UK Keratoconus Self-Help and Support Association

Hi, I'm a newbie to this forum and have had KC since I was 19.
Had it first in my left eye and gradually developed in my right. I have been wearing Gas permeable lenses ever since and am used to them; the odd irritation but very minor.

I've noticed now that my sight is not as good as it used to be in the left eye and find myself squinting to read stuff. So I went to the hospital who specialise in this and we've tried a change of lens, tried increasing the power and strength, all to no avail.

I was advised that there is a treatment we could try which required a minor op at the back of the eye which would help improve the sight quite a lot. I've been advised at the hospital that there is a very high success rate, however, I am very sceptical about this as I dont want to be the minority who has even poorer sight as a result.

Has anyone had this or been advised in this way?
If you have, can you explain what the procedure is and the result.

Thanks in advance for any information.

Hello and welcome to the forum.

I am sorry that your lenses are no longer giving you good vision. As you know there are several different types of lens designed for people with KC. They range from the large but comfortable 'scleral' through hybrids and piggy back lenses to the innovative kerasoft 3. I'm sorry that none of these has given you good vision. I guess we all know how disapointing that is!

Still help is at hand. Did they give a name to the little surgical procedure? I've never heard of surgery for KC at the back of the eye. Perhaps you have another condition aswell?

Andrew

While getting my eyes looked at yesterday I met a person from Scotland who was told it was the hospital that decide what lenses they keep and they are the ones they will fit you with. There appeared to absolutly no consideration that no one lens type fits all of us so there are times they need to condised getting other fitting kits for those people that the standard fitting kits held by the hospital are no use.

I've heard similar cases to in England so seems to be relatively common throughout the NHS system.

I know of three cases now where people with KC went privatly to lens fitters to fitted with a type of lens the hospital hadn't tried and got excellent vision. They then turned up at their next scheduled hospital appointment with the lenses that worked for them and those hospitals are now continuing to manage their eye care.

Keep on at the hospital and ask what lens types they have tried and why they don't work and I am sure peopel here will share the lens types they use and you may well find the hospital hasn't tried them. Due to the unique nature of KC it is wrong for anyone to dismiss a lens without first trying it. Many of us have been there, me included, I was told soft lenses would not work and now I have soft lenses which surpass the performance of the RGP lenses. My hospital is graceous enough to admit they were wrong and now try fitting other people with the same type of soft lenses I have.

My own experience in Scotland is that hospital optometrists go the extra mile to find the right lens for each patient, although at the conference in Glasgow this year we met a high street optometrist who took the view that the RGP is the only suitable lens for people with KC.

I guess we all just have to be willing to ask about other lens options if the ones we are using no longer work.

I also know that the Scottish Professional body for optometrists who fit contact lenses has been active through it's PDP programme in passing on developments in lenses for patients with KC.

Andrew

Thanks for the reply guys.
The lenses I have are Rose K2 (?). Are there lenses now that surpass these types on the NHS and do you think it may be advisable to visit a specialist optom instead of the hospital now?

Don't know about surpassing the Rose K but there are several different lenses and lens materials. Have they suggested or tried sclerals, hybrid lenses, kerasoft lenses or anything other than variants of the rgp? In your place I'd be asking my hospital clinic to explore other options.

Also, do not dismiss the surgical option. Ask about the procedure they suggested. Find out what exactly they intend to do and about the possible outcomes. If you find out what the surgery involves it is possible that somebody else here has experience of it and can share their experience with you.

All the best.

Andrew

Unfortunatly there is no one lens that suits us all. Each lens has its pros and cons which are dependent on you individual case of KC.

I am always meeting people who ended up with grafts because after three or four contact lenses they were told there were no other options. These are pople who have had no scaring and were getting about 6/15 on the eye chart, it was just lenses were uncomfortable.

I think all hospitals, everywhere, decide which lens types it is worth them keeping on site - and indeed, how much expertise in lenses and different types of lens they keep in house,.
Or whether they keep none at all and contract out all lens work to local high street practices.
A big hospital in a major population centre, like Gartnavel, will be more likely to have a greater range of lenses and specialist expertise than a little hosital in a rural area.
Of course, if none of those in house work, one should be able to ask for a referral to a more specialised centre - and then have te job of travelling there.
Rosemary

Actually .. let me jump in here guys...

They are talking about an op at the BACK of the eye so there may be more here than just KC. You have to remember that having KC does not automatically make you immune from other eye problems...

So gurdevb - what exactly did they say was wrong at the back of the eye? What you have told us is very vague and does not really relate to KC - unless you got the wrong end of the stick!

Lynn

Andrew MacLean wrote:

Still help is at hand. Did they give a name to the little surgical procedure? I've never heard of surgery for KC at the back of the eye. Perhaps you have another condition aswell?

Andrew

I've been puzzeling over that myself.