UK Keratoconus Self-Help and Support Association

Hi

I have had keratoconus for approx 20 years. When I first found out I had it I was seen by a local hospital which put me on the soft lens route, I assume as it wasnt that bad at the time. It was only in one eye then and I could see ok, but i could never put up with the contact lenses, after an hour my eye was irritated. They tried me on different types (no idea on the specifics) all felt painful and made my eye sore after a few hours. I put up with it for a couple of years and finally gave in when i went off to uni. Revisited treatment options again a few years back after being bugged by friends and family. By then it was in both eyes. I thought i got lucky with a referal to Moorefields in London. Again contact lenses were the only option ever mentioned, and to say their setup was antiquated would be an understatement. Back when i was first treated the specialist had hand held device to map the contours of the eye, at Moorefields it was a bunch of bits in an old wooden box thought i had travelled back in time.

Being seen every 6 months was really annoying as I could still only wear them for an hour or two without it irritating my eyes and felt it wasnt really getting me anywhere except to make life harder. The lenses always felt like they were popping out, they didnt sit on my eye at all well, but i had to wait for each visit for them to adjust them to get them to hang right (weighting them at the bottom etc). Working on a computer all day it never really worked. The lenses gave a different magnification in each eye if that makes sense, so i ended up with double vision. I suffer with hay fever which could last three months plus which always made it hard getting a long enough use. They knew i had trouble wearing them they would always say just try your best. I always had trouble with my eyes drying out but never provided anything to really deal with that, including when they said i had trouble with my tear ducts it was come back in 6 months.

So i never got into wearing them and each visit was made worse by having to see someone different each time and go through explaining the problems etc like they didnt seem to have any notes between visits. After 1.5 years i gave up with them too after moving home and since then just lived with it again.

Now though im getting very bad eye strain with lots of headaches. So I'm interested in the other options which seem to be about now, and how people find dealing with their care provider. I would consider going private, or at least outside of the NHS given they only ever suggested rigid lenses and took so long to get the lenses. Having seen mention of the kerasoft lenses and cross linking treatments, I'm wondering whether its worth getting referred to a hospital again, or going outside NHS.

Tony

Dry eye: there are now all sorts of new treatments for dry eye. I use clinitas soothe.

Lenses: There are a number of new lenses available on the market. RGP is still the standard type for people with keratoconus, but in my time I have tried all different sorts (soft, hybrid, piggy back and scleral) all on the NHS.

I'd definitely say it was worth while getting a referral back to your NHS clinic. Also, if you want to explore CXL, you could ask your NHS consultant about it. You never know, you may live in an area where CXL is being tested for the NHS. fAiling that, and nothing being lost, you could seek a private consultation.

Welcome to the forum and every good wish.

Andrew

Hi Tony,

The options available through hospitals vary with each PCT, so its very difficult to generalise about what you can get where. As far as state of the art surgeries go, you are only really going to get a full option going privately. Often its the same consultants as you would see in the NHS, but they can offer a full range of treatments whereas in the NHS most of these are still not an option open to all.

However, If you have had keratoconus for 20 years and are relatively stable, then you have nothing really to gain from CXL, as this is a process that basically slows or halts progress of KC. There are other surgeries such as INTACS and phakic implants or minor refractive surgery to reduce astigmatism.

As far as contact lenses go, most hospital eye clinics will offer a fair range of lenses, but not all. Some only offer a small range of lenses - and this has a lot to do with limited resources. Technology has leapt ahead in recent years and there are more lenses available now than when you last went through the system. However, I would have to say that most hospitals offer RGPs as the main CL option.

As Andrew says, if you are keen to get going again, then you can go through the process of being referred back into the NHS system. This will, though take time. If you want quicker action and can afford to go private - then do some research first.

Every person with KC is unique - so take in what people say but ultimately, you have to make decisions from your own perspective!

Lynn

Hallo Tony and welcome.
Do I gather from your post that your KC seems to be gettingorse again recently, thus giving the headaches, etc? - or just that your life is getting more hectis and it's harder to cope with the KC?
CXL is designed to slow /halt the deterioration of KC, rather than "cure" it - so if your KC is getting wrse it might be worth considering.
SOme people do find their vision slightly better after the vision has settled down - up to six months on - but generally still need lenses/specs.
As well as the cost if you go private, there is the disruption to your life taking the time off, the timefor the eye to reover and vision to stableise, and some people get quite a bit of pain.
As regards lenses - there are new types coming along all the time, and if you decide to try the K3s, good luck with them!
You say you've had a lot of problems an dnever got on with any type of lens you've tried, including soft ones.
Have you ever tried sclerals ? - and if not, I wounder if it would be possible to try them?
These are hyge lenses - you'll have a fit when you first see one; we all do!! - that fit right over all the white of the eye, and rest on the outer, less sensitive part. And because they go right under the eyelid, there's no awkward edgto catch when you blink, or to ove around and catch as you look around.
SOme of us love them, others don't get on with them at all. Therey're another option.
As regards getting referred - yes, worth it you don't say where inthe country you are (I presume you're inthe UK). HOspitals do vary - those in large opulations centres see more KCers and have a greater range of expertise and options than those local to rural areas where there are very few of us near them.
There are also some where, instead of having the CL departments in house, "contract out" the CL work to locally-ased high street opticians with the relevant specialist interest in KC. This can work very well, if they contracting out is to someone with a real knowledge and interest in fitter KCers.
As regards dry eye - arious people here have recommended various types of soothing eye drops; other suggetions have included dietary changes, making sure you drink plenty of water/juice to keep well hydrated, and humidifier sprays.
Whatever you decide to do, good luck, and do keep us posted about how you get on.
Rosemary

Hi

Thank you all for your replies. I went to the opticians over the weekend just to get the eyes checked out, nothing unusual just the keratoconus and astigmatism. I tyhink my vision in my left eye has degraded quite a bit could only get to the thrid line on the chart, usualy I can manage the fourth and fifth. The right eye well that can manage the first line only as it has been for a while. It was suggested I get some glasses to help with one of my eyes when not using lenses, but having spoken to the optician there today, he confirmed what I had thought and that is its probably a waste of time until I try the CLs again and see how things settle down first.

So I'm getting a referal back to the hospital and see whether they can do with alternatives other than RGPs. Sounds like CLX isnt an option at this late stage which I hadn't picked up on reading about it. I'd rather avoid surgery if i can, so hoping there will be a new lens solution, or i can just put up with the things this time round.

Thanks

Tony

Tony,

Regarding the CXL, just becasue you can't see much on the eye chart is no indication that CXL is a no go, you really need a good topography measurement that can also measure corneal thickness. As long as the cornea is greater than 400 micrometers thick then CXL can be done, some consultants are combining htis with intacs. Small cresent shaped bit plastic inserted into the cornea to produce a less steep cone and once that has stabilised CXL done to help hold the corneal shape and prevent/reduce the progression.

An improved corneal shape can make the contact lens fitting easier and the the more regular shape often improves the lens comfort. There have been many instances where post intacs suitable vision correction is obtained with glasses.

CXL only takes about 30 - 45 minutes to eprform as a day patient and I think intacs is again a day patient and only takes a bout an hour to perform so worth remebering if you are having problesm with contacts.

Plus there are soft lenses now for KC, I use the Kerasoft 3 silicone hydrogel lenses and without them I can only see the white background of the eye chart white box. With the lenses I get 6/5 which is better than normal vision.