UK Keratoconus Self-Help and Support Association

Hello there! Yikes, it's been over 9 here since I joined here - but I haven't posted in years!

I am really just looking for some advice, or any crazy ideas. So, around 9 years ago I had crosslinking done in my left eye under the impressionthat it would stop the progression of Keratoconus, make it possible to wear soft contacts and let me move on with my life. Unfortunately, it's turned into a mistake and a choice I wish I'd never taken.

Crosslinking did stop the condition progressing, and in fact over the last 9 I've been very lucky in that the condition has actually regressed to some degree as my cornea has flattened. At this point you are probably thinking - so what's the problem? Well unfortunately the cross linking left a tiny scar across the middle of the cornea that's made it impossible to get contacts, after around 8 years of trying. Soft, rigid, a cocktail of both - nope. Owing to the extremely annoying location of the scar, smack bang in the centre of my cornea it makes any attempt to correct vision with lenses near impossible.

It's a nightmare because me left eye is super blurry and wonky, which affects my every day vision when my brain tries to merge the images of both eyes together. My right eye has carried me this far but it's so overworked that I have permanent eye strain in it that makes even just waking up a hellscape of it's own. On the one hand it's saved me a corneal transplant, but on the other what was the point if I still can't see out of the eye?

What I am wondering is what do I do next? My eye care provider (ironically where I work!) just shrug their shoulders and say there's nothing else that can be done. But there has to be some option somewhere? I appreciate people have things far worse than me, and some people may just think I am being petty, but for the last 9 years I've suffered severe anxiety and depression about vision loss and it's hitting that point where I just want to give up. Nearly a decade of my life has been lost to trying to sort this out and it's hitting the tipping point with the depression.

There has to be some option out there to tackle this scar? Or contact lens that can work round it? Anything? I just need some hope.

Thanks for your time

Liam

Hi Liam,
Just a few thoughts - were scleral lenses ever tried for you? They're the big ones that don't actually touch the cornea because they sit on the white of the eye. Not all hospital contact lens departments have them so if you haven't tried them, you might need to get a referral to a different hospital that does offer them. You say your left eye is blurry and wonky and interferes with what you see out of the other eye. Is it possible to fit that eye with a contact lens or have you been through all that?
Corneal scars can sometimes be removed by laser - not an option for someone with KC but is it possible for someone who has had CXL and so has a thicker cornea? I've no idea, but is it something that was ever mentioned as an option?
And if none of that would help, then there is always the option of a corneal graft. I appreciate it's something you wanted to avoid, but as someone who has had transplants in both eyes, I can vouch for the fact that there is life after a graft.
Of course, I'm no medic, and there may be other options these days. Have you thought of asking for a second opinion at a different hospital? That's something you could ask your GP to arrange. I do hope you find something to help - it's been a long, frustrating time for you.

Anne Klepacz wrote:Hi Liam,
Just a few thoughts - were scleral lenses ever tried for you? They're the big ones that don't actually touch the cornea because they sit on the white of the eye. Not all hospital contact lens departments have them so if you haven't tried them, you might need to get a referral to a different hospital that does offer them. You say your left eye is blurry and wonky and interferes with what you see out of the other eye. Is it possible to fit that eye with a contact lens or have you been through all that?
Corneal scars can sometimes be removed by laser - not an option for someone with KC but is it possible for someone who has had CXL and so has a thicker cornea? I've no idea, but is it something that was ever mentioned as an option?
And if none of that would help, then there is always the option of a corneal graft. I appreciate it's something you wanted to avoid, but as someone who has had transplants in both eyes, I can vouch for the fact that there is life after a graft.
Of course, I'm no medic, and there may be other options these days. Have you thought of asking for a second opinion at a different hospital? That's something you could ask your GP to arrange. I do hope you find something to help - it's been a long, frustrating time for you.

Hi Anne, thanks for replying!

I've been through the contact lens system at my local hospital for around 8 years and have not been able to get a contact lens. I've not tried a scleral lens, but the eye dept I attend said it's purely a choice between RGP's or soft leneses. Neither of which work. In terms of my right eye (it doesn't have KC) I have asked about a contact lens but my vision is apparently too good out of it. So even though it's constantly under intense strain from overworking there's nothing that can be done.

