UK Keratoconus Self-Help and Support Association

Hi everyone

I've had KC since I was a teenager. In 1998 I had a graft on my left eye. The result has been fantastic - no problems at all and good vision with glasses.

My right eye has now deteriorated. I had a RGP lens but it became so uncomfortable I could only wear it for about 2 hours. My optician has now fitted me with a Scleral lens - the comfort is fantastic but the vision is a lot poorer than with the RGP lens (having been able to read several lines down the chart, I can now only read about 3 and they aren't clear).

I have had a topography done (and thanks to my kind optician have my very own copy of it!). So, for you experts out there, the Sagittal Curvature (Front) shows a lot of grey areas in the middle (the lowest number is 4.46). The Corneal Thickness is almost at the top of their scale at 336 in the centre.

Yesterday I went for a checkup and saw one of the consultant's team. She suggested to me that I should seriously think about a graft because my vision is so poor with the Scleral lens. I suppose her view is that I have nothing to lose and could gain a lot.

I have an appointment in early January to see the optician who fitted the Scleral lens. The consultant said she would leave the decision with me and to let the optician know what I decide to do.

So do I or don't I?? If I do apparently the waiting list is about 3 months. This gives me another problem - we have a holiday booked in August to go to Kenya. Would it be safe to have this operation then go to such a destination? I talked it over with my GP today (who also has KC!) and he seemed to think it wouldn't be such a problem and even offered to give me anti-biotics to take with me incase I got an infection.

Thanks for "listening"!
Joanne

have you tried any of the new soft lenses specifically designed for KC? i understand from other posts that some people have got good vision and comfort with soft lenses when rgp/scerals lenses havent worked. Something for you to consider and talk over with your optician/contact lens fitter

Joanne

It sounds like the time has come for you to make a serious decision. If you do go for the graft, you have my every good wish. As a similar stage to the one you describe, except that I couldn't see the top line with my scleral in, I accepted the offer of my second graft.

All the best

Andrew

if you decide to go ahead with the graft you shouldn't worry about visiting Kenya. if i calculate correctly that will be more than 4 months after the graft. general hygeine will be important, but otherwise I wouldn;t worry. since my graft i have travelled in remote areas of Southern africa including 2 weeks camping on the beach in Mozambique, and haven't had a problem. (infact my other eye with piggy backs gives me MUCH more hassle). my Optham always gives me antibiotics and a briefing on recognising the signs of rejection etc... and i keep the eye clean with sterile wipes or bottled water (not tap water) and have never had a problem. Kenya will also have decent hospitals and english-speaking doctors- so there is always backup!
good luck with your decision...

Thanks for the replies. I'm more or less thinking I should just go with it as I can't put off the inevitable... but I need to wait to speak to my optician on 7th Jan first.

One very sereous consideration with a graft is that once done, there is no going back.

The other is that any corneal surgery is designed to make the vision in that eye easier to correct which for many cases still means wearing lenses. Now most people I know post graft cope better with lenses than they did pre graft.

There are other surgical options you may wish to consider if your cornea is thick enough such as intacs (available on the NHS), CXL or intacs with CXL. Any surgical intervention to help KC can mean a 6 - 18 month recovery time before you get use able or stable vision.

Just becasue we have KC doesn't necissarily mean a graft is inevitable because we now have other options as mentioned above.

Soft lenses is a serious consideration as I have met quite a few people they needed a graft and since wearing soft lenses they see perfectly well and there is an increasing number of people wearing soft lenses whos overall corneal health has improved. Such as reduced scaring and less light sensitivity to name but two improvements.

Good luck with whichever path you choose to follow.

Yes, I've had my left eye grafted and know what I'd be letting myself in for (not so sure that's good!!). I now have to wear glasses to correct my vision. I have been given the option of contacts for that eye but I just don't want to put anything in it and since vision is good with glasses I don't need to.

I looked into another surgical option but my cornea is very thin and scarred so it's not possible for me.

I will talk to my optician about soft lenses. Do you (or anyone else) know if these are an option with very advanced KC (as in my case)? It's never been mentioned to me before so perhaps it's not an option.

I'll let you know what I decide to do.

Hi Joanne,

It is possible to get good vision with soft lenses with advanced KC now but not many opticians are yet familiar with the new lens KeraSoft IC (Irregular Cornea) which can fit more advanced cases.

I cannot say whether you would get good vision or not - it depends on the individual - but its certainly worth a try before you get a graft. As I am involved with the design of the these lenses as well, I would be happy to talk to your optician about them if he is not familiar with them.

Lynn

Lynn

Thank you so much for your reply and offer of help, it is greatly appreciated. I will certainly talk to my optician about these lenses when I have my next appointment in January and take your details with me. I attend the eye department at the Coventry & Warwickshire Hospital - have you had any dealings with them?

Many thanks
Joanne

Joanne

I don't know how much experience Walsgarev in Coventry have, but they have seen the results these lens can give as they have been monitoring me during my transition from RGP's to soft lenses the past 12 months and have been very pleased with my progress, improved cornea health, wear time and my level of vision. Hopefully at my Feb appointment, my visits will become annual. With RGP's it was monthly and during the transition we went to quartlery, at the last vist they changed to six months.

Lynn will be able to say if they have any experience of fitting the lenses as she fitted me up with the KIC lens.