KC parameters and soft lens advice

[JohnnyB]

Hi,

New to the forum, I have had KC for some decades now and apart from the initial shock and the pain of getting used to RGP lenses ( took some months mind) and the usual dust/dirt problems I have had no real issues with reasonably good vision. Not good at sporting events or concerts though!

I have had to start using reading glasses on top of my lenses of late, for reading and computer work, and note that my long vision has deteriorated and the reading glasses actually help this- just recently revisited a new optometrist to try and rectify this.

Have to say he has been quite thorough and I've just had the longest 4 days of my life without my lenses in so he cold take some new eye readings.

My first question, from seeing my results, which haven't changed really for some years is what is the definition of keratoconus in number terms ( lens thickness etc) - since he says mine is very mild in one eye and marginal in the other? The purpose of this is to ascertain what my options going forward may be- could I consider conventional laser treatment?

Primarily I would like to improve comfort, seen several hybrid/ soft lenses mentioned in the forums, so would welcome any links to posts or any advise. And my utopia would be if I could find a lens that would also correct the need for reading glasses- I note Synergeyes do a multi focal lense- has anyone with mild KC had success/experience of doing this with mild/marginal (what ever that means) KC?

[jay87]

Hi JohhnyB and welcome to the KC group forum!!

There are various measures of KC and progression, from corneal topographies showing the shape of your cornea to measures of the thickness of your cornea. As far as i'm aware a constant contact lens prescription shows a stable form of KC, as the cone isn't changing shape.

Most soft lenses aren't suitable for keratoconus as they tend to become disctorted by corneal irregularities rather than make them regular. If your KC is milder though they could work. There are also specialist soft lenses for KC, but none multifocal as far as i'm aware. Hopefully someone will be along soon with experience of these lenses.

LASIK isn't recommended for people with KC as it does the exact opposite of what's required to treat KC! that is, it thins the cornea further. LASIK has been known to cause KC in people who haven't previously had it. This is more common when correcting higher minus prescriptions however

[Anne Klepacz]

Hi Johnny and welcome,
It's good to hear from someone who has had 'mild' and 'marginal' KC for decades and hopefully reassuring for those newly diagnosed who think their KC will inevitably progress and cause problems.
But however mild the KC, medical advice is that conventional laser treatment is not an option - it thins the cornea and would only make the KC worse. And any laser clinic would turn away anyone who has even marginal KC.
As for reading glasses, as the decades go by, most people, whether they have KC or not, find they need reading glasses. Just one of the joys of getting older! But it would be interesting to hear from anyone who has tried multi-focal lenses.
There are quite a few people here who wear the new specialist soft lenses for KC and hybrid lenses, so I'll leave them to tell you more.
All the best
Anne

[Lia Williams]

Hi Johnny,

I agree it is a nuisance wearing reading glasses to use the PC and read, especially when different powers are required for reading and the PC. There are multifocal contact lenses for keratoconus (both speciality KC soft lenses and RGPs exist) but I’ve not come across anyone who has tried them. I did once ask an optometrist about multifocal contact lenses and I didn’t really get an answer – but as several attempts have been made to replace my current single vision lenses I guess that answer was ‘don’t even think about it'!

One solution would be to have varifocal glasses to wear over your lenses. You could either have an occupational pair which could be set for intermediate and reading vision, or you could have them set for distance, intermediate and reading. Another solution would be to have your lenses set for mono-vision where one lens is optimised for distance and the other for reading. Or there is modified mono-vision where one eye is optimised for distance and the other for intermediate vision so that reading glasses are only required for close work.

As for comfort a speciality KC soft lens could work. If you read GarethB’s posts you will read that they have given him 6/5 vision for all his waking hours which is much better than he had with RGPs. However as you have worn RGPs for many years there will be some demoulding of the cornea required. This can take several months so often one eye is refitted at a time.

Another way to improve comfort is to piggyback your RGP lenses with soft lens underneath.

If your keratoconus is mild ordinary soft contact lenses could give you some vision if you just wanted a rest from your RGPs. I have some ordinary soft lenses which I wear (under goggles) for swimming. These give me enough vision to easily recognise my family in the pool.

