Soft Lenses / Keratoconus

[Mknight]

Hi all, firstly I'd like to thanks the people behind this group/forum for providing a place for us all to share experiences about this condition. This is my first post here and I will write some more about my condition later, but I wanted to ask a few simple questions about soft lenses.

I've read about various newer soft lenses which propose to treat this condition so basically I'd like to know why isn't everybody using these lenses instead of the harder lenses? Surely if harder lenses are difficult for new users to become accustomed to and can only be worn for limited periods, aren't the newer lenses the better option? I know various companies offer these with different brand names, but for example the type I am referring to are the "Kerasoft" type of lens.

If we know that hard lenses are troublesome to wear, have to be taken out after set time periods and can in some cases scratch the cornea, then what are the issues with using a Kerasoft style lens? Theres always a downside, so what might it be? Cost? Their lifespan? Can anyone comment from experience?

Thanks

[Andrew MacLean]

Mknight

Welcome to the forum.

When it comes to questions here about prescribing and dispensing lenses we need to remember always that keratoconus is unique in each of us. If it were not so a single lens material and single lens style would suit us all.

Sadly what is suitable for one may not be suitable for another. I have tried soft lenses but never managed to cope with them. I have tried hybrids and piggy backs but still no joy. My all time favorite lens was a scleral; a bit daunting at first but comfortable when inserted and giving good vision. My problem with my scleral was that wear time was quite limited.

My own current lens experience is, therefore, a compromise or trade off between comfort / correction / wear time.

Another keratoconus sufferer may find that all three of these is amply met by a lens that gives first rate correction, is extremely comfortable and capable of remaining in the eye for a full day of wear.

Thank you for raising an interesting question. I guess there will be other responses in a moment.

Andrew

[GarethB]

In addition to what Andrew has said.

Cost is a big factor, RGP lenses are so common money is made on the shear volume that are made, soft lenses are taking off in some parts of the world, but once manufacturing volumes increase, the cost to make them will probably come down. It is now possible to get soft lenses in the USA which may help.

Knowlwdge on how to fit lenses, I have encountered many optoms who haven't fitted a soft lens since they graduated so no longer have the skills, so some that do try give up too easy. They can justify many goes at fitting an RGP lens but lack of knowledge makes justifying perservering with a soft lens difficult.

Perceived wisdom, there is still a number of optoms who say soft lenses just won't work. Ignorance basically.

Practitioners that look after us under pressure to hit targets rather than treat us as people. From the optometry seminars I have been invited to, very few appreciate the visual problems many KC people suffer as a result of the condition.

[Mknight]

Thanks for the replies chaps.

As a comparison, when i went to be evaluated for hard lenses at an NHS hospital I was told it would be £50 per lens, so what is the general ball park figure for the "new technology" soft lenses?

[NickDash]

Cost of lenses vary and you may get lenses through the NHS at a reduced cost through a HES voucher. Then you only pay a fraction of the cost.
Soft contact lenses will vary in price depending on the type that is required. Sometimes a monthly disposable lens may work that can cost between £10 a month (standard lenses) to £40 per month for (complete soft toric lenses)
Customised lenses such as the Kerasoft may cost in excess of £150 a lens. (Some of these lenses are recommended on a replacement schedule of three months, Privately the lens cost can be reduced by a direct debit scheme where lens replacement is every 3 months equating to a cost of £40-£60 per month.
These are only ball park figures.

Customised Soft Lenses such as the Kerasoft allow longer more comfortable wearing times.
Listening to patients over the years has suggested a price worth-while.
You can not put a price on comfort and vision!

Also put this in context of Cross linking costing approximately £2000 or Cross Linking and Reshaping in excess of £2500.

But I hope this helps clarify the issues discussed.

Nick

[GarethB]

With lenses supplied through the NHS as Nick says the price you pay is the same be it a cheap RGP lens or the more expensive scleral lens. Some hospitals only offer a limited range of lenses due to budget constraints and so apply thier value on quality of life which usually fall far short of what we would accept as a minimum.

The help persuade my hospital, I did a cost benefit analysis for them and myself. While I was wearing RGP lenses, the hospital was having to see me every three months and I would have at least 2 visits per year to eye casualty because of lens wear issues. These frequent visits were despite the fact that I could only wear RGP lenses for a maximum of four hours per day five days per week. Now I am on the Kerasoft IC lenses (over 2 years now), I wear lenses all my waking hours, seven days per week and only go to the hospital once per year. Now that I am at work more due to no more bad eye days, my pay has increased so I pay more in tax which also helps the NHS. The maintenance costs of the lenses (cleaners and so on) are 33% less than it cost me to maintain RGP lenses.

