UK Keratoconus Self-Help and Support Association

Hi there,
I'm writing here again because in Italy I'm not understood and because I think that in the UK soft KC lenses are more known and used. I wrote some posts here about a year ago .. I was searching for a KC contact lens compatible with my lifestyle: I'm a very sportive person, I was training to became a snowboard instructor and I enjoy other boardsports such as surf and windsurf.
Last year I did an unsuccessful try with Kerasoft 2 soft contact lens (got just 5/10 visus while I need 8/10 for being admitted to snowboard instructor courses) and then I gave up and choose the "classical" rgp way with a reverse piggyback system for snowboarding and high impact sport : a RoseK2 rgp used alone normally and with a soft silicone hydrogel lens (ciba air optix) over the rgp for praticing dangerous sports. This solution was quite good but it was limiting: I couldn't do water sports, and I had a maximum wear time limit of about 7/8 hours ... and this is not nice when you go with friends the whole day and mabye after snowboarding you want to stop and take a beer . Also, I often have to go in dusty places for working reasons ... and the standalone rgp is not so confortable in such places.
So I decide to restart looking around for an alternative solution. I did another try with kerasoft (kerasoft 3 this time) with another contact lens praticioner and this time the result was a bit more successful : 6/10 unclean in over-refraction with a neutral lens. For having better result I had to order a lens with my right power but I had to pay for this and both me and the optician wasn't so sure of the final result. So I gave up again. Meanwhile, I became in contact with one more optician specalized in KC and snowboarder as me who easily understood my problem. He was working with a totally custom made soft KC lens handmade in a laboratory in Rome. I sent him my corneal maps and he told me that It was probable to get 7-8/10 on my unlucky eye with his soft lensens. He is not near me .... I live in northen Italy so I took a flight to Rome hoping to forget about RGP .... Well .. the fly was worth having a try !!! Now I have two soft KC custom made lenses , I see about 8/10 with my bad eye (the left one) and 10/10 on the right one ... I'm extremly happy I can snowboard, surf, windsurf, ride a mountain bike and whaterver was forbidden by the RGP.
Everything seems going fine but when I told my own optician (the one who made the rgp and the reverse piggyback system) that I had solved with a soft, he said me that soft lenses could be dangerous and aren't healty for the cornea and to be extremly careful. I know this lens is made in the same material of kerasoft 2 . Is there someone that can tell me if soft lenses can really damage my cornea ??? My ophtalomologist (eye doctor I mean) told there are not particular problems ... the optician who fitted the new lens said I have a good tear film ... I'm just a bit confused ... confused but happy ....
Is there someone using soft lens for KC here ? If so, do you have any particular problem ?

Sorry for the long post and my bad english ... but I'm looking for an international opinion

Thanks,
KIaZ

PS: here : http://img215.imageshack.us/img215/5144/talpaep1.jpg you can find my corneal topography, just to give you an idea of the KC on my bad eye (left - OS in italian) ... I'm also very curious to know if someone "similar" to me is having similar result with kerasoft or other KC soft lenses ....

KIaZ

Thank you for sharing your story with us!

I am afraid that I am not in a position to comment on soft lenses. I did try prior to my first graft, but the time I got round to trying soft lenses my eyes had become intolerant of any sort of lens. Still I am now in the process of looking for a lens to fit over my left eye (DALK) graft. I'll let you know how that goes.

All the best.

Andrew

Hi Kiaz,

I am a consultant for the company that makes KeraSoft3 and 2, so I can answer your questions. Soft lenses for keratoconus have always been seen as a "problem" by some practitioners because they have to be made thicker than normal lenses. This can mean that not enough oxygen gets through to your eye which can be bad for some people. However, this has to be looked at for each person - some will manage perfectly fine and some may not.

The new KeraSoft3 lens is made from a completely different material (Silicone hydrogel) than KeraSoft 2 and lets through a lot more oxygen and is therefore a healthier option. If your current lenses are made from the same material as KeraSoft2, this may be why you have been told there could be a "problem". However, if you are wearing all day without any signs of oxygen lack, (and your optician should be able to tell you if this is OK or not) then you should be fine.

What is the new lens called? I might be able to tell you more if I know what it is you are wearing!

Hi Lynn thanks for answering .
The lens I'm wearing is this one and it's handmade in a laboratory in Rome :
http://www.contactflex.it/id_scheda_lente.asp?id=15 ... there's no translation in english but however I can try to translate if you want more details (it's not so easy because it's quite technical) but in short :

Material/Water Content: Hioxifilcon B. 49-50% water
BC : from 7.40 to 8.20
Power : (+/- 20.00 D)
Dia : 14.50
*also toric max cyl +/- 2.00 Dt.

If I'm reminding well the material is the same of kerasoft 2. I had a try with kerasoft 3 (I was hoping in it because it's si-hy) but it' seems there's no way (or no optician ...) to fit them on me with successful result. Also, in italy kerasoft means waiting a month to have a lens meanwhile I had my lenses in a week's time (also the right lens had wrong axis and they sent me the new lens in 2 days time ..) Regarding my tolerance to the material for now everything seems OK (no red eye) after 14 hours of wear but I'm waiting to go back in Rome and see the optician ... the only matter is that here I've been left alone, no one obivousuly wants to deal with another one's work and a unknown lens. I hope everything will go fine and not to have troubles ... I'm really happy to see with two soft lenses ... no one can understand me ...

