Soft Lenses / Keratoconus

[Ali Akay]

I fit soft lenses for KC regularly (both Kerasot/KIC and Acuity Soft K) and I know that can work exceptionally well, but, as Gareth says, no single lens type works for every patient and patients need to be offered the lens type most suited to their requirements. I am sure Lynn wont mind me saying that she is biased towards soft lenses, she doesnt make any secret of this, and indeed its a well known fact that she is the brains behind the Kerasoft lens and I have great respect for her. However, there are thousands of patients who do get on very well with gas permeable lenses and live a perfectly normal life, just attending for annual check-ups, and I am not sure it would necessarily be in their best interest to be fitted with soft lenses.

So, why are soft lenses not used more for KC?
Probably the biggest factor is that a lot of practitioners aren't convinced that they work as conventional wisdom suggest gas perms should work better! The problem is that getting the fit and prescription optimised with soft lenses often needs more time and perseverence which is often difficult in busy hospital clinics. I am sure some practitioners try them and expect success at the first attempt, then they decide they dont work and give up. I think it has to be said that its simply not realistic to expect soft lenses to work in every case, if they work its great, if they dont then one looks at other options.

Cost is also a factor unfortunately. Although cost to the patient is same for all types of lenses, cost to the hospital certainly isnt! This is partly due to initial cost, and also ongoing cost as lenses need replacing more frequently. Hopefully as soft lenses are used more the cost would come down and more practitoners might be persuaded to try them. I realise the comments made about quality of life and cost of extra appointments due to hard lens related problems that Gareth has mentioned, but there's certainly pressure on hospital budgets in the current economic climate which doesnt help.

[Lynn White]

Hi Ali

Actually, you made me think hard about the "biased" bit.

My first instinct was to say that I specialise in soft lenses, which is an entirely different thing. Over the years, I have become more and more involved in soft lens design and its application for keratoconus and irregular cornea, so this is the main area of my work. It is natural that I see contact lens fitting from a soft lens aspect and as you say, I make no secret at all of that.

Now, originally, I saw my work with KeraSoft as one of creating an alternative lens type. However, over time, I have become very aware of the difference soft lenses made to people's lives who were struggling with other lens modalities. The greatest impression on me was made by my own patients who volunteered to do video testimonials for KeraSoft. As in, they had not even told ME how much they were struggling before they were refitted and much of the unshown footage is very moving. This is why I can say quite candidly that patients simply do not tell us everything.

What made me really think though, was the reaction of people who to all intents and purposes successfully wear RGPs and are refitted in soft for one reason or another. For example, Gareth is one of those. He originally only volunteered to try soft lenses for R & D purposes but ended up wearing them all the time and it really did change his quality of life. Yet, if you had asked him before this if he got on well with his RGP lenses, he would have said he got on excellently.

Next, the work of McMonnies in Australia and Kenney in the USA has shown how biomechanical and biochemical stress impacts on the development of KC. At last year's BCLA, the academic panel on keratoconus concluded that lenses that were as "kind as possible" to the cornea need to be developed.

Additionally, some KC corneas are so irregular that no rigid shape can easily sit on them and ironically that often means early low cones rather than advanced central ones. Therefore it makes sense to utilise a CL material that is flexible enough to fit these corneas but rigid enough to hold its own shape where necessary.

Combine that with new technologies of CXL combined with other surgical techniques and you have a developing situation where in the future we could, theoretically, halt KC progression at a stage where even disposable softs could be worn.

So, my "bias" now is certainly to fit soft as a first choice and ONLY go to rigid when there is no alternative. Another reason for this is your own thought that "I am not sure it would necessarily be in their best interest to be fitted with soft lenses" when referring to people already in RGPs. I agree totally because long term KC RGP wearers have undergone corneal moulding by their lenses and the cornea can take weeks or months to demould and stabilise into a soft lens. (btw even soft lenses cause moulding, especially with KC corneas that are inherently weaker than normal). If a patient comes to me and is wearing an RGP they are happy with and it is not causing any physiological problems, I would not change them out of it.

