IC Break Out

January was major jet lag time as I spent the first part in India (5 hours ahead of the UK), flew back for a few days to the UK, then off to Las Vegas for the Global Specialty Lens Symposium (8 hours behind the UK). My brain still has no idea what continent it is on and I am still absorbing everything that I saw and did.

India
The reason for my visit was twofold. As a consultant for Ultravision, I was involved in the launching of KeraSoft

Optics India Style

Eyecare in India and was lecturing and giving workshops. As an individual and member of the ICF (Irregular Cornea Foundation), I was eager to see how keratoconus is managed there. The condition has been reported as being up to 4 times as prevalent in the Indian population and possibly as much as 9 times in the Pakistani population in the UK (Cozma, Atherley and N J James. Eye (2005) 19, 924–925). This high incidence appears to be related to the custom of marrying within extended families and thus supports theories that suggest there are genetic factors in keratoconus.

My visit took me to Hyderabad and Trivandrum which are quite different to each other. Hyderabad has some lovely tourist attractions – however, I never got to see them! I spent my time in hospitals and travelling in between them on Hyderabad’s incredibly busy roads. Now I have driven in Trinidad, which is an experience in itself, but this really was hair raising. Have a look at a couple of youtube videos…  Traffic 1 Traffic 2 which gives some idea of what it was like! Trivandrum is on the coast and sub tropical and very much more laid back.

India is very much different to Europe in the way keratoconus is managed. The first choice for contact lens fittings is very cheap (compared to the West) RGPs, which tend not to be dedicated keratoconic designs and also suffer from lack of rigorous tolerance control, such as British Standards. These tend not to be ideal and many patients give up wear in the first few weeks. There are more dedicated keratoconus designs such as Rose K and Boston scleral available, but they are relatively a good deal more expensive and thus many cannot afford them. Surgical procedures are relatively very much cheaper than in the West and so many opt for surgery for keratoconus rather than contact lenses, as it is seen as being much cheaper long term if you do not have to maintain and replace lenses. Thus, many people from all over the world attend Indian eye hospitals for a whole range of surgical procedures.

Chaitanya Hospital

Does this work? Well, for keratoconus you can take advantage of CXL, phakic implants and probably laser smoothing of your cornea and the chances are you will end up with reasonable vision in glasses or ordinary contact lenses. However, for those who have more advanced keratoconus, even these procedures may result in the need for contact lenses as there is a limited amount of laser work that can be done on thin corneas. Anyone used to the cautious approach to new procedures in the West (and particularly anyone from the US) would be amazed at what is being done in these clinics. It will certainly be interesting to see the long term results from these procedures because often they are being performed on cases that certainly would not be operated upon in the UK.

I visited several hospitals during my stay:

Apollo Avarind Maxivision Swarup Vasan (video of Vasan) Chaitanya and LVPEI

I demonstrated the KeraSoft lenses in many of the hospitals and this was a sharp learning curve for me, personally. In the UK (and indeed the US), contact lens fitting is a long process, relatively speaking. One of the reasons why costs are high for specialty lenses is the chair time taken to get a good fit.  In India, chair time for RGP fitting of keratoconus is around 10 minutes! Fitting is often done using local anaesthetic to cut down the settling time. Now, having studied RGP success rate in India, it seems clear to me that the lack of time getting a really good fit and the use of anaesthetic contributes to the high drop out rate. However, clinicians in India would not necessarily agree with me!  Another issue in trying to demonstrate a soft lens for keratoconus is the lack of general optometric knowledge of how to fit complex toric soft lenses. This again is down to cost – such lenses are very much more expensive than other types and tend not to be fitted. Hence, initially, soft lenses for keratoconus were regarded as complicated and time consuming compared to RGPs to some of the clinicians during my demonstrations.

However, patients do have an input in this process and they were quite happy to, in some cases, sacrifice a line of vision on the chart compared to RGPs to have lenses they could actually wear. Most others got equivalent vision anyway, so were pleased in any case!

Discussing a case in Chaitanya Hospital

Chaitanya announced a tie up with KeraSoft India during my visit. A clinic dedicated to KeraSoft will be set up within the hospital and I spent time with the staff explaining how to fit the the lenses.