Hi Kiaz

Its OK , I have google translation at hand! It looks very much like the Soflex lens, except that one has a higher water content.

The thing that worries me is the fact you can't get anyone to check you in case you do have problems. Sometimes, you can have problems with lack of oxygen but still have clear eyes and no discomfort. Lack of oxygen can cause the eye to become numb, so you don't feel any pain and the eye can still be white, with no redness. However, an optometrist could see the problem on their instruments straight away.

All I can say is do try again to find someone to do aftercare for you!

I hope to find someone here able to check out if there's something wrong .. do you think that an eye doctor could be able ?
Here optometrists are tipically lens-sellers, so theyr primary interest is to sell lenses, and often they do anything possibile to demostrate their lenses are better than the ones you are wearing made by another one .. So it's difficult to trust someone except you find a friend person ... I had a friend optician, but he's not expert on keratoconus ... It's not so easy.
However I will have soon an examination wiht my eye docotr and I'll ask him if he can also check my new lens .

Thanks a lot for now.

Hi Kiaz & Lynn,

Read this post with interest as I'm also a keen snowboarder and have been trying to find a pair of soft lenses that allow me to enjoy the sport, aswell as for squash and mountain biking. I work stupid hours in front of a computer so grab every opportunity to get into the Great Outdoors.

Kiaz, I know what you mean about having contacts in all day and grabbing a beer! - By 4pm my eyes are usually screaming out for me to remove the lenses. I often have to stop half way down a mountain to re-seat the RGP lens in my left eye and apply drops. I also find it real difficult to focus when boarding between shadows - especially during early Winter when the sun is low in the sky.

Although I've tried kerasoft 2 lenses for the last year. I could never get a suitable fit for my left eye as it kept dropping between blinks resulting in an unsettling shimmer affect, so I now wear an RGP - although I don't bother when playing sport.

I've got a Kerasoft to fit my right eye, the worst affected by KC, but the vision is a bit random. Sometimes I can see down to the red line on the chart, other times only the line above it. Plus, as the lens mould to the eye, the halo effect of the KC comes back resulting in a fairly strong blur. I'm now booked in to try a new RGP lens for the right.

I think I'm really going to miss the comfort and practicality of Kerasoft Lenses.

Lynn, do you know if the latest Kerasoft3 lenses would offer any improvements in fitting over a Kerasoft2? - or are the improvements purely in the oxygen levels? It would be great if I could get a soft lens to fit my left eye, which is far less KC than my right. I can get decent vision through my left wearing specs and play some sports without the RGP in.

Plus, do you know if the eye-clinic at St James Hospital in Leeds is aware on the new Kerasoft3's - I had an appointment a few weeks ago and whilst I was aware of the new version I did not raise this as I assumed they would have suggested it, if it was indeed available.

Any help greatly appreciated as I'll make the most of my next appointment.

Kiaz, I know what you mean about having contacts in all day and grabbing a beer! - By 4pm my eyes are usually screaming out for me to remove the lenses. I often have to stop half way down a mountain to re-seat the RGP lens in my left eye and apply drops. I also find it real difficult to focus when boarding between shadows - especially during early Winter when the sun is low in the sky.

Hi Rich ... I have too some problems when riding in low light or when passing from light to shadow ...
I haven't already tested bad light conditions with this new contacts but the snow season is over and I think I'll test it riding my mountain bike .... However for me now everything seems to be ok, except finding an optician here ....
What I can tell you about kerasoft 2 and 3 it's that I had two tries and never managed to fit my bad eye ... but it's a vision problem (I think my cone on left eye is too bad for kerasoft) ...
For now I'm happy .... I hope you manage to find a solution to snowboard without too many problems too !

bye
KiaZ

Rich,

The new K3 version is a redesign as well as better material. And yes,St James has a fitting set. The new lens is a "softer" material so if you do find considerable moulding after time, it might be best to wear the lens for a an hour or two before you have the over refraction sorted, if that is possible. On the other hand,that may just be a fitting issue. Hard to tell without seeing you!

Thanks Lynn. I'll mention this to them during my next visit. Annoyingly I'm off back to try a hard lens in the right as a replacement to my current Kerasoft2 so hopefully they won't mind me asking about trying the Kerasoft 3's. The most I've had the lenses in before going back in for the refraction fitting is about 30 mins. So maybe this is where we're going wrong.

Out of interest roughly how much would I need to spend if I purchased Kerasoft lenses from a high-street optician? Assuming i could get these lenses privately? Could I ask them for a trial fitting on the off chance it works for my left without hitting my wallet to hard?

I currently go through the NHS system which works out about £100 per year, but for the last 4 or so years I've never had a pair of contacts that I can truly wear on a day to day basis. So looking back now I guess it's been a waste of money.

The problem I'm having is the system is just so slow. It typically takes about 6 weeks to see them about a new lens, have it made up and then go back in to have it fitted. When a lens does not fit I then have to repeat the whole process.

At the end of it I'm left with a RGP lens in my left that offers good vision, short wear time and is no good for sport and a soft Kerasoft2 lens in my right that offers great comfort but below parr vision so cant really get away with it for reading etc.

As we all know KC requires compromise in so many aspects of our lives but I guess we're all striving for decent vision. As a web/graphic designer my livelihood relies on being able to see so I'm unashamed to keep pushing the NHS system to reach the goal.