It is very much a case of finding a lens that works best for you but you need to be open with your optometrists, if soemthing doesn't feel right, you must tell them as lens fitting is as much an art form as it is a science.

[Lia Williams]

Gareth,

I completely agree that one has to be open and honest with the optometrists. Though sometimes I feel like I'm complaining when I have to explain that the lens that they spent hours fitting last time just doesn't work.

One thing I did last time was take with me to my appointment a table I'd drawn up of comments on the past sets of lenses. I listed thing like the acuity of distance and near vision, and how stable the vision is, comfort levels, and ease of removal. By having this all written down I was able to describe objectively how the new lenses were functioning. It saves leaving the appointment thinking 'I should have mentioned ....'.

Lia

[Mknight]

Also put this in context of Cross linking costing approximately £2000 or Cross Linking and Reshaping in excess of £2500.

But I hope this helps clarify the issues discussed.

Nick

Guys, thanks again for sharing your experiences about this condition. Regarding the procedures mentioned by NickDash, am I correct in thinking that they are only relevant for younger sufferers whose condition is still progressing and not for older people that have stabilised?

[Lynn White]

Hi McKnight

Just to re-iterate, in simple terms, It should cost no more to get a soft lens through the NHS than an RGP... ie £52.90 per lens. Same goes for any other lens type. The difference in actual supply cost is taken up by the NHS.

Why are they not more widely used? There is an interesting historical context here.

When small corneal lenses were first introduced around 40 years ago, it seemed rational to assume that corneal irregularities were best corrected with a rigid lens material that "smoothed out" the cornea or indeed "pushed back the cone".

Although this is now acknowledged to be not true, it still feels "instinctive". It is really hard for anyone to understand why a soft lens works and to be honest, its an area that is undergoing a lot of research to fully understand why the lenses work as they do.

One interesting point is that, actually, much of the corneal change happens on the back surface of the cornea, not the front. Thus it is not so much changing the corneal shape as compensating for corneal thickness changes that makes soft lenses a viable option.

The main point is that soft lenses DO work and need to be considered equally alongside all other CL options. Why they are not is that it takes a while to change attitudes.

I have lectured all over the world on soft lenses for KC and the same issue comes up all the time... fitters of rigid lenses tell me "All my patients get all day comfortable wear in RGP lenses. Why should I even think of refitting them in anything different?"

And you know what? This is entirely true

Patients DO tell practitioners they are fine in their lens modality when they are patently not. Why? Because they are afraid to complain in case their only means of seeing is taken away from them.

This completely understandable response is unfortunately responsible for lack of change in dealing with KC conditions. There are now many different CL and surgical options available for KC but very limited/area dependent supply through the NHS.

To make a difference requires people to question the status quo. If one lens modality does not work, a different one may just do the trick. If your condition is changing, then CXL may well stabilise it.

Management/treatment of KC is changing all the time.

Lynn

[longhoc]

Lynn brings up an interesting point there.

There's probably some important psychological affects that get in play for long-term Keretaconus patients. A couple of brief (by my standards of writing !) observations:

1) I have myself got into the position after an exhaustive fitting / re-fitting process for RGPs conducted in clinic whereby I have colluded with the practitioner (and really, it's not fair in any way to blame practitioners – they can only work with the materials they have and the observations / comments from the patient) to pronounce a lens “okay” even though in reality it really isn’t. A combination of frustration, tiredness and not wishing to be “awkward” are I guess some of the possible motivating factors. Whatever the reason, it is very much a risk. The only solution would seem to be more candour from the patient (i.e. us lot !) and more awareness from the practitioners.

2) The management of Keretaconus (certainly in the UK) also contributes to the “it’s okay, no, really it is” dynamic. I can of course only speak from my experience, but basically, you get to the point with a RGP-only practitioner where they more-or-less throw in the towel and say “not much more I can do for you Chris, we’d better get you looked at for a surgical evaluation”. Well, guess what ? Faced with that prospect of corneal grafts or transplants, as if by magic, that uncomfortable lens suddenly doesn’t feel quite so bad. And thinking about it, maybe I don’t really need more than 6 or 7 hours of just-about 6/12 a day...

If we knew there were other options, we might actually start asking about them. But if we don’t, perhaps we just keep playing the “the RGPs are fine” game...

Chris