Therefore my bias is driven by the fact that converting soft lens wearers to RGP is far less of a problem than the other way around, so why go immediately to RGP?

The last part of your post is a completely valid practical view. Fitting RGPs can be quick and relatively inexpensive (though I would argue that in quite a few cases, this is not a given) and this is why they are still fitted in such numbers in the NHS.

Lynn

[Ali Akay]

Hi Lynn

Regarding your remark that Gareth got on excellently with his RGP s it'd be interesting to hear his comments as, reading his previous posts, I thought he had a lot of issues with RGP s prior to being fitted with KIC.

I listened to Christina Keeney's lecture at last year's BCLA conference with great interest, and, at the end, asked the panel whether, in view of her research, we ought to be thinking about fitting soft lenses as first choice. Unfortuntately none of the panel members voiced the opinion that we should which made me think that the jury is still out on that one! My personal view is that if rigid lenses are fitted properly without causing unnecessary insult to the cornea and fit is monitored regularly, and the patient tolerates them well then, with our current knowledge, it's unlikely for the lenses to cause a progression of KC. I know a lot of "if"s! As you know I am very much for fitting soft lenses and have been using soft lenses for KC since early 90s. We have hundreds of KC patients happily wearing soft lenses at Addenbrookes and other hospitals. I remember a patient about 10 years ago who had reached the end of the road with rigid lenses and listed for transplant. He saw me the day before surgery and we tried soft lenses, he was so pleased he cancelled the surgery and managed very well until last year when he eventually had a corneal graft as vision deteriorated due to thinning and scarring. What I dont want is for patients out there currently wearing rigid lenses and getting on well with them to think that somehow they've got second best and they ought to be having soft lenses. It would also be worth mentioning that I have come across patients on a number of occasions who found rigid lenses more comfortable than soft. As you know rigid lenses can also be easier to handle as some patients find soft lenses harder to handle due to their large size.

Regarding the view that its much easier to refit a soft lens wearer with rigid later on, so why fit rigids first, the problem is Lynn that once a patient is used to the comfort of soft lenses, if their KC progresses to the level that soft lenses no longer work then its often a struggle for them to get used to the initial adaptation rigid lenses need. However, if a patient has never worn lenses before, and is told he needs to wear rigid lenses, there's a good chance he'll get used to them as millions did in the 60s with old hard lenses before soft lenses were invented. Obviously if he doesnt then he needs to be offered soft and other options. So, I am afraid there's always a counter argument!

I am sure, in time, soft lenses will be used more and more but if the argument is made that they're the best thing ever and they always work there's a risk of losing credibility when practitioners try them and cant get the results they were promised. So, it all comes down to whatever suits a patient best as long is its not having a detrimental effect on their eyes.

[Lynn White]

Hi Ali

I really am confused here. You are saying that if one fits patients with soft lenses who may possibly need to go on to RGP lenses later (and no-one know this at the time?), then, because it "may be" a real struggle to get them converted, it is best to bypass the soft option altogether? What if they wouldn't ever lose the ability to wear softs? Or are you really saying that its best to deny a patient, say, 10 years of comfortable vision just in case they may need to change lens modality at some unspecified time in the future?

One could also say, because its difficult to get people adapted to RGPs, one should really go straight to piggy backing or hybrids?

All I am saying, quite reasonably, I think, is that vision correction should be a progressive journey from spectacles (not enough energy is given to maximising Spec Rx I think!?) to disposables, to Rx soft to dedicated KC softs to RGP to other rigid lenses/piggy backing/hybrids/sclerals. Its a natural progression and at every stage the patient has the option to choose modality. If someone chooses to have a spec Rx instead of lenses or a soft lens instead of RGP or an RGP instead of a scleral, then, surely, it is the patient's choice and they have the final say as to how much vision they have with the trade off against comfort?

I also thought I did say quite categorically (and agree with you) that patients who are currently happy with their current RGP modality should stay with it?

I am certainly NOT saying that people with RGPs should think they have second best. What I am saying is that the soft option should be tried if patients want it.

