To all who have joined this forum recently

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

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Moderators: Anne Klepacz, John Smith, Sweet

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Anne Klepacz
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Posts: 1996
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 19 Dec 2017 10:36 am

Hi Suleman and welcome,
It's always stressful to be diagnosed with a condition that most people have never heard of. But it's disappointing to hear of your experience at the first hospital your wife went to. Most of us get our lenses through a hospital eye clinic. That automatically means we get the lenses at the subsidised NHS rate for lenses that you mention. And the optometrists who work in hospital contact lens clinics have a lot of experience and expertise at fitting lenses for KC. There are good KC fitters in private opticians (you'll find some of them here https://www.keratoconus-group.org.uk/optoms/index.php) but although that service is quicker, the costs are much higher. Wolverhampton does have corneal specialists and a contact lens department so do ask your GP for a referral. The right lenses should make a big difference to your wife's vision.
If you'd like our information booklet about keratoconus and newsletters from us keeping you up to date with the latest options for KC, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you our information.

RichardL
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Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby RichardL » Wed 03 Jan 2018 4:17 pm

Hi Everyone,

I've just joined the group - great to connect with other KC sufferers.

I was first diagnosed with KC around 11 years ago, but I really didn't think that much about it at the time, and it hardly bothered me for the first few years. I used to go for regular eye tests and the opticians would always mention it, but we tend to move areas quite regularly due to work so I hardly ever saw the same optician twice so no one was really monitoring it to notice it getting progressively worse. For about the last three years I wasn't happy with my vision from my glasses, but then around 12 months ago my sight seemed to deteriorate rapidly and I finally decided it was time to do something about my Keratoconus so booked myself into Moorfields as a private patient.

Moorfields fitted my with RGP Scleral Lenses and wearing them for the first time was like suddenly seeing in high definition, I was really shocked how much more detail I could see, (although some of it wasn't good - I didn't realize how many wrinkles I had!) Getting used to wearing the lenses was a real challenge, but eventually I have got used to them and can put them in & out quite quickly now. On a followup visit to Moorfields they suggested I wear glasses over my lenses to help correct some astigmatism and now with the combination of lenses + glasses, my vision is almost perfect again.

I still have some difficult days with the lenses, which can be very frustrating - one day I am wearing them quite happily, the next it is like having a brick in my eye and my eyes become red & watery. It is so frustrating because there doesn't seem to be any pattern, but you can almost guarantee it will happen on a day when I am doing something important and need good vision. I now find it really difficult to go back to wearing my old glasses, as there is such a contrast in vision quality - I can manage fine at home, but work is really difficult if I don't have my lenses in. One of the biggest challenges is explaining it to other people, a lot of people don't know I wear the lenses so they just see me in different glasses, so wonder why I'm wearing glasses which I cant see in! I have quite a demanding job, and my employers have been very supportive it is definitely a challenge explaining the seriousness of KC to others without boring them to death, and I do sometimes get the impression that people think I'm making a drama out of wearing contact lenses because they just think of the standard disposable types.

I was also diagnosed with Blepharitis (swollen eye lids) which at least explains some of my bad days with my lenses. I need to bathe my eyes with a hot towel every day, and use a special foam to massage my lids - this can be a real pain to do, but it does make a big difference when done every day.

I am due to go back to Moorfields in a few weeks to check if my Cornea's have thinned anymore since my first consultation. My left eye is extremely thin already, but my right was holding up quite well so we now need to know if it has stabilized or if I should consider crosslinking to strengthen it.

Overall I still finding living with KC to be a challenge, but I have managed to adapt to it quite well and I am very thankful for the vision I get from my lens + glasses combo. My only regret is not managing it better for the first ten years, and so I would encourage anyone who is newly diagnosed to be proactive with getting the right treatment early on - don't do what I did and just think your vision is fine so you can just ignore it, unfortunately this disease is progressive so cant be ignored away!

Richard

Paul_M9
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Posts: 8
Joined: Fri 12 Jan 2018 7:34 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Paul_M9 » Fri 12 Jan 2018 4:23 pm

Hi all,

I'm just joining the forum to help get a bit of advice as in late 2016 I was diagnosed with Keratoconus. Fortunately I was able to get referred to Moorfields fairly quickly and in late March 2017 I had PRK and Cross-linking in both eyes.

I don't know how many people have had similar experiences but following the PRK and Cross-Linking I have actually found my vision to be worse than before having it done. Pre-surgery the vision in my right eye was poor but in my left eye was generally ok, just a little short sighted and in fact Moorfields said they thought I only needed an RGP lens for my right eye, my left was OK on its own. Now following the procedures my vision in both eyes is worse and in particular I have quite bad ghosting in both of them and this can really get on my nerves and make reading a challenge, especially when i'm tired and I can see almost two clear lines of the same text, one real and the other ghost images.

It was only after my 6 month scan did Moorfields suggest getting a lens for my left eye as well. By this point I had moved away from London and getting to Moorfields mid-week was a challenge so following the scan i went to speak with my local Specsavers branch and they said they could provide me with the contacts and could use them to get some glasses as well.

I got some new glasses in November and was really really surprised by how big an improvement i have been able to get with them. I still have a little bit of ghosting when wearing them but everything is so much sharper and I feel comfortable driving in them which I hadn't done when just using the 1 lens. Getting my new RGP lenses has taken longer and with having to get the prescription changed on the original ones ordered and delays over Christmas they have only just arrived. What i have found over the last few days with them though is that they are really not helping as much as my glasses do, in particular with the ghosting. I suspect that ignoring the ghosting my vision is sharper in the lenses but the ghosting makes it challenging for me to read at times and ghost images on everything around me are more noticeable. Has anyone else experienced anything like this before with the ghosting and any tips on how to combat it? Or could it just be that I need to give my eyes more time to adjust to the new lenses?