Laser has come up but I've always been told that it's not something a KC patient could have. As a result of this I did some googling and saw Moorfields do private PRK for post CXL KC patients so I contacted them and am going to have a consulation when things open up again. However, I suspect I am not going to be a candidate as I seem to remember after having CXL 9 years ago the consultant who performed it said that my eye was just fractionally too shallow for implantable contact leneses, so I imagine that would also mean PRK is non starter.

At this point a graft is probably the only option but the eye dept I am under said that's a no go because the condition hasn't progressed since I had the CXL done.

Thanks so much for responding, it means a lot as this whole things makes you feel incredibly alone.

Hi Liam,
It's good that you have a consultation lined up at Moorfields and I hope you don't have to wait too long for it, though I guess they're going to have quite a backlog to catch up with. The criteria for an implantable lens won't be the same as for PRK so don't assume it's a no. And do ask about scleral lenses too - Moorfields are real specialists in fitting these so it might be an option for you.
All the best, and do let us know how you get on.

Anne Klepacz wrote:Hi Liam,
It's good that you have a consultation lined up at Moorfields and I hope you don't have to wait too long for it, though I guess they're going to have quite a backlog to catch up with. The criteria for an implantable lens won't be the same as for PRK so don't assume it's a no. And do ask about scleral lenses too - Moorfields are real specialists in fitting these so it might be an option for you.
All the best, and do let us know how you get on.

Thank you so much, Anne.

Sorry it’s taken so long to respond. I’ve been going through a very dark depression with all of this. It turns out I do have KC in my right eye now which is why it’s starting to give out. After all the problems I’ve had with the hospital, i’ve switched from the hospital to a local specialist who had been fantastic and am going to attempt being fitted for hybrid lenses. I’ve had so many years (9!) of failing with lenses that I’d just given up but the new optician I saw was so positive that it’s really helped pull me up a bit.

My appointment with Moorfields was via private and I’ve decided to hold off until I see how the contact lens fitting goes. If we struggle then I’ll look into it.

I didn’t know that about inserts. This was 9 years ago when I was told my eye was not suitable for implantable contact lenses after cross linking. The frustrating thing about that was I never asked about it. They offered it to me after cross linking and then said I couldn’t have it.

Could I just ask, do we know of anywhere in the uk offering epi on cxl? After epi off cxl leaving a scar in the centre of my left eye, I can’t face the risk again with my only useful eye.

Fingers crossed for your contact lens fitting! Let us know how it goes.
As for epi on CXL, although there has been at least one clinical trial in the UK comparing epi on and epi off, I don't know of anywhere currently offering epi on. If you do end up going to your private Moorfields appointment, you could ask then whether there are any other clinical trials coming up. They were hoping to do one some years ago now, but didn't get the funding for it.

Anne Klepacz wrote:Fingers crossed for your contact lens fitting! Let us know how it goes.
As for epi on CXL, although there has been at least one clinical trial in the UK comparing epi on and epi off, I don't know of anywhere currently offering epi on. If you do end up going to your private Moorfields appointment, you could ask then whether there are any other clinical trials coming up. They were hoping to do one some years ago now, but didn't get the funding for it.

Fantastic, thanks for the info. I really appreciate you taking the time to reply.

The contact lens fitting went well, but I had forgotten how uncomforatable hybrid lenses are at first. I am really grateful to have found a fantastic Opticians in Brookes and Wardman, as the eye guy there is fantastic amd has been gracious enough to put up with me bombarding him with questions. Unfortunately due to Covid, getting the lenses is being slowed down, so whilst I had the test fit two weeks ago it's still a case of just being patient waiting for the final ones (hopefully) to arrive. I am still worried about ghosting as I think that's going to be a real battle to correct but fingers are crossed.

I have been diagnosed with having something called "persisten migraine aura" which also helps explain why my sight has got really weird since April. I'll be starting treatment for that next week, so hopefully the lenses will arrive then too and I can start to reclaim my life. As dramatic as that sounds!

It's strange because it's been 9 years since I was diagnosed with Keratoconus, and then had crosslinking, but it's only now that I realise how much stuff I've avoided or put off due to the effects of ghosting and the likes. This has to be the year I move on from all of that.