I too, today, saw a patient who, a year ago, had been told grafts were the only option. At that time, he had not seen anything for over 5 years as he could not tolerate rigid lenses or sclerals etc.. He underwent CXL and had soft lens fitting afterwards. Today, he is 6/9.5 binoc and grafting has been put on a very back burner.

I really am at a loss why soft lenses are getting so attacked? McNight was originally asking why soft lenses are not fitted more frequently as opposed to RGP lenses. As they do actually work (and to emphasise that point, KeraSoft now has FDA approval in the USA and Bausch and Lomb have now licensed the lens for global distribution, so this is not just me saying it!) all I am saying is that patients should have the choice to try soft lenses, whether they be disposable, prescription soft, Acuity, Soflex, or indeed KeraSoft (the type makes no difference!) and not be told they will not work (which frequently happens).

Ali, I also fail to see where I have said they are "the best lens ever?" I have said I specialise in them (and in fact I have around a 95% plus success rate with softs whatever the IC condition) and go to other modalities when they fail or refer on to others who may have better skills in other areas, be it CL or surgical.

I do find all this rather odd as I know you do acknowledge soft lenses work. And all I am saying is that patients have a right to ask for ANY CL option. I do know that, in the NHS system, patients are frequently told that soft lenses will not work, as most of my private work is fitting soft lenses to people who have been told that very thing.

Any patient, as you so rightly say, has the absolute right to try any lens option they want to. All I am trying to do is to explain that soft lenses ARE an option because so many patients are told they do not work. (And please do not say that doesn't happen because it does!)The same goes for scerals or SoClear for that matter. Patients are often told there are no other CL options either because of potential expense or lack of fitting skills. I know you are totally honest in your NHS clinic, Ali, but believe me, other clinics are not.

To go back to the BCLA, the academics there did not actually know that there were many soft lens options out there, particularly in SiH material. I talked to Cristina Kenney after her lecture and she was clear that we need to work towards a holistic system of dealing with KC. This may mean a change to the way CXL is done, for example, as UV light, a KC stressor, is a major part of the procedure or it may mean that we home in on supplements and vitamins.

Its a really exciting time for KC right now. Lets not argue about lens types!

Lynn

[Andrew MacLean]

My referee's whistle is about to go peep peep!

Actually this professional discussion is interesting and it is good that it is being conducted in the open forum, I just wonder whether it might not be time for a separate string to be started.

Don't stop!

Andrew

[Ali Akay]

Lynn
I think we should move on from this as I think we are causing more confusion for everyone. When I graduated in 1982 I did my pre-registration year with a great guy called Tony Shephard who spent most of his professional life designing lenses for KC and other complex conditions. I worked with him ever since except for a brief period, and the main lesson I learnt from him really wasnt how to design and fit lenses, but to show compassion and empathy to patients' problems. He started experimenting with soft lenses in early 90s initially for patients who were RGP intolerant, but over time he often used them as first choice as he was getting such good results. His design became the Acuity Soft K lens which I still use a lot as well as Kerasoft/KIC.

Between the 4 NHS hospital clinics we run and patients coming to our private practice I can tell you that I do see an awful lot of KC patients at all stages of the condition and coping with it in all sorts of ways. When I see a patient I discuss the lens options with them, and based on their topographies, history, atopies, occupation etc I would guide them towards the lens choice I feel would work best for them, and I always reassure them that, if that doesnt work, we can always try other lens types in due course. I can tell you that soft lenses are quite often my first choice, but not everytime. I am sure you will agree that we just do not have the luxury in the HES of going through the whole array of lenses from disposables to sclerals due to time and cost constraints. Regarding the soft/rigid debate I have also encountered several patients who were getting on very well with soft lenses and could see very well, but when refitted with rigid lenses they were amazed at how much crisper their vision was! So, like some RGP wearers who havent experienced soft lenses and putting up with their discomfort, there are patients putting up with the inferior vision you sometimes get with soft lenses because they havent experienced the sharp, crisp vision of rigid lenses! So, again, there's always another viewpoint.

