UK Keratoconus Self-Help and Support Association

Hi all

I'm the parent of a 23 year old who was diagnosed as having KC 18 months ago.

We got him referred to the Royal Hallamshire in Sheffield as our NHS in East Lancashire can't deal with KC, it seems.

He has had a successful intac implant in his right eye (he reads the bottom line on the sight chart!), but his left eye appears to be beyond cross linking or Fitment of an intac.

Andrew has been wearing a special hard contact ens in his eft eye for some time (we have a superb optician) but was having a lot of discomfort. He recently got a hybrid lens which initially seemed ok but he now says is also a touch painful.

He is now seriously thinking about asking to go on the list for a corneal transplant.

I don't know if his discomfort is he result of his Keratoconus, his lens or whatever. As a past wearer of hard contact lenses about 35 years ago, I can appreciate his discomfort and don't know whether what he's experiencing is "normal" or something else, eg the cleaning solution.

I really feel that a transplant is the last option as I wonder whether there are other things we coud try with his contact lens.

I wonder if anyone has any thoughts or experience?

As a parent, I would do pretty well anything to support him and even if this site cannot offer anything it is somewhere to discuss things with other people who understand.

Many thanks

John

Hi there John and welcome to our forum.

Thanks for your post -- which is very welcome as it contains pretty much a definitive list of the sorts of issues that people with Keratoconus have to grapple with !

It is a not infrequent comment that the NHS provision for managing Keratoconus is variable. Often people believe that private practices are the only alternative if they think they've been let down by the NHS. While there are some superb -- world class -- providers, it is good to know that the NHS has many, many centres of excellence. As you say, sometimes though you have to switch around to find one that delivers what you need.

As your son's experience shows, even with bilateral Keratoconus, it is often the case that one eye is worse than the other. This necessitates differing treatment strategies. I take it that the intac option has been ruled out for the left eye due to advanced thinning of the cornea ? (and the same applies to Crosslinking). If this is the situation then you've got -- as it sounds like you, your son and the clinicians have realised -- basically two options. One is to continue to try and get a lens of some type or other to work. The other is a graft.

This decision point is the real hard work for those of us with Keratoconus. Many people luckily never get there -- they manage with lenses, intacs, crosslinking or whatever indefinitely. However, if you are at that point, it's not easy to know what to do for the best. I know, as I've in the past 6 months gone through exactly the same process. And it's then you realise that while the clinicians are as helpful and apply their expertise as well as they possibly can, they can't make this sort of decision for you. Whether it's spelt out or not, you're really a bit on your own.

The way I dealt with the choice was to make 100% certain -- beyond any doubt in my mind -- that I'd genuinely exhausted all possibility of obtaining a lens of some description which I would be happy with. This is where, if I have a criticism of the NHS, it's that typically you get RGP (hard) lenses, they try and produce an acceptable fit, but once you start reporting back that the inevitable compromises in trying to get a "perfect" fit aren't suitable for you, it's then you get told you need a graft. You are quite fortunate to attend a clinic where they offered hybrid type lenses. Many don't.

But there is so much choice in lens types -- apart from hybrids there's also soft lenses for Keratoconus, sclerals (large diameter lenses), semi-sclerals and even within the RGPs, there's several different manufactures offering different variations on the RGP theme. So I do sometimes have a hunch that with some of the less specialised regional centres, you can end up with a false choice between RGPs or maybe hybrids, and a graft. This could leave several potentially good deals on the table that you never get the chance to evaluate. Another point you rightly bring up is solutions and the cleaning regime. It can make a significant impact on lens tolerance and wear times because the products are often profoundly different in composition. For example, the polymer cleaners are quite dis-similar in the way they are formulated to the hydrogen peroxide + neutralising disk systems. You might be sensitive to one, but perfectly happy with the other. Then there are also allergens -- Keratoconus and allergies often go hand-in-hand. The proper management of allergies can also increase how we get on with contact lenses. Working through all these variables is definitely something to consider but it is time-intensive. We're all of limited patience, so how much time is reasonable to throw at the problem of getting on with your lenses ?

For me, I went through every type of lens out there apart from sclerals and gave all of them a fair chance. By "fair chance" I meant at least 6 months+ trials. You really cannot make a proper decision on whether a particular lens type is going to be acceptable to you in the long term in less time than that, in my opinion.

Only after doing that could I say that none of the options short of surgery would be viable for me. That made the decision easy -- well, easier, anyway. I knew that whatever the outcome of the graft, it was the best thing for me to do no matter what.

