15 year old son has KC. He is managing with glasses (only because he had an uncomfortable experience with contacts at the opticians!). His eye consultant is really anti CXL. The consultant however had very little information on CXL and almost seem not to have heard of it but said "best to leave things alone and see what happens as often medical intervention causes other issues"

However I feel that if it can help to prevent the progression it is a sensible procedure to consider.

We have been to Accuvision in London where the staff were very encouraging and have advised CXL is the way forward.

My problem is the lack of support from our NHS Consultant. If it were my eyes I would go for it but being my son the decision seem harder!

Any words of wisdom from people who have had CXL or those who decided against it.

[Anne Klepacz]

Hello Dawny and welcome to the forum,
I hope you'll get some replies from those who have made the decision one way or the other.
One aspect to consider is whether your son's KC is actually progressing or whether it's relatively stable giving you more time to think things through.
In the meantime, the DVD of our 2009 conference covered all the current options for KC, including CXL and something about the wide variety of contact lenses now available for the condition. If you'd like a copy, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll put one in the post to you.
Anne

[caroline6505]

Hi

I had crosslinking in my right eye a few weeks ago. In a couple of weeks I'm due to have the same in my left eye. I was swayed to go for it because the aim of the procedure is to half progression of the condition in eyes that are progressing as opposed to stable. It's a procedure that's been carried out for years in Germany, America and more recently the UK (approved by NICE in 2009 or thereabouts I believe) – in view of that there's not masses of data, however, 9/10 years worth to date suggests it's all positive. I went private (Centre for Sight) as I didn't want to wait on a lengthy NHS waiting list for a referral and I knew it's not widely available on the NHS. As for the procedure itself, whilst I'd rather go shopping or out for a meal, it wasn't too bad. I was given anaesthetic drops, the surgeon used a disruptor to puncture the epithilum (probably the worse part – although I didn't feel it, I automatically wanted to back off because I could see it coming towards me!), more eye drops (collagen with riboflavin), was given a sedative and then lay staring at a laser for half an hour (it actually flew by!). Some individuals have experienced post op pain which made me very jittery, however, I didn't need pain relief afterwards and was up and about the next day without any problems. There's a few others on the forum that have had it done recently (we've compared notes!). Whilst I couldn't comment on an individual case (I'm no expert), however, if your son has been advised to go for crosslinking, I can say with honesty that it wasn't too bad at all. Best wishes with whatever route you go down.

[Andrew MacLean]

As far as I know, the FDA has not yet approved CXL, and NICE is still considering its position. The treatment must, therefore, be considered as 'experimental'. This does not mean that it is hazardous, neither does it mean that it is ineffective, it simply means that it is still under consideration.

As a parent I'd want to know how it compared to doing nothing at all to eyes that were not progressing, and this data will only be known after a lifetime.

My son has keratoconus and I would not recommend him to have CXL; neither would I, as things stand just now, have it myself.

Andrew

[dawny]

Thank you all for your replies.

His KC is progressing and he has had 13 different eye prescriptions in 2 years so we do not have a lot of thinking time unfortunately.

NHS have said "we can always do a transplant" I am grateful they can offer this if needed but would not want to put my son through this if things can be halted at the stage they are now.

Wish I had time to go and study to be an eye specialist before we make the decision!

[Andrew MacLean]

The whole purpose of the forum is, not to tell you what you must decide in your situation, but to support you as you make your decision.

I know that I am more cautious about CXL and its benefits than others here, but I do know that many choose to go that route. If that is your decision then we will be here for you and your son. If you decide on a different trajectory, we will be here for you and for your son.

In the end the decision rests with him and with you. The experience and the opinions of others will weigh in the balance as you make your choice. Some opinions will weigh more heavily; those of trusted ophthalmologists and optometrists. In the end, the opinions of other can take you only so far; your son will have to live with the consequences of whatever decision is made and even a decision to do nothing will have consequences for him.

Know that nobody here takes lightly the situation in which you find yourself.

Yours aye

Andrew

[Lizb]

You dont say what area you are in, but i found that the NHS clinic i was under initially had little or no clue about either CXL or Intacs for KC - so just wanted to manage/monitor my KC. I suspect this is partly due to the low numbers that pass through the clinic so the staff dont have time to read up on the less common conditions and upcoming treatments.
However by moving to a larger specialist eye clinic (in my case St Peters Eye Unit at Royal Liverpool Hospital for my intacs) I got a more balanced view from the team there and was more able to make the decision fully informed. I had done a lot of research previously on the procedures before making any decisions. I actually had CXL done in 2008 (i think it was) by Centre for Sight on a private basis as NICE hadnt yet decided whether to continue with the trials for CXL. As i understand it the trials are still ongoing for CXL.

What are your son's thoughts on his KC? What happened with the CL fitting and what sort of lens was he fitted with? There are a lot of lenses out there now that are designed for KC eyes, Kerasoft IC and 3, synergyes to name a couple of makes. These are softer in material than RGP so he wouldnt feel the lenses the same. Just something else to consider for you.

[dawny]

Again thank you for taking the time to answer. Andrew your words of support are reassuring and I already appreciate the information I have got from this site.

LizB I think you are right that our NHS clinic has little experience of KC. I will ask if we can be referred to a larger specialist centre.

We will look more into CL. The problem at the fitting was they would not stay on his eye and were extremely painful - enough to make him pass out poor chap - so he is reluctant to try again. Although CXL will not be painfree! Reading another thread I think we need to find a more experienced fitter used to KC. Although the one we see is recommended by our consultant.

My son is very stoic and just gets on with things - his poor sight frustrates him and he was impressed with Accuvisions approach and explanation of CXL. His main passion is motor sport and he would do almost anything to make sure that he can continue to partake in this.

Thanks again you have given me other options to to mull over

[Lizb]

Was the CL fitter in a hospital clinic or on the high street?
Some of the larger clinics, like st peters, have their own opticians and CL fitters. Other clinic outsource it to a high street opticians.
Benefits and downsides to both, but one to consider is the range of fitting sets that each has to offer. My fitter has the sets to try several different types, makes and sizes. I am actually under st peters for my KC, but get cl costs claimed back through the pct from my local opticians who have experience with KC. I didnt fancy travelling to/from liverpool for cl fitting and knew this to be an option.

[harker]

Don't forget dawny that even after CXL, your son will most likely need to wear contacts for best possible vision. So whatever you choose, looking into them is important.