Help Needed for KC contact lens surgeon

[MyAccount]

Hi Friends,

I am new to this group so please bear with me if I ask something very obvious. I was diagonsed with KC about 8 yrs ago on my left eyes when I was in uni. I tried rigid contact lenses but shortly gave them up as I found them real difficult to wear . Since then, for last 8 yrs I am going fine without any lenses. Recently though, I thought to go for lenses as I found difficulty to drive esp. in night. I went to Eye Hospital for contact lenses, but surprisingly the surgeon there directly adviced me for cornea graft and send me for pre-op checkups. Later when I realised that ths guys have opted me for graft, I requested the nurse to let me meet the Doctor again and discuss the option of contact lenses. However, after persistent request, she did'nt allowed me and instead told me that if I want to see the surgeon again, I need to take another appointment. I got my first appointment after a wait of around 1.5 months and I do not wait to wait again to see the surgeon again.

Now, having fed up with NHS waiting time, I have decided to go for private surgeon and really want to try the option of contact lens before going for graft. Also, my family is bit tensed after knowing that I was told to go for transplant.

I would kindly request you guys if you can point me to some good contact lens surgeon in London or in around area. Also, is it normal to go for graft as the first option without even trying for contact lens? I am 28 yrs old and live in Bristol, if that helps anyway. I always thought that graft is the last option. Pls help me. I really want to go for contact lenses option before going for graft.

Many thanks in advance.

-KC affected guy

[Vic]

Hey there,

Welcome to the group. I was very interested by your story, as I'm also originally from Bristol, and was under the Bristol Eye Hospital for several years and had a graft there. I had a very similar experience with lenses - tried them very briefly, and really couldn't get on with them, and rather try anything else / look at lenses further, my surgeon in Bristol went straight for the option of a graft. As I really didn't know much about KC / lenses then (I was 17/18) I assumed that this was usual to go straight for a graft rather than persevere with lenses, so I went for the graft. It sounds as though you may have the same surgeon, and it seems like the general stance at the BEH seems to be one of going for a graft quite early rather than exhausting other options. I think it's definitely worth giving lenses a go before you opt for a graft - or at least ask if it is an option.

Vic

[Andrew MacLean]

Hello KC affected friend

I had not heard before of people being directed to an early graft, but I do know that you are in charge of your treatment. If you prefer to try contact lenses prior to a graft (and this is, after all, the most reuglar regime), then it does seem to me that you hve every right to pursue your preferred option within the NHS.

I'm afraid I have no knowledge of the situation either in Bristol or London, but if you are unhappy with the advice given by one ophthalmologist, you are entitled to ask for a second opinion.

All the best

Andrew

[James Colclough]

I too put surgery on hold.

Currently using daily soft lenses under the rpg.

Comfort is fantastic.

The only problem I have is taking the soft lenses out.

Give paggy back lenses a try if you are able.

[John Smith]

As has been said above, they are your eyes, and it will be your choice.

Although grafts are usually the "last resort", you could have reached the limit of your particular consultant; or it is always possible that your KC is so bad that you are already in graft territory. We can't see your eyes, so we're not really in a position to comment.

As for recommending a decent optometrist, there is a section in the members' only pages that lists members' recommendations of opticians. If you're after contact lenses, you're often best seen at an independant "High Street" optician (i.e. not one of the Big Names).

If you're not a formal member of the group yet, then please get in touch with Anne who will be pleased to help out (and you'll get a nice load of useful information, too!)

All the best,

[Raj]

Hi

I think you should try and contact Moorfields eye hospital in London (Old Street). I have been wearing hard lenses for three years now and i simply cant stand them. When i take them out i have no option but to go to sleep!Despite my continuous requests for a corneal graft, the optoms there keep saying the condition is not svere enough! I know this is not the case as, without my lens, i cant even see the first line with my left eye.

Im sure if you go there they will fit you with lenses. In the mean time if any of you guys could advise me who to contact to talk about a corneal graft elsewhere it would be much appreciated.

Thanks

[John Smith]

Hi Raj, and welcome to the forum.

Why are you asking about a graft? Have you exhausted the lens options? Have you tried sclerals?

Are you talking NHS or private for a graft?

I'm not being obstructive, you understand... just trying to understand what your needs may be.

[jayuk]

Myaccount

Welcome to the board!

Indeed it is very surprising that you have been sent straight to the cutting board! As even with a graft, life can get pretty challenging if things take longer to heal than expected, or your procedure experiences complications.

I would definately explore te lens option. Yoou have, in my opinion, done the right thing here and seen someone private, al be it at your expense. Where abouts are you in London?.....Ill be more than happy to throw a few names to you who specilaise in fitting KC corneas!..throw me a PM

Jay

[jayuk]

Raj

Im with John on here, why are you looking for a graft?...Have you exhausted the lens options?...Which have you tried? Whilst I can appreciate that without your lenses you cant see the top line; many KC affected people who can be classed as mild/medium cant also see the top line; yet can get 20/20 with various contact lens designs

Jay

[Raj]

My right eye is fine with the hard lens fitted but the left one is where the problem lies. I have been through 7 different shapes and sizes of hard lenses is my left eye in 3 years. They all ended in the same result... eventually, looking to the left or right while driving or playing football would make it pop out! (AT £50 a pop... u can understand my problem... lol).

I am now wearing a soft KC lens in the left which never falls out. The only thing is with the left lens on i can only see the second line. The difference between my left and right eye's sight is starting to make my head hurt.

So guys... thats my situation. I hate to sound like im complaining but i have never really spoken to anyone else with KC so ur comments are much appreciated!