Lia

[GarethB]

Depending on your age and shape of the back of the eye by which I mean from the lens back, you may always have to have additional correction or if you are like my case as you age the lens becomes stffer so additional correction for reading is required.

If you have mild or marginal KC, some of the normal silicon hydrogel soft lenses for high astigmatism can give good vision, my left eye is -4 Diopters and a standard high astigmatism lens could be used. My right eye is over -7 diopters and I get better vision in these than RGP lenses, so if you were to change to a soft lens for KC such as the Kerasoft IC lenses that I use, you may get much improved vision where the use of glasses is much reduced.

As none of us are optoms or have seen your eye under a slitlamp we are unable to say for definite how much of the vision issues you have are down to KC on the cornea (front of the eye) and how much is due to ageing of the lens (a bit further back in the eye).

[JohnnyB]

Hey thanks for taking the time to respond to this.

Think I'll contact my optometrist and find out my diopter and cornea thickness readings, its the engineer in me that still asks the question when ( at what diopter/ cornea thickness) does an astigmatism become KC. Since I see no other means of diagnosis- but I am only an engineer that works in numbers:)

I wasn't really clear in my post that I wasn't contemplating a soft lens only, mainly due to the concerns with the time for the cornea to adjust, more the hybrid lenses that would provide the extra confort and stop dust etc. The SynergEyes brand lenses where what I'd see on the net and specifically the ClearKone, Ultrahealth and the Multifocal- so any advise or experiences with these would be much appreciated. Again multifocal would be my utopia to get rid of the reading glassess- I can never find them when I need them!!!

Yes reading this forum makes me realise how fortunate i've been with my condition that it never relly progressed, I'm 50 this year and was diagnosed when I was in my very early 20's- my only advise is stick with the RGP lenses they do work (well in my case). I had an optometrist that tried everything for comfort from putting holes in the lenses, cutting the tops/bottom off them and slowly by wearing them a small amount each day I eventually got there (without the holes or half moon lenses- think it was more psychological than theory). I now wear them all day from getting up at 5.30AM to 11.00PM and I've have no eye infections or irritations. So don't despair there are some good stories out there its not all gloom

Look forward to some more replies and reading more of the posts in the forum, its been eye opening- pardon the pun!!!

[GarethB]

I'm a few years behind you but as I approach 50 I have already been told that the lens in my eye is getting stiffer and it won't be long before I will need reading glasses on top of the contact lenses.

Astigmatism is measuerred in diopters but if it is in more than one plane, then this suggests KC, what is sometimes refered to as regular astigmatism is only in one plane which can be corrected by glasses.

One thing with KC is that as you get older, the collogen in the cornea generally stiffens, the number of fibers don't increase again, they just become more rigid so KC is less likely to progress.

Corneal thinning is a definite sign of KC and it is this that leads to the warping of the cornea which gives the astigmatism along with other sysmtoms which are only observed under a slit lamp.

[woody123]

Hi
Keratoconus does not mean you cannot have bifocal or varifocal contact lenses. I run a contact lens specialist in Nottingham and has many satisfied keratoconus patients who wear either gas perm bifocals or synereyes duette multifocals. I even have a few wearers who wear monthly varifocal contact lenses with gas perm lenses piggy-backed on top. This gives excellent comfort and good vision.

[JohnnyB]

Hi Woody123

Thanks for the response, thought it must be possible- now to execute.

If I wasn't in Wollongong (near Sydney) Australia I'd be around there tomorrow.

I've forwarded your post, hope you don't mind, to my optometrist and see if he can come up with someone local to assist

[Lia Williams]

Hi Woody,

I'm interested to hear that piggybacking multifocal soft lenses with RGPs does work, it'd be great to see at all distances without wondering where I left my reading glasses!

What surprises me with piggybacking is that my vision is the same whether I piggyback with -1.0, -0.5 or not use the soft lens.

Johnny,

I've also never had a number to define my KC. It's not very mild as local High Street specialists cannot cope with me, but hospitals can. I get good vision with their lenses even if re-fits take ages.

Lia