I'm getting more and more concerned about the ghosting that I'm still experiencing 16 months after having CXL and PRK at Moorfields and wondered what others experiences are, does it ever get better?
I was diagnosed with Keratoconus in Nov 2016, it had developed for a couple of years but I didn't realise as I wasn't going for eye tests. I went to Moorfields in Jan 17 and they put me forward for CXL which I had in Mar 17.
When I first went to Moorfields I was given a hard lens for my right eye as it was by far the worst affected but the vision in my left eye was ok and i was advised I didn't need a lens for that.
Following the surgery my vision was very bad (to be expected I think) but it's just never recovered to anywhere near what it was, in either eye. I'm now far more short sighted than I was and the worst part is the ghosting.
I had slight ghosting at night with lights before the surgery but now it's horrible, writing this now with my lenses in i can see ghost letters, when I read a book I see ghost letters, I have given up reading the descriptions in museums and art galleries due to the ghosting, when I go out with friends at night it's often not pleasant because of all the light halos, and while right now I don't have to drive, I'm worried about how safe I will be when I do.
In short I am finding it to be limiting what I can do, what I want to do, has taken away my confidence, it makes every day frustrating as hell and I find myself getting angry about it.
Last time I spoke to someone in Moorfields at my annual review I didn't feel they were that bothered by it as my scans showed some improvements - I feel now that I didn't question them hard enough about why my corneas have improved but my ghosting hasn't, and my next appointment to go back is in 2019. I'm also currently living in Spain so I can't just drop by one of the clinics either.
So I don't really know what, if anything I can do. I've spoken to an optician here in Spain and now I've got much better lenses than anything I had in the UK at least but the ghosting remains and they said there is nothing they can do.
Any advice or experience anyone can share that may help?
Ghosting - does it ever get better?
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- Lia Williams
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Re: Ghosting - does it ever get better?
Hi Paul,
I've not had CXL or PRK but I have been troubled by ghosting. It is so annoying to see ghost letters when you are trying to read detailed stuff.
For years ghosting remained when my right eye was corrected with contact lenses. I could read the 6/6 line easily but there was still ghosting so out in the real world it didn't seem as if I had 6/6 vision in my right eye. That said with two eyes together I really didn't notice the ghosting so in spite of my frequent requests for a different right lens nothing was done. However when I had a refit eight years ago the lens the new lens did remove the ghosting. So for me a different lens did help.
There are so many different criteria that need to be considered by the optometrist when choosing a lens for a keratoconic eye. For us the patient we are want comfortable lenses, optimised vision and all day wear. We tend to forget that the lens also needs to be a healthy fit, and maintain a good supply of oxygen to the eye so that blood vessels don't grow into the cornea which could affect a graft if we were to need one in the future. So the chosen lens is usually a compromise.
Are you seeing an optician who specialises in fitting complex cases? If you are then they are likely to have a large range of contact lenses to have chosen from and you may have the best compromise. If not they may know someone who has a larger range of lenses which may work.
Or when you have your next hospital appointment do explain the problems you are having and ask if they can refer you to someone.
Lia
I've not had CXL or PRK but I have been troubled by ghosting. It is so annoying to see ghost letters when you are trying to read detailed stuff.
For years ghosting remained when my right eye was corrected with contact lenses. I could read the 6/6 line easily but there was still ghosting so out in the real world it didn't seem as if I had 6/6 vision in my right eye. That said with two eyes together I really didn't notice the ghosting so in spite of my frequent requests for a different right lens nothing was done. However when I had a refit eight years ago the lens the new lens did remove the ghosting. So for me a different lens did help.
There are so many different criteria that need to be considered by the optometrist when choosing a lens for a keratoconic eye. For us the patient we are want comfortable lenses, optimised vision and all day wear. We tend to forget that the lens also needs to be a healthy fit, and maintain a good supply of oxygen to the eye so that blood vessels don't grow into the cornea which could affect a graft if we were to need one in the future. So the chosen lens is usually a compromise.
Are you seeing an optician who specialises in fitting complex cases? If you are then they are likely to have a large range of contact lenses to have chosen from and you may have the best compromise. If not they may know someone who has a larger range of lenses which may work.
Or when you have your next hospital appointment do explain the problems you are having and ask if they can refer you to someone.
