Hi, New member, after a bit of advice!

[winko]

Hi all, first of what a helpful place this is!

I was diagnosed with KC from age 16. They first gave me what must of been RGP's, really hard lenses, which although my sight was excellent with them in, my eyes could not get used to them. I could barely open my eyes, especially in sunlight, it looked like I never got any sleep! Next up I was given what must of been Kerasoft (I am useless with remembering what Ive been given!) They were soft around the edge and hard in the middle with a blue tint. Again, perfect vision but my eyes still could not get used to them.

I am now 23 and on my third type of lens, 100% soft lens but not really "squishy" soft, Im finding they arent offering as good vision as the harder lenses. My vision has not got any worse over the years though, to be honest most of the time I can cope without lenses except for long distant driving although I have to take them out when driving at night as it is just downright dangerous. My eyes can just about get used to them but I still get a lot of redness and dryness.

I use Sauflon "All in one Light" solution, preservative free Saline and Hayabak preservative free eye drops and Im still finiding lens wear difficult. Is there any hope? My optician said if I cannot get used to them then we could try sclerals but im not the most confident user at putting them in and taking out. It really frustrates me that the NHS arent offering CXL to patients so they dont progress further, although I understand that people who have it worse than me are a priority. Whenever I mention it to the hospital they just act as if they have no idea, the NHS are really not that great when it comes to contact lenses.

A few questions, does it seem my eyes arent built for lenses? My optician worried me by saying that Im doing more harm by not wearing lenses often enough, and that one day I would need a blind dog to do anything....

Is it worth going private for CXL? Im not sure if I would meet the requirements as my KC is not that advanced as some people, but that could change, who knows.

[Anne Klepacz]

Hello Winko and welcome to the forum,
Some people do find it harder to find a contact lens they can get on with than others. Sounds like it's Kerasoft you have now (the second type you mention are called hybrid lenses). Have you tried any of the various wetting drops you can use to help with the dryness? Worth trying before you decide whether you can get used to your current lenses. And as well as scleral lenses which cover the whole eye, there are now semi scleral and mini scleral lenses which work well for some people.
As for crosslinking, if your vision hasn't been changing, then you'd probably not be eligible for this on the NHS. Hospitals which offer CXL on the NHS need evidence of progression of KC over a 6 mth period. There's currently only a few hospitals which do crosslinking on the NHS, but NICE has recently approved CXL so that will hopefully change. But of course, crosslinking isn't necessarily a way out of contact lenses - it's aim is to stop progression and while it can sometimes improve the vision, most people do still need contact lenses after CXL.
If you'd like more detailed info about the variety of lenses available and other information we produce, do e-mail or PM your postal address to anne@keratoconus-group.org.uk and I'll send it to you.
All the best
Anne

[winko]

Thanks Anne for your advice. I am currently trialling eye drops, using HAYABAK at the minute. I am thinking of contacting either Moorfields or a private clinic about a CXL consulation. I dread the day when I am unable to wear soft lenses and due to not being able to tolerate hard lenses, the only option would be surgery.

From your experience, will it be worth me going the private CXL route? As my KC is not that advanced at the minute.

[Anne Klepacz]

Crosslinking hadn't been invented when I needed grafts, so I don't have any experience of it. But quite a few people who post here who have, so hopefully some of them will reply. And if you put 'crosslinking' or 'CXL' into the search on this forum, you'll find CXL experiences.
Anne

[andytraill]

Hi winko!

On the soft lenses have you tried switching for another half way through the day to see if that helps? For dryness it can help a bit mainly because the "new" lens is wetter. Also you might want to discuss piggybacking (soft lens with a hard on top) with your consultant (though not all do it I think, and for example I had problems for full day wear which were similar to what you said about the softish lenses). Also are both of your eyes as bad as each other?

I'm not sure what you optician meant by the comment about harming your eyes by not wearing lenses, though it didn't sound helpful!!!

Another point on the CXL if your eyes aren't getting worse, the risk involved in getting it done isn't 0. So while in the case that it has been proven that changes are happening the balance of risk errs towards getting CXL in the case where there is no progression then it might be less valid. Though I wouldn't be surprised if some of the private clinics would be more than willing to CXL you so it might be best to get an objective opinion from a NHS consultant really I suppose. Also in some cases they can do a form of laser correction (mainly to regularise the cornea, not necessarily correct short/long sightness) then CXL (or the other way round). With the aim that after though you might still need correction it might be ok with glasses or soft lenses rather than struggling with hard or hybrid lenses.

Cheers,
Andrew

[winko]

Hi winko!

On the soft lenses have you tried switching for another half way through the day to see if that helps? For dryness it can help a bit mainly because the "new" lens is wetter. Also you might want to discuss piggybacking (soft lens with a hard on top) with your consultant (though not all do it I think, and for example I had problems for full day wear which were similar to what you said about the softish lenses). Also are both of your eyes as bad as each other?

I'm not sure what you optician meant by the comment about harming your eyes by not wearing lenses, though it didn't sound helpful!!!

Another point on the CXL if your eyes aren't getting worse, the risk involved in getting it done isn't 0. So while in the case that it has been proven that changes are happening the balance of risk errs towards getting CXL in the case where there is no progression then it might be less valid. Though I wouldn't be surprised if some of the private clinics would be more than willing to CXL you so it might be best to get an objective opinion from a NHS consultant really I suppose. Also in some cases they can do a form of laser correction (mainly to regularise the cornea, not necessarily correct short/long sightness) then CXL (or the other way round). With the aim that after though you might still need correction it might be ok with glasses or soft lenses rather than struggling with hard or hybrid lenses.

Cheers,
Andrew

Thanks Andrew for your advice. I find even these soft lenses uncomfortable so im not too keen on piggybacking, unless my vision deteriorates soon. Scleral lenses are my next option although im trying to hold out on soft lenses for now. I am finding the Hyabak eye drops do a good job, although they only last around an hour. My right eye is worse than my left, luckily the vision in my left isnt too bad so I can manage without lenses when im not driving.

Yes he did scare me a bit about saying that if I dont wear them, it will get worse. Surely poking my eye everyday and sticking in a bit of plastic will do more damage! Im not too worried about that though as lots of people wear contacts for KC.

After writing my original post I did a bit more research into CXL and I now understand there are risks in the procedure, but I really dread the day when or if I will have no choice to wear hard lenses or get surgery. I'm hoping there is more advances in other options like Stem Cell by the time that happens! If I have to wear glasses after treatment then I am totally fine with that, its just like I said, the thought that it could get worse suddenly and there is not much I could do about it scares me the most! So I am motivated to act now before its too late.

Thanks, Tom