Does that mean that I think this is what you son should do ? Well, yes and no. Yes because by ruling out all lens types he'll be certain that the graft route genuinely is the right thing to do -- or else he'll have discovered a lens type that is fine for him and meets his needs. But -- and I hate to be contrary but I'm trying to be as honest as I can -- possibly not. Remember when I said above that I'd tried everything apart from scleral lenses ? That's because after far more years than I care to recall, I'd reached the limits of my willingness to go through yet another period of -- often uncomfortable and in some respects debilitating -- trialling lenses. I can totally understand, therefore, why your son may well be thinking "sod this, enough's enough" ! Looking at his age profile, at 23, he may well simply want to just get on with his life and if he's formed the opinion that a graft is the means of achieving this end, then that's what's leading him to consider it.

So, a graft it is then ? Erm, no. Not without a lot of soul-searching. While the outcomes of many people's graft are excellent, some unfortunately aren't. The recovery time is long in terms of getting your final best corrected vision. There's the constant risk of rejection episodes, infection and complications from the immunosuppressant medication. And even when the stiches are removed from the graft (which effectively marks the end of the treatment) the graft remains a weak point as it will never have the integrity of tissue which hasn't been joined in this way.

The best I can suggest in summary is that you and your son get all the facts about all the options, then think everything through. We've got some excellent information (I would say that wouldn't I ) which we can send you if you like. Just ask. Also, the professionals dealing with your son can talk you through things as well. They sometimes are a little slow to volunteer information in my experience (I don't know for sure, but I have a suspicion they don't like being put in the position of making decisions for you), but they are invariably happy to answer factual questions such as providing statistics on graft survivability, mean best corrected vision outcomes and so on.

As I've mentioned, this really isn't at all easy so I've the greatest sympathy for what you and your son are having to deal with.

If there's anything more you need by way of additional information about the points I've raised, do please say.

Best wishes

Chris

Hello John,
All I can add to Chris's comprehensive reply is to say that if you would like the booklet and DVD which cover all the various options for keratoconus, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
Anne

Many thanks to Anne and Chris.

Anne - I've PM'd my postal address.

Chris - what a great reply. Re contact lenses, the Consultant at Sheffield was fairly non-committal, "it's up to you" sort of thing. Andrew has been getting his lenses from our local Vision Express shop where one of the opticians has an interest in KC. In fact, it was the optician who first identified the condition at a regular eye exam. I would recommend this optician based on our experience. He has bent over backwards, and then some.

We went to an appointment at Sheffield last Tuesday. Andrew did not see the Consltant but a younger doctor who, although he said he thought that a transplant would be needed also said that rather than struggle with lenses from VE, we could contact the Hallamshire's eye clinic who may be able to get a better fit.

I think we're only a short way down a long road here!

Thanks again

John

Hi jst..

First, let me say I know the team at Royal Hallamshire and they are excellent. The advantage of an NHS Clinic is that they do have access to a wide range of lenses. Although hospital appointments can be a long time coming through, it is well worth going down this route to explore all CL options.

Secondly, you don't say whether crosslinking (CXL) has been considered for either eye? This is an option that can improve corneal shape, and therefore vision, over a period of years and stabilise KC so that grafts no longer have to be considered.

Lynn

Hi Lynn

Yes indeed, the team at the Royal Hallamshire have been absolutely first rate. The downside is that it's a long trek for us but eased by lunch at the nearby Loch Fyne Restaurant!

I believe that cross linking in Andrew's left eye has been discounted because of it's general condition, although I confess that we had intended clarifying this but got side tracked with the corneal transplant issue.

John

Thank you jst at home and all the other people posting on this thread. My son has just been diagnosed with KC and we are at the start of a long journey of learning. He is about to be fitted with a lens. So this thread is useful. Please can someone explain what crosslinking is though?? I cannot find a definition. Many thanks.

Hi Rose and welcome. You'll find an explanation of crosslinking on the home page of this website at www.keratoconus-group.org.uk/treatments/c3r.html
(c3r is the original trade name for crosslinking, which we now call CXL and you'll find quite a few threads on the forum about it).
Anne

Thank you Anne, this appears to be a very informative and friendly forum. I shall be spending some time reading up about treatments and learning from other people's experiences. Thank you for your hard work responding to members.

Rose

Maybe the most immediate benefit your son can derive from the forum, apart from the information that can be found here, is the knowledge that he is not alone; and neither is his family.

Every good wish.

Andrew