Lia
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- Keratoconus: Yes, I have KC
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Re: Ghosting - does it ever get better?
Hi Lia, thank you for your response.
I will try and speak with my optician again to see what is available as I believe she is used to complex cases. The last time we spoke we did discuss the ghosting and the fact that it only really happens in low light situations makes it difficult. I have found thought that wearing glasses gives me less ghosting at night, maybe that's the best option for me?
From everything I have read it seems as though RGP lenses should always give me the best vision, is it at all possible that glasses could instead?
I will certainly raise it with Moorfields when I see them again!
I will try and speak with my optician again to see what is available as I believe she is used to complex cases. The last time we spoke we did discuss the ghosting and the fact that it only really happens in low light situations makes it difficult. I have found thought that wearing glasses gives me less ghosting at night, maybe that's the best option for me?
From everything I have read it seems as though RGP lenses should always give me the best vision, is it at all possible that glasses could instead?
I will certainly raise it with Moorfields when I see them again!
- Lia Williams
- Moderator
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- Joined: Thu 16 Feb 2006 5:27 pm
- Location: Surrey
Re: Ghosting - does it ever get better?
Paul_M9 wrote:I have found thought that wearing glasses gives me less ghosting at night, maybe that's the best option for me?
From everything I have read it seems as though RGP lenses should always give me the best vision, is it at all possible that glasses could instead?
I don't know why your glasses are giving you less ghosting at night than your contact lenses do. The only thing I can think of is that at night when your pupils are bigger the optical area of your contact lenses isn't big enough and therefore you have more ghosting than in daylight and that's why your glasses work better at night. But I'm not an optometrist so this is only a guess.
Yes you are correct that usually RGP lenses do give much better vision than glasses do, this is because glasses can't correct the irregular astigmatism that keratoconic corneas have.
Lia
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- Contributor
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- Joined: Fri 12 Jan 2018 7:34 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: Ghosting - does it ever get better?
Lia Williams wrote:Paul_M9 wrote:I have found thought that wearing glasses gives me less ghosting at night, maybe that's the best option for me?
From everything I have read it seems as though RGP lenses should always give me the best vision, is it at all possible that glasses could instead?
I don't know why your glasses are giving you less ghosting at night than your contact lenses do. The only thing I can think of is that at night when your pupils are bigger the optical area of your contact lenses isn't big enough and therefore you have more ghosting than in daylight and that's why your glasses work better at night. But I'm not an optometrist so this is only a guess.
Yes you are correct that usually RGP lenses do give much better vision than glasses do, this is because glasses can't correct the irregular astigmatism that keratoconic corneas have.
Lia
Thanks Lia, I will speak with my Optician fairly soon as I'm certainly not experiencing much better vision with my lenses than my glasses; I think probably a little bit better during the day, and at night it's worse.
I've gone through a period where I haven't been wearing my lenses regularly though so I feel I should wear them for a longer continuous period to give my eyes a chance to adapt and then have more details when I speak with the Optician.
- CrippsCorner
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Re: Ghosting - does it ever get better?
Lia Williams wrote:Paul_M9 wrote:I have found thought that wearing glasses gives me less ghosting at night, maybe that's the best option for me?
From everything I have read it seems as though RGP lenses should always give me the best vision, is it at all possible that glasses could instead?
I don't know why your glasses are giving you less ghosting at night than your contact lenses do. The only thing I can think of is that at night when your pupils are bigger the optical area of your contact lenses isn't big enough and therefore you have more ghosting than in daylight and that's why your glasses work better at night. But I'm not an optometrist so this is only a guess.
Yes you are correct that usually RGP lenses do give much better vision than glasses do, this is because glasses can't correct the irregular astigmatism that keratoconic corneas have.
Lia
Not ghosting, but I find light reflection worse at night with my lenses (which I really notice if I'm attempting to drive somewhere)
Regarding the original question, in my unfortunate experience, post-CXL haze/ghosting does not get any better mine was terrible after CXL; I literally couldn't see a A4 sized letter from 6 foot away. It's massively improved now, but will never get back to how it was. I done a lot of Googling, but the only research I ever found was something where they followed a patient for 24 months. It's been longer than that for me, and there's been no improvement whatsoever after that period.
Sorry. It really sucks. At least you didn't have to pay for the privilege of screwing your eyesight up! I did.
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