UK Keratoconus Self-Help and Support Association

Hi everyone

I have had Kereaconus for approx 25years now and over the last 10 years or so the look of the eye has got very bad ,the scaring in the eye has got worse and the eye does not look straight ahead (it looks far to the left and down ).Vision wise I have always managed as my right eye is good ,but I am getting more self conscious of the way I look .I have recently been to the hospital and they are in the process of making a soft lens which will be hand painted so it should look better ,however this will only cover the center of my eye as they could only manage to get the small lens in (not the larger one they wanted too ).

I have spoken about a corneal transplant in the past ,but have always been a bit scared too ,but recently I have been giving it allot more thought .if anyone could help me with the following questions I would be very grateful .How normal would the eye look after the operation ,i.e. would it still look as if I am looking to the left and down ?How long do you normally have to wait for the operation ?(I would probably have it done at moorfiels ).Also how long do you have to wear an eye bandage /patch for.


Sorry if I've rambled on a bit, but it’s good to get it out the system!

Many thanks

Rob

Rob. Welcome to the forum.

Like you, I kept on deferring my first graft. I have never regretted having my grafts done.

I never needed any sort of bandage lens or eyepatch. I did need to wear an eyeshield at night to protect against nocturnal eye-rubbing.

My sutures were left in place for about 18 months. My vision (with correction) is now better than 6/6.

At first my eye looked a bit like I had shared a boxing ri g with Frank Bruno, but I think it was back to normal in about a week.

All the best.

Andrew

Hi Andrew

Thanks you for your reply so soon .this is a great website it’s nice to get answers to questions /concerns so quickly rather that waiting months for a hospital appointment.

I suppose for me my concern is how I will look afterwards .My left eye hasn’t looked 'normal' for years ,Like I said on my previous post ,the scaring is quite bad which I hope will disappear with the craft ,but will the eye sit center again as appose to be being permmantly to the left ?. Because of this the eye looks a lot bigger than the right eye.

Many thanks once again


Rob

Rob,

Hi there!

I am not sure about whether your eye will look any different, a corneal graft removes the cornea you already have and replaces it with a new one. Hopefully the scarring will be better, so it could help with how it looks. I guess it depends where the scarring is? I have had a graft but still have some scarring as it is deeper than the cornea. I had a DALK with Sheraz Daya not a full graft, but it is getting better!

It took a few days to recover, and the pain was very minimal. I wore a patch to bed for a few weeks to make sure that I didn't lie on that eye! But to be honest it was all ok. A week after the op I went to Cornwall and sat on the beach trying to avoid any flying sand!! Hehe, my surgeon was not very impressed! LOL! It was all ok though and I made sure that I took all the eye drops they give you. I only use a lubricating drop (systane) now, twice a day.

I have always said that I didn't want a graft, but when I was on sick leave for months when I had a ulcer on the good eye (due to over wearing lenses) I decided that I might as well try to get some vision in my bad eye. I would have had to get an appointment with a consultant in Moorfields where I am a patient, which is hard at the best of times so decided to go privately. I wouldn't have been able to afford it but I was very lucky to get a large tax return so decided to put the money to good use.

I don't regret having a graft done but always tell people to try all options before they go for surgery. I tried many lenses in the bad eye including sclerals but couldn't tolerate any of them. The vision in this eye has always been very bad, I could only just see the light box, never mind any letters on it! Now with a kerasoft lens I get 6/15 in this eye and for the first time have binocular vision!

Wishing you all the best with everything, let us know how you get on! Love Claire X x X

Ruralrob, I recently had a corneal graft done in my left eye (11/11/09).

Since the scarring in my eye was quite bad I had no option other than to go for the full graft. So far the pain has been minimal & the only problem Ive had is a bit of dryness ( the cornea has been stitched in quite tight so the centre of my eye doesnt lubricate as well as it should) & a slight increase in the eye pressure.

From the initial consultation with the consultant I only had to wait 8 months for my operation ( Im not sure if that timescale is unique to NHS Lothian as my operation was done @ the Princess Alexandra Eye Pavilion in Edinburgh).

Like Andrew I never needed any bandage contact lens. I did have to wear the perspex eye shield all the time for the first few days until the initial outpatient appointment with the consultant ( mine was 5 days after my discharge from hospital). Now I just wear it @ night.

My eye looked perfectly fine which surprised me as I thought that there would be a bit of bruising. In fact if it wasnt for the eye shield you couldnt tell if I had eye surgery done ( my consultant must have been very gentle).

All the best

Greig

Hi

I had my graft 11 months ago. I wore the plastic eye shield only at night for a few months to ensure that I didn;t rub the eye. I was initially meant to have the bandage in my eye for a week however had a few complications and have still got it in to this day - this is nothing to do with the cornea graft I may add (don;t want to put you off), this is due to my own skin not healing correctly due to me also having lid margin disease.

I have done a blog with my graft that you could look at. To get to the pictures you will need to scroll down to the bottom of the page and then click 'older posts' until you get to first post. I have quite a few pictures on there of my eye the days after the surgery.

As i have said though - don;t get too hung up about the problems I have had as this is NOT due to the graft, the blog explains it all anyway. here is the link http://www.mycorneatransplant.blogspot.com

I put off my vision for over 10 years without even going to an opticians and it was only when people started to notice a squint in my eye that I decided to go see an optician and get referred. I am lucky enough to have private healthcare through work so went private. The consultant I saw said if i didn;t have a graft there was a chance of not only the squint getting worse but also the risk of the cornea tearing cos it was stretched so bad. I only had to wait 2 months for the graft but again this is as was private so not sure on the waiting lists for NHS.

All the best.

Hi Guys ,thanks to all who have responded to my post .

I too have tried a sclearal lens and found it a nightmare to wear.from what i've read it sounds like everyone is please they had the graft done ,so thats reassuring to know .

Like I have said before though, does anyone know if the eye will sit center again as this is my main hang up .I just want to know that when I'm having eye contact with someone both eyes are looking at them .I have added two links at the bottom with a couple of pics as my eye is now .At the moment ,like Claire I cannot even see the light box never mind the letters ,I guess because vision has been so bad for so long this has made the eye drop down /left .

I will wait and see how I get on with this new lens they are making ,but I'm not holding out too much hope ,as this will make me totaly blind in my left eye ,so a transplant is looking more down the road to go .

many thanks once again

Rob


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http://i891.photobucket.com/albums/ac11 ... eye001.jpg

Rob,

If your cornea is thick enough there is always Intacs.

There is also the option of soft lenses for KC. I have met a few people now who were on the list for a graft, tried sclerals and much to everyones surprise the soft lens for KC actually worked.

It sounds like you have nothing to loose in trying a soft lens or even intacs as if they don't work then the graft is still an option.

I am pleased I had my grafts 20 years ago (no one can tell I have had a graft and it was when I had nothing else to loose), but back then there weren't the options open to people with KC now.

I would ask the consultant or optician when you see them about whether the eye will sit right. I would have thought it would as you will be able to see what you are supposed to be looking at.

Hi ROb . Just a quick question when did the eye start to decenter in that way ? IS is the cone which is displaced therefor giving the appearance that your eye is down and to the left or is the hole eye ball rotating down and to the left ??