To all who have joined this forum recently

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

Matthew1983
Newbie
Newbie
Posts: 1
Joined: Thu 21 Nov 2019 3:18 pm
Keratoconus: Yes, I have KC
Vision: I have Intacs implanted

Re: To all who have joined this forum recently

Postby Matthew1983 » Thu 21 Nov 2019 3:25 pm

Hi all,
Been suffering with KC for about 15 years started in my early 20s. Left eye much worse than right.
Tried glasses and contacts to correct left eye but to no avail.
Opted to have intacs or kera rings that unfortunately haven't worked so back to square one.
Consultant doesn't believe left eye bad enough for corneal transplant but can't see anything clearly with it without any kind or correction.
Anyway that's my ramble. Anyone had experience of corneal replacements and any issues to note

RedOnion
Contributor
Contributor
Posts: 16
Joined: Thu 17 Aug 2017 8:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby RedOnion » Sat 23 Nov 2019 7:42 pm

Hi Matthew,

Welcome to the forum. Corneal replacements are something I have no experience with but others here have and will hopefully provide some help.

Hope all goes well for you :-)

MaggieP
Newbie
Newbie
Posts: 2
Joined: Sun 24 Nov 2019 3:09 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby MaggieP » Sun 24 Nov 2019 4:00 pm

Thank you for adding me to the group. I have had Keratoconus forty years and managed quite well with GP lenses until recently. I have some scleral lenses but really could not get on with them so my optician has sourced some large GP lenses. I am having a strange problem in that they are fine for a couple of minutes and then cloud over making my vision really cloudy. My optician says he can see deposits forming on the front of the front of the lens as soon as I blink - he has sourced a new pair of lenses and coated them with Optimum Hydro peg but they are exactly the same. Has anyone else had a similar problem? I now have two pairs of expensive lenses I cannot wear and am wearing the old lenses that are damaging my cornea.

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Lia Williams
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Posts: 444
Joined: Thu 16 Feb 2006 5:27 pm
Location: Surrey

Re: To all who have joined this forum recently

Postby Lia Williams » Sun 24 Nov 2019 7:13 pm

Matthew1983 wrote:Tried glasses and contacts to correct left eye but to no avail.


Matthew1983 wrote:Consultant doesn't believe left eye bad enough for corneal transplant but can't see anything clearly with it without any kind or correction.


Hi Matthew,

There are lots of different types of contact lenses for keratoconus these days but trying to find the right one never seems to be straightforward as the way keratoconus affects one's eyesight varies so much from one individual to another. What types of lenses have you tried? Have you tried scleral or semi-scleral lenses? As they vault over the cornea people with sensitive corneas can find them more comfortable than corneal lenses.

You might find it useful to look at some of the videos from the Keratoconus Group conferences. In particular you may find Waheeda Illahi's talk from the 2018 conference about contact lenses particularly useful. The videos from 2018 can be found here:

https://www.keratoconus-group.org.uk/in ... deos-2018/

Personally I've not had to consider a transplant but I have had problems getting a lens that gives good vision, comfort, wearing time and is also a healthy fit. What has to be remembered that unlike intacs or kera rings a transplant is not reversible and also may need to be repeated in future years. So it may be that your consultant is reluctant consider a transplant in one eye when you can still see out of the other. It also needs to be remembered that even after a corneal transplant the transplanted cornea may also need a contact lens or glasses to see clearly. But for people who have exhausted all contact lens options with both eyes a corneal transplant can give them their vision and life back.

Lia

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Lia Williams
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Posts: 444
Joined: Thu 16 Feb 2006 5:27 pm
Location: Surrey

Re: To all who have joined this forum recently

Postby Lia Williams » Sun 24 Nov 2019 7:28 pm

MaggieP wrote: I am having a strange problem in that they are fine for a couple of minutes and then cloud over making my vision really cloudy.


Hi Maggie,

I had a similar problem with one of my lenses clouding over after an hour or so's wear. In my case the problem was not deposits but bubbles forming under the lens and forming froth between the cornea and the lens. The problem was solved by piggybacking the corneal lens with a daily disposable lens worn underneath the corneal lens. The disposable soft lens effectively smooths the surface of the cornea so the tiny bubbles don't form.

It seems strange that deposits don't cause a problem with your old lenses but do with your new ones. Could it be that the new material is causing the deposits to form? Why are your corneal lenses no longer considered to be suitable for your eyes? If they are rubbing the corneas then piggybacking could be an option. It certainly worth asking whether it could help, and it would be quite easy to try as a soft lenses could be tried with your current corneal lenses.

Lia

MaggieP
Newbie
Newbie
Posts: 2
Joined: Sun 24 Nov 2019 3:09 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby MaggieP » Mon 25 Nov 2019 7:09 pm

Thanks Lia - I think it is the new material causing the problem- frustrating when the old lenses are the best vision and comfort I've had for a while but according to the optician are causing scarring to my cornea. I will ask him about piggybacking and persevere with the new lenses and see if they improve. I am grateful to be able to get a reasonable standard of vision with ordinary lenses - had a really bad experience with scleral ones.

Maggie

Wmouka
Newbie
Newbie
Posts: 1
Joined: Tue 23 Jun 2020 12:15 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Wmouka » Tue 23 Jun 2020 12:21 am

Hello, just joined - I have had KC for a long time, currently use RGP lenses. I moved to the UK some 5 years ago and i need to get new lenses as my left one seems scratched (keeps blurring up very quickly).. tried cleaning several times but not working... I need recommendations for experts to go to for this... I live in surrey...! Thanks

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Anne Klepacz
Committee
Committee
Posts: 2103
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Tue 23 Jun 2020 9:38 am

Hello and welcome,
Most of us get our lenses through hospital eye clinics, where the specialists in KC work, so in normal times I'd be saying ask your GP to refer you to an eye clinic with a contact lens department. But with Covid, clinics have been shut for months and as they re-open, they're going to have backlogs of patients to see which doesn't bode well for waiting times. But there are optometrists on the High Street with an interest in KC and who have experience in fitting rgp lenses. Have a look at this list https://www.keratoconus-group.org.uk/optoms/ It's quite old now, so some entries may be out of date but I hope you'll be able to find someone who can help. Let us know how you get on.


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