One patient I saw there had very advanced Keratoconus in the right eye and a relatively normal left eye. The staff had not been able to get any refractive results in that eye at all and had not been able to fit a rigid lens. With the KeraSoft plano fitting lens, he attained around 6/18 (20/60) with an over refraction of -25.00/-20.00 x 180. It was difficult to make a decision as to what to do next. Would he be able to cope with using 2 eyes together if he was fitted? Due to magnification factors, it was likely he would get much better vision in the actual contact lens and if the eyes did not work together he would get double vision. In the end, the decision has been made to give this a try and I am waiting to see how he gets on!

The interesting thing about the India trip is that I was constantly being told that keratoconus management was “different” there. Certainly some of the initial reactions of the clinicians to soft lenses for KC made me think this was inevitably so. However, in the end, it was the patients that showed me that keratoconics have the same issue the world over. It is quality of life issues that run true wherever you are. Irrespective of lens type or surgical procedure, what a keratoconic wants is manageable, stable vision each and every day without having to think about it.

As the meerkats say, “simples!”

This blog didn’t get very far after the first rush of enthusiasm – mainly because I have been impossibly busy this year. Actually, that’s not usually a good excuse where I am concerned, as I always seem to find time somehow! However, the usually stagnant backwater of keratoconus and irregular cornea has been stirring a lot of late and it has been hard simply keeping up with developments.

Where to start? Well, its interesting to see how keratoconus, say, is handled in various countries round the world. Most people assume its the same everywhere, but actually, the differences are stark. I lecture in other countries and also see patients from around the world and the differences are extremely interesting. I talked to a patient the other day who was remarking that it was confusing that no-one in the UK hospitals seemed to take topography maps. He had been in Canada and the US, where topography monitoring was a matter of course.

One of my first questions, when I lecture at UK hospitals to contact lens departments, is “What topography machine to do you use?”. The answers I get vary from “Don’t have one” to “We have one somewhere but never use it ” to “The ophthalmologists have it in their room and we only use it when its free” to “ We have a Pentacam and we use it all the time” At the recent Hospital Optometrist Conference in Harrogate, several very able optometrists confided they thought fitting keratoconics without a topography machine was bordering on negligent whilst other equally able practitioners declared they were not that accurate and a waste of time.

Myself? I am in the camp of thinking you can’t really practice in the modern world without one, although I agree that they are not that accurate in defining a irregular cornea – more of that in a later blog. Traditionally, grading of keratoconus could be accomplished by assessing how rigid lenses fitted on the cornea. The lenses themselves were a kind of diagnostic tool. This is partly how corneas were assessed in the US CLEK study.

This was fine if you assumed the KC was reasonably advanced and you were going to fit RGPs anyway. However, nowadays, surgical options are open to people in the very earliest stages of KC. Although CXL is still contentious, there are people willing to treat, and undergo treatment, when KC only just starts to impact on vision.  There is a point to saying that the main reason for having CXL is to do it when you are still 6/6 and have hardly any prescription change and you can then forget you ever had KC. Done and dusted.

On the other hand, we still do not know what happens to a cornea having had CXL after 20 -30 years. Many more cautious people think its best to monitor KC and only do CXL when there is absolute proof of progression. Then there is nothing to lose. As some people never progress beyond a very mild stage, this would seem sensible advice.

However, in the UK in particular, we have absolutely no coherent medical policy in place to monitor small, minor changes in KC corneas. Keratoconics have traditionally been funnelled into the NHS system and they are geared up to dealing with established, obvious cases of KC and do NOT use topography as a mainstay. The High Street in general have no part in dealing with KC and know little about it, so do not invest in topography. There are some private optometrists around whop deal with keratoconus, but they are hard to find and in fact, the main group who can monitor such corneas are private laser/refractive surgery clinics and surgeons who deal in keratoconic surgery.

The clinics have all the cutting edge equipment necessary as they use it for refractive surgery. They are the ones who often detect early KC as topography is performed to see if you are suitable for surgery but I am not sure if they would be happy spending a lot of their consulting time monitoring KC.

In the UK, CXL is still undergoing assessment and is very expensive due to the stringent controls imposed on equipment and procedures by European CE agencies. In other countries, with no such controls, CXL is very cheap – maybe only £200 – £300. This is the cost of a pair of specialty contact lenses and so it seems more sensible to do the surgery than fit people with contact lenses they will have to wear for the rest of their lives. In the US, not only is CXL still undergoing lots of FDA trials, many contact lens development are completely stymied by FDA requirements, as its so expensive to get any inventions approved. Thus, ironically, you are likely to have much more choice as a keratoconic in some “third world countries” than you are in the first world.