I'm still going to Moorfields for scans, the next one I will have in 3-4 months so I was going to raise with them what can I do about this ghosting if it hasn't improved at all. If in a few weeks my contacts are still not helping that much i will contact Specsavers to see whether they can do anything to help with the prescription. I don't know of they offer any other types of RGP lenses, I wasn't given an option.

Thanks for any help/advice anyone can give!

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Lia Williams
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Re: To all who have joined this forum recently

Postby Lia Williams » Fri 12 Jan 2018 9:42 pm

Hi Paul,

Paul_M9 wrote:Getting my new RGP lenses has taken longer and with having to get the prescription changed on the original ones ordered and delays over Christmas they have only just arrived. What i have found over the last few days with them though is that they are really not helping as much as my glasses do, in particular with the ghosting.


Paul_M9 wrote:Has anyone else experienced anything like this before with the ghosting and any tips on how to combat it? Or could it just be that I need to give my eyes more time to adjust to the new lenses?


I'm afraid that contact lens fitting can be a frustrating process. Not just for you but also for the optometrists. It is often said that fitting a KC patient is more of an art than a science.

There are lots of different designs of RGP lenses so you probably need to go back and see if the optician's can tweak the prescription or it may be that a different design of lens is required to reduce the ghosting.

Lia

Paul_M9
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Posts: 8
Joined: Fri 12 Jan 2018 7:34 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Paul_M9 » Sat 13 Jan 2018 8:42 pm

Thank you Lia. I am out of ten country for a couple of months in Spain so stuck with what I have for now but when I'm next back I will speak with my opticians about the lenses. Is there a recommended site for details on the types of lenses available?

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Lia Williams
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Location: Surrey

Re: To all who have joined this forum recently

Postby Lia Williams » Sat 13 Jan 2018 9:44 pm

I don't know of a website that lists all the types of lenses that are available.

But you might like to look at the videos from the last Keratoconus Group conference. The last video talks about the different types of contact lenses. The videos can be found here:

http://www.keratoconus-group.org.uk/conference_2016/

Lia

Paul_M9
Newbie
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Posts: 8
Joined: Fri 12 Jan 2018 7:34 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Paul_M9 » Sun 14 Jan 2018 5:08 pm

Thank you Lia

MAK1
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Posts: 2
Joined: Thu 08 Feb 2018 12:19 pm
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby MAK1 » Thu 08 Feb 2018 12:40 pm

Hello to all members,
First of all I am glad to join this forum as it makes me comfortable to hear all these different stories of people suffer the same problem as me which is kerataconus. I have suffered kerataconus since a teenager and I'm now 25. Nearly 3 years ago I had CXL done to my right eye which is my better eye. My left eye was the worser eye and could not have CXL done to it. At this moment of time my vision is controlled by hard lenses. I've been wearing them for couple of years now and thankfully has no problem. I have also been visiting the doctors regularly for check ups and my kerataconus looks stabilised. The question I really wanted to ask is out of INTACS and ICLwgich is the best procedure I should consider in order to hopefully improve my vision the best. Also considering I use to be a boxer and really want to get back In to the mix. Thanks for everyone for reading my story and can't wait for your advice. Good luck everyone and stay blessed ! Peace

User avatar
Anne Klepacz
Committee
Committee
Posts: 1996
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 » Fri 09 Feb 2018 8:57 pm

Hi Mak1 and welcome,
I'm not sure anyone here can tell you which is 'best' - our eyes are so individual that only a specialist examining your eyes can give you reliable advice. But a few things to bear in mind - Intacs don't work for everyone and about 10% are removed because they can give side effects (such as seeing the edge of the ring) which some people can't live with. ICLs are normally only fitted if the keratoconus has definitely stopped progressing which should be true of your CXL eye, but you'd need to be sure your other eye has definitely stabilised. I'm also wondering why you're thinking about surgery when you're getting on well with your contact lenses? While both Intacs and ICL or IOL can work well for people, no surgery is risk free so you need to weigh up the pros and cons carefully. You'd also need to check with your specialist about the boxing. I know that after a corneal transplant, we're told contact sports like that are out, because our eyes are weaker after surgery and more vulnerable to injury. I don't know whether that would also apply to Intacs or ICL or not, but you'd need to check that out if that's your main reason for wanting surgery.
I hope that doesn't all sound too negative! But it's worth looking at things from all angles. I've had transplants in both eyes so I'm not against surgery when it's necessary, but I do still tend to think that if it ain't broke, don't fix it!
All the best, whatever you decide.

MAK1
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Posts: 2
Joined: Thu 08 Feb 2018 12:19 pm
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby MAK1 » Sun 11 Feb 2018 9:56 am

Hello Anne Klepacz,
Thanks for the reply and the advice. Well first of all the reason I want to get the ICL done is because I have researched and have also been told that your vision improves with the implantable lens and if the improvement is good enough, then you don't need to use lenses, plus the procedure is not that painful and only takes upto 15 mins per eye. I have also been told that intacs are ring segments that are placed on top of the cornea to reshape it, which then also helps to improve your vision but I also know that this all depends how bad your eyes are, in which case I think I need some consultation. Second of all even though I feel quite comfortable with my lenses on, it can be hard sometimes taking care of your lenses and taking them on and off everyday especially when your tired. Also in the future if I can carry on with contact sports (boxing) it would be more sufficient with ICL or intacs rather then having a lens in your eye while boxing. This is all to my understanding please correct me if I am wrong about anything.
Also Anne you have done corneal transplant on both eyes how are you getting on and why did you end up getting the surgery done, other then that I hope you are getting on well and I wish you the best of health. Thank you


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