So, I think we got to agree that soft lenses need to be offered more often when appropriate and leave it at that. You say you get 95% success rate with softs, but a lot of other practitioners simply cant match that and your success rate could give some patients unrealistic expectations. So, please continue doing your workshops and educating other practitioners and I think you will find that people will eventually start taking notice.

[Lia Williams]

Lynn and Ali what a fascinating discussion! It’s really interesting to understand some of the other issues behind the fitting of contact lenses for keratoconus.

Thank you,

Lia

[GarethB]

Prior to moving to soft lenses, even with 8 hours lens wear (4 hours per eye!) I considerd myself a succesful RGP lens wearer and never questioned this. Simply because although I was always aware of the lenses being in my eye, this is what the optometrist told me from the start so my expectations had been lowerd. Plus after finding this forum the level of RGP lens wear I had was better than many on this forum so you question less the options given to you and think yourself lucky.

We are told by both practitioners and people on the support forums round the world that KC will often have a negative inmpact on your life so again you expectations are lowerd and when we compare stories we think ourselves lucky.

I only started to question this because I really wanted to get involved again in a hobby I had persued for most my adult life, being uanble to see my daughetr in nativity plays because I'd used my lens wear time to earn money to support a familly and after having to alternate between eyes, loosing a lens while driving down the motorway going from perfect vision to unable to see the steering wheel infornt of me!

Now the priority for me is quality of life and I am very fortunate in finding alens that gives me just that. So far I am yet to find the limit of lens wear with these soft lenses. Yes you are supposed to change them every three months, but I don't. Simple reason is that I build up a reserve and if one wears out, then straight onto a reserve lens knowing I still have some and no need to take time off work or wait for the NHS to give me an appointment.

I have now spoken with many soft lens wearers and it is very clear how RGP lenses affect the eyes, even on what all professionals consider a good fit. I have met people who can see better unaided now they are out of RGPs and some who see worse but in every case their topographys have changed due to the moulding effect of the rigid lens which is what Ali and Lynn have been talking about. Is it wise therefore to be putting an already weakend tissue under more stress by continually changing its shape with lenses? To me it is like bending a piece of metal gently at the same point, do it enough and the metal breaks.

My grafts are now over 20 years old and I am eternelly greatful to those who donated them to me, however there is the nagging question with the knowledge that I know have, how much of the damage to my corneas was down to KC, the impact of the lenses and the lack of lens types available back in the late eighties? Could my grafts have been avoided so that someone more deserving could have the same gift of sight that I have enjoyed for so many years?

My current opinion is that if in the future I can no longer enjoy the level of vision I have with soft lenses (more likely to be with my right eye), and was told I needed RGP lenses, I would rather go for a pain free option and be partially sighted. After all there are many visually impared people who live full and active lives that have fewer vision choices than us. Only time will tell if this current opion changes.

[Lynn White]

Hi Ali

Well I don't think we are confusing people, I think they are fascinated. Andrew, starting a new thread might work but it might also stop the flow, so I will rely on your moderating skills to find a solution.

Ali, I know we are both talking from the same side, really. However, if working with KeraSoft has taught me anything, it is that there are many other practitioners out there who simply either do not care or do not want to know about other lens options. This might be harsh but it is true. I very obviously do NOT include you in that group!

For example, when I was out in India, I discovered that most RGP lenses for KC are fitted, using anaesthetic to reduce watering, in around 15 minutes flat. Many wearers are in total shock at how the lenses actually feel without anaesthetic and many end up not wearing anything at all. Sclerals are available but expensive, as are soft lenses. So, trying to get practitioners to even think about soft lenses for KC was an uphill struggle. "Takes longer than 15 minutes to fit? Forget it. I have to do an over refraction to correct astigmatism? Are you serious?"

So do you just give up talking about it or actually do something? And that something was talking about patient choice. Patients being able to choose whether they sacrifice a little clarity of vision to wear lenses all waking hours, or have really crisp vision but less wearing time. Or, in fact, wear each type at different times of the day? And there ARE some patients who get better vision in softs than RGPs. I am not trying to raise patient expectations by saying that, I am just saying its a fact.

