UK Keratoconus Self-Help and Support Association

Need some advice, or maybe I just need to air my thoughts...
I have advanced and agressive KC in both my eyes. Currently 34 years old, already had one DLK on my left eye and now being told I need to consider a DLK on my right eye.
I had a DLK on my left eye about 6 years ago now. Prior to the graft my vision was -27 and the cornea was in danger of developing hydrops. I had significant scarring and was warned that I would not have clear vision after the graft but in all likelihood I would be able to see with glasses or lenses. For the last six years I have only been using glasses, although I do not get good vision with the post graft eye. Certaintly better than it was pre-graft but nowhere near being able to drive or read comfortable with. I have double vision and the residual scarring means that there are sort of "dead" spots. Recently, my optician tried to fit a Rose K post graft lens as well as another type of post graft lens. Unfortunately, the lens refuses to stay on the eye. The reason, when the sutures were removed a bit of the cornea lifted and there is a bump just above my bottom lid.
At about the same time as I was going through all of this my allergies came back with a vengence, I developed eczema on my eyelids and my right eye (no graft, RGP Rose K lens) started to get really irritated. My eyes are also incredibly try (have had plugs put in numerous times). I was prescribed a cocktail of opticrom and antihistimines, dry eye drops and antibiotics but nothing really helped. My lens was refitted and while wearing my new lens I had an abrasion on my right eye, on top of an old scarring.
So I went to see the surgeon that operated on my left eye, six years ago. He confirmed the abrasion and also that my cornea is now thinning and that I have developed striae in my right eye. He is suggesting I consider a DLK in the right eye before hydrops or some other complication. My right eye is currently -26. He says I have a very agressive form of KC.
My worry is that I still cannot see properly with my left eye and as I am a solicitor I am constantly reading contracts and other documents. My surgeon has suggested that I go for LASEK, LASIK or PRK as I now have a really thick cornea in the left eye and he believes that it is my best chance of success. He has referred me to a specialist in the field, of course it is very expense.
So, any thoughts on what I should do???

I don't think many here have had much experience of those techneques but I am happy to be prooved wrong.

In the first instance ther is nothing wrong in seeing a consultant about all these techneques, that way you can make an informed choice regarding what is best for you.

Another option worth exploring is the Kerasoft K3 lens, it is a soft silicone hydrogel soft lens and the recent test fitting we got 6/5 in both eyes. Mine are 20 yeasr post graft but I have KC in the host cornea of the right eye causing a distortion. The manufacturers have over come the problem I had with double vison when we first started experimenting with these 12 months ago when the lens design was still on the drwring board so to speak.

There is also a Scleral lens that might help but I don't know much about them.

My personal preferance is always to go the non-surgical route first.

Hope this helps.

Gareth

Welcome to the forum!

If your corneas were as deeply scarred, did they explain why they offered a DLK graft rather than PK? M y own right eye has a PK graft and my left eye DLK.

I do know someone who had LASIK (actually also a solicitor) after a graft. he also wears post-graft lenses (I think he piggy-backs).

All the best.

Andrew

I found that the Kerasoft 3 produced more night time glare and didn't correct more often, my specialist said that those was a common problem with the kerasoft 3 which does not get mentioned in their web site. Was your story on their web site in that you was a "success" story, and your still trying them ??

Hi.
A few thoughts.
First, it is possible to survive a hydrops. I've survived 4 so far....
They are a nuisance, but not the end of the world. Nor do they necessarily mean an immediate (full thickness) graft.
Second, it is possible to survive a full thickness or PK graft. Or so I've heard.....
Third, definitely inquire about sclerals, if you haven't already.
The great advantage of these is that, being big (c24mm - yeah, everyone has a fit when we firt see them!) and fitting so the rest on the outer white areas of the eye, they are clear of the centre of the eye, with a layer of tears trapped between lens and eye, and the lens not actually touching the eye in the centre area.
This means they can cope with a lot of irregularity, lumps, bumps, ridges, etc left bythe "join" from grafts - the lens arches clear of all that stuff, and the layer of tears of course can change itss shape to fit all the bumps and rough edges, no problem.
SOme of "the pros", alas, think of them as old-fashioned or old hat - but for thiings like fitting right over an irregular graft join they can be just the job.
Rosemary

Pepepepe

Don't think I am on their web site as I've only had a success in respect of comfort but not long term stable vision. I am working with the manufacturere and they have recently been visiting countries with higher cases of KC so I hope to soon be trying a modified lens, a K3 1/2 if you like which might kerb the issues we have encountered.

A problem the manufacturer has is getting feedback from the optoms who try the lenses which is why I am working directly with them and their optom.

I get glare from my RGP as the lens has to sit off centre due to where the KC is very nasely rather than hamnging down like normal KC so in low light I see the edge of the lens.

I keep saying "its all for the better" and it is - I hope you a quicker success, a success which you surely will get, please also explore other contacts, as you never know you may have more than one contact lens option - i am pretty sure there are various contact lenses still to try and enjoy (Soclear/Macros, the Jupiter lens, Synergey Eyes, other softs etc... just thinking out loud on some lenses mentioned to me in conversation by specialists)

Sorry GM Jones, I over looked your situation there, you wanted some feedback from others.

I would say, get your "good" eye corrected with contacts so your not struggling in that eye - before venturing in to any corrective surgery on the other. It may take time for you to get a contact lens you are happy with, either due to appointment times, or trying to get a decent fit. Get you GP to refer you to a consultant at a hospital with a contact lens clinic or go privately to a place with contact lens for KC experience (more than one type of KC contact lens experience would be the best, that way you will get more of an independent and unbiased advice). You must exhaust this avenue, because you may not get the chance to at a later date, as you are now, if side effects of the laser kicks in to your situation too.

sorry; have I missed something? Surely you need to see an eye consultant to have a diagnosis of keratoconus? Doesn't that mean you are already registered at a hospital clinic?