Whatever your view, CXL is out of the box and here to stay. To make best use of it, we need to up our game when detecting and managing early KC and also in managing post refractive surgery patients, and there are now millions of those out there. This means detecting KC in its earliest stages, monitoring it, managing with soft lenses as well as RGPs (give the patient a choice!), advising patients of all surgical options and being able to manage patients post surgery.

Hospital should be for advanced cases that cannot be managed in the community, not for managing mild cases that may never progress.

What do you think? Let me hear your views!

I am a contact lens practitioner whose work, nowadays, is totally taken up with keratoconus and irregular cornea. As well as my work, I also post messages on many KC forums as a professional giving help and advice. Up until recently, I have tried to be as neutral as possible about lens types, as I am a consultant to a company that manufactures soft lenses for KC and I did not feel it appropriate to promote one type of lens at the expense of another on any forum. However, over recent months, I have increasingly been reading that people have asked their contact lens fitters for  options other than RGP lenses, only to be told that nothing else will work. Especially when they say soft lenses will not work “at all”. This thread is an example: http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=5050

As someone who fits these lenses all the time, even to advanced keratoconus, it can be somewhat frustrating. Especially as the long term effects of wearing RGPs lenses includes central scarring.  It came to a head for me, personally, when a new patient came to see me with significant central scarring from RGP wear. He had large, raised, swollen scars which immediately reduced down when he swapped to soft lenses for KC (and incidentally, he also got better vision than in his RGPs) The KC was progressing, so I referred him to an ophthalmologist for CXL. He was turned down because the scarring, although much reduced, was just too much for CXL treatment, as it would not take evenly.

I have also seen several patients who acquired scarring post CXL because they went back to their RGPs too quickly. This can happen because post CXL the cornea changes shape over a few weeks post op and what was pre-op a well fitting lens can very quickly become a badly fitting one and cause central abrasion. This was actually an issue raised in the recent UK NICE CXL consultation documents.

Yes, KC patients do get scars. These, though, are usually irregular and “natural” in shape. RGP induced scarring is usually a circular “scuff” mark, right on the visual axis – in other words right on the area of the cornea you are looking through. There have been many studies that imply that RGPs cause scarring but one of the problems is that it is hard to be sure since most people have worn RGPs at one time or another if they are KC. (See pictures on my web page).

However, I have worked in a country, Trinidad, where there are a high proportion of people with KC and many who refuse to wear RGPs becasue of the confort issues. And those who have never worn RGPs do not have this central scuffing. I have lectured on this subject round the UK and abroad and my point has been to those practitioners who maintain that either they never have patients like this or that they make sure their patients are well fitted: “Yes, but you cannot legislate for patient behaviour.”

If you say to a patient that RGPs are the only thing that work and they cannot have anything else, what happens if the patient has problems? Sure, some are very good patients but MOST avoid coming back at the first sign of trouble because they KNOW you will say leave them out. And they cannot function without them ….so they leave them in. This is when damage starts.

In some respects, when there really were no other options and grafting was readily available, allowing central scarring from RGPs was probably justifiable as the patient had to be able to see. However, the world is changing. Not only are there new treatments for KC and IC, there are a whole new range of contact lenses, including soft lenses that DO work – even on quite advanced KC. Grafting in the UK is also becoming increasingly difficult due to lack of donors. So it is important to try avoid central scarring as much as possible.

I thought about all of this very carefully and made a decision: I would no longer fit new cases with RGP lenses. In my mind it’s a logical progression. If I believe that RGP lenses cause damage, if I even lecture about it, how can I justify myself to a patient who develops RGP related scarring? On a more selfish point, how could I defend myself in a future legal case if someone was refused treatment such as CXL because my lenses had scarred them? Its a very real prospect in these litigous times.

So I, personally, have now stopped fitting RGP lenses to clear KC corneas. If its the only option for a patient to see and they are already scarred, then maybe. But in any case, I achieve good vision for most patients with soft lenses anyway, so I really have no need to go there. To practitioners who insist that RGPs are the ONLY lens that works for KC patients…I say think again, as there are lots of options out there for your patients now!

If you have KC or IC and are told that RGPs are the only option for you, but you cannot get on with them – then do the research and get the second opinions. Changes in the way these conditions are treated will only come from pressure from “patients”. If everyone accepts the status quo then there is no reason for the status quo to change. This applies to life in general and IC is no different.

Lynn