If you're seeing the main guy at your opticians then he used to reply to people's questions on this forum when the forum was quite new so I'm not surprised you're so happy with him. I hope you don't have to wait too long for the lenses. And that your migraine aura can be treated successfully. I can't imagine what persistent aura must be like - it's unsettling enough when it lasts 20 minutes a few times a year!
All the best with reclaiming your life - I can still remember how good it felt to get my life back after having corneal grafts years ago. The psychological effects of KC tend to be underestimated, but the limitations on sight can knock people's confidence and self-esteem quite badly.

Anne Klepacz wrote:If you're seeing the main guy at your opticians then he used to reply to people's questions on this forum when the forum was quite new so I'm not surprised you're so happy with him. I hope you don't have to wait too long for the lenses. And that your migraine aura can be treated successfully. I can't imagine what persistent aura must be like - it's unsettling enough when it lasts 20 minutes a few times a year!
All the best with reclaiming your life - I can still remember how good it felt to get my life back after having corneal grafts years ago. The psychological effects of KC tend to be underestimated, but the limitations on sight can knock people's confidence and self-esteem quite badly.

Hi Anne, thank you for replying and sorry it took so long to respond - it's been a mad for months.

Yep, David has been fantastic. By far the best optician I've seen and he made me feel so much better straight away.

So, the migraine aura is still going sadly. Courses of Amitriptyline and Nortriptyline only seem to have made it worse. Tinnitus made itself known after a dosage increase and the flickery stuff has just got even more frustrating. However, it all seems to trace back to the anxiety and stress from my vision problems so, there is light at the end of tunnel. Because, I'd like to thank you as I took your advice and looked into options and was amazed at how things have changed over the last 9 years. My fantastic optician mentioned having the crosslinking scar lasered off and it was like a door opened. For years I've been told by the NHS that nothing can be done, but that's not true. So I booked that appointment at Moorefields and went at the start of this month. A week tomorrow I will be having PRK to help with the scar on my left eye, plus PRK and crosslinking on my right eye. The aim to stabilise my eyes, and make them smoother to hopefully make glasses and contact lenses much easier to sort. Also, there is a strong chance it will fix the recurrent corneal erosion that's plagued my good eye. It's scary, because of the potential for it to also make things worse and lead to needing a graft - but it's worth the risk.

You are absolutely right that the psychological effects of KC are really underestimated. It wasn't until this happened that I realised that for the last 9 years I've been living in a permanent state of intense anxiety. It's what's bought about the migraines and it's had a huge effect on everything. For those 9 years I've been to the hospital annually, opticians and specialist contact lens fitters with no success and it's built up such anxiety, as ghosting, glare etc having got worse and I've had zero luck in making things better. So in essence that 2 week period in April which started all of this off, when the RCE happened each day and my anxiety levels just boiled over has actually turned out to be a positive. It may have been the worst few months of my life, but it's pushed me to something I didn't even realise was possible because the usual advice around Keratoconus has been "just keep trying contact lenses" which has come from the hospital and many of the opticians I've seen over 9 years, pushing me into this wretched spiral of feeling trapped and hopeless. But, from reposting on here it lead me to a far better optician who pushed me in the right direction, as well as your post about the variety of options. You actually made things not seem hopeless. That sudden discovery that there were other options has really turned things around.

Also, even though the financial hit is going to be huge, my girlfriend put a message on Facebook about it and so many family and friends have donated what's turned into a big sum of money. It's blown me away. I don't tell people about my KC because even after 9 years it's still like if I don't say the word out loud then it's not real. Plus I like to keep things private, with the downside that I've just dealt with it almost entirely by myself. Suddenly people know and care which is just amazing. My gf is amazing, though she now has to go through October sober as per the rules of her sponsorship hahaha.

So, I am sorry for the really long ramble - but I really just wanted to thank you. You gave me that ray of hope and it's actually completely changed the direction things were going for me. I cannot convey enough the difference it has already made and potentially could make if things go well. Thank you so, so much for doing that.

I'm so glad things are looking much more positive for you. And I'm sure everyone will be rooting for you next week for the procedures to go well. Do let us know how it all goes.