On my second visit to India, I gave presentations that included patient testimonial videos. I also had up on stage a young professional cricketer, Abishek, who had had to stop playing because he could not tolerate his RGPs long enough to play an entire match. He explained he could now, after being fitted with softs, play again and his vision was just the same, if not slightly better than in his RGPs. The audience asked him if he would go back to his RGPs and he said no, because with the RGPs he was always getting dust and dirt under the lens when playing. Plus, he now got all day wearing time.

All of this is gradually persuading optometrists and ophthalmologists to try soft lenses in India. A lot of it is driven by patients asking their professionals about these options.

So in this debate I am not aiming any of this at people like yourself who do give - and show - the patients the various options. It is aimed at persuading those who will not even think of trying them to at least let the patient make the decision.

I am sure you will agree that we just do not have the luxury in the HES of going through the whole array of lenses from disposables to sclerals due to time and cost constraints.

I do disagree with some of that. I do not think it is right or correct to base how we develop best practice for any condition on how well the NHS can afford to do it. This is especially true now that we have to face massive cuts all across the board. What you are essentially saying is that KC NHS treatment stays at the RGP or grafts scenario and really, we should not raise patient expectations to be more than that.

Years ago, when I first came into optics, patients were left languishing on cataract removal waiting lists, as to operate merely left them unable to see out of both eyes simultaneously. The lucky ones got fitted with contacts afterwards but even so, you were looking at 18 months wait to get anything done. Then came along Intra Ocular Lens Implant surgery which was driven by the private sector until it was accepted that actually, it made overall economic sense to do this in the NHS.

It is inevitable that change does happen. Much as we try and stick fingers in dams, they break and floodwaters change the landscape for ever.

Privately, for KC, you can get CXL, INTACs, IOLs, T-CAT etc as well as any lens type you are willing to pay for. Outside the UK, such as in India, Pakistan, the Middle east and so on, such techniques are now common. Many of my patients go abroad to get CXL, as its cheaper.

Do we say to UK patients that they have to accept that as the NHS cannot pay for any of this, they have to put up with whatever they are given? Sooner or later, change will have to come and alternative ways of financing KC treatment will have to be found. The fact that it is a relatively rare condition means that not enough thought has been given over the years to how the condition is managed. Laser clinics are changing all of that, as they discover many more early cases of KC than we ever suspected existed. It is entirely inappropriate that these patients are put straight into RGPs.

I saw a patient last week who has effectively had poor vision for over 5 years simply because all he was offered through the NHS were RGPs and was told that there were no other options. The lenses gave poor vision and were intolerable to wear. He was not referred to other NHS centres who could have helped him. This is not by any means an isolated incident. Is it right we just accept this situation?

Yes, the NHS is over stretched but what is to stop hospitals becoming centres of excellence for certain types of lenses? If a hospital in Birmingham, say, chose to develop a speciality in SoClears, and Nottingham sclerals whilst another did the same with soft lenses, patients could have the option of going outside their own area to be fitted. This, of course, is theoretically what is supposed to happen right now anyway, but it simply doesn't.

Change will not happen unless awareness is raised. If people do not know that soft lenses for KC exist, then they are being denied the chance to make an informed choice about their own treatment. The fact that the NHS cannot cope with patient choice is not where we should be starting this debate.

Finally, Ali, I do not see raising patient expectations to be bad thing. But maybe that is a female thing... after all, women were once told not to even think about being able to go to University, forget being a doctor or being able to vote. Even talking about it would raise unrealistic expectations, as it would never happen. So, if everyone had accepted that, you and I would not even be having this conversation because I would not have been allowed to become a professional.

Lynn

[Lynn White]

Hi Gareth

I was not ignoring your post... I was too busy writing to notice you had posted!

Thank you for explaining about how you previously thought you were a successful RGP lens wearer, as I really couldn't go into details on your behalf!

I recently saw a patient who came to me and explained he was a successful RGP wearer but needed a bit more comfort for one of his eyes. His "successful wear" turned out to be restricting himself to only working 3 days a week as he could not rely on his lenses being wearable for more than 3 days at a time.

As you say, when expectations are set too low, this is what can happen.

Lynn