You have KC, No you don't!, Yes you definitely do have KC!

[RoadRunner]

Hi all,

In 1995 I was diagnosed with KC (I was 21 at the time). I started wearing hard contact lenses (gas-permeable) and had check-ups every 6 months. From initial diagnosis in 1995 up until mid 2002, I cannot recall very much of a change in my prescription. Then in mid 2002 I moved house to a new area and had to change opticians. I chose a well-known national chain of opticians and at my first appointment told them I had KC. After the optician examined my eyes he said I didn't have KC and that I only had a high level of astigmatism. He then got his colleague to exam my eyes who agreed with him that I didn't have KC. Since mid 2002 up until today I cannot recall very much (if any) change in my prescription. Over the past 18 months or so my contact lenses have started to become more uncomfortable at times and occasionally on my bad eye the contact lens can 'stick' to my eye. I mentioned this at the opticians and they told me to just wear my contact lenses for less time which hasn't really improved things. So last week I went to a Laser Eye Surgery clinic to see if I was suitable to have laser vision correction (believing at this point I didn't have KC). At the Laser Eye Surgery clinic I mentioned my past history with being told that I did have KC and then told I didn't. After what seemed like a thorough examination I was told that I did indeed have KC! My bad eye definitely has KC whereas my good eye viewed in isolation would not be considered keratoconic. They have recommended that I have the Cross-Linking C3-R treatment (at a cost of over £4000) in both eyes to hopefully prevent the KC from getting worse which they can do.

Obviously being told I now do have KC has come as a bit of a shock and perhaps with hindsight I should have asked more questions when told in mid 2002 that I didn't have KC. I'm not sure how bad my KC is although as mentioned my prescription hasn't changed very much over the past 14 years and at present I still have good vision from wearing glasses alone. I need to find out exactly how bad my KC is and whether the Cross-Linking treatment is something I should be considering at this time. Are there any specialists I could see that have a good understanding of KC and the medical developments surrounding it who could give me this info? Also, are there any specialists I could visit who could advise me if it is possible for me to get more comfortable contact lenses? I'm based in Herts/Beds but can travel into London if necessary.

Any advice much appreciated.

[Anne Klepacz]

Hi Roadrunner and welcome to the forum!
How very confusing for you! Though if your vision has been virtually stable for 14 years, and you still get good vision with glasses, then perhaps it's not surprising that opticians had difficulty spotting that you did indeed have KC. Laser clinics would normally do a corneal topography these days, which can detect very mild levels of the condition. They have to do that, because laser treatment on even a very mildly keratoconic eye would risk making the KC much worse. Crosslinking, as you were told, is done to stop KC progressing. But I wonder if it is actually progressing in your case? And the cornea does usually start to thicken in the over 40s, so it may not get any worse for you.
One option for you would be to ask your GP to refer you to a hospital eye clinic (a large hospital with a corneal clinic) so that you'd get a second opinion. It does sound as though the lens fit is no longer ideal on your worse eye - I'm surprised the optician didn't try to get a better fit rather than just suggesting you wear them for less time! And there are a variety of different contact lenses for KC these days, so you might get on better with a different type of lens.
Our 2007 conference covered all the various options for KC, including crosslinking and the various lenses available. If you'd like a copy, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you one.
All the best
Anne

[Andrew MacLean]

Roadrunner

My first priority, in your position, would be to get an ophthalmologist's opinion. This means a referral to a hospital ophthalmology clinic. Anne is right to say that you want a referral to a hospital with a cornea clinic (larger ones have special cornea units, smaller ones might have only a general ophthalmology department).

Some hospitals also have 'in house' contact lens departments where the staff are very used to fitting lenses to eyes with KC. In the modern world there are all sorts of different lens types and lens materials that are suitable for people with KC.

All the best

Andrew

[Lizb]

I second what Andrew has said about being referred in the first instance. Once you get referred, talk to the consultant (s team) and see if they think CXL would be suitable for you, and if possible the hospital you are attending are willing to apply for funding to carry out CXL on the NHS (still in trial stage on NHS).

On the issue of CXL the price you have been quoted is very high, compared to the prices i was quoted this year. I paid in the region of £1000 for one eye, including follow up appointments/drops etc. I did have to pay for accomodation as i didnt chose a clinic that was local to me, however i chose someone who is very experienced with KC, who made me feel comfortable.
I understand that other people using other clinics have paid similar prices to me for CXL as well, from my conversations with them.

[sophietw]

Hello RoadRunner,

It's a tricky one because although I agree with the other posters here about seeing an Ophthalmologist (corneal specialists know their stuff and will be able to measure your KC and tell you how advanced it is) I sometimes find that even the best Doctors in the country don't know enough about the non-surgical options (namely contact lenses), and tend to be itching to get in there and perform some sort of surgery such as cross-linking/INTACS/graft etc. Few seem to regard such intervention as a 'last resort', which in my (and most Optometrists') opinion they should be.

I agree with Anne that cross-linking is most beneficial for cases of KC when the condition is advancing- if your KC is stable, as it sounds like it is, you wont achieve a great deal (other than a serious dent in your bank balance...). I would recommend you go and see an Optometrist who specialises in KC and complex contact lens fitting, who will be able to give you a truly objective opinion, give you an idea of the options, including the plethora of contact lenses available nowadays, and also measure your corneal shape with a topographer and be able to monitor the state of your eyes over the years.

There is a list of KC-friendly Optometrists on this website so you can find your nearest one.

I hope that's vaguely helpful and not too contentious....

Cheers,

Sophie (optometrist)

Edited to remove a reference to a high street optometrist (Admin)

[Andrew MacLean]

Sophie

I have removed the detail of a high street optometrist from your post. We do not encourage the naming of professionals in the open forum, but you would be able to send the same information by PM.

Just to balance what you say about ophthalmologists, it is my experience that they work very closely with the optometrists in the hospital, and have a detailed knowledge of the non-surgical options available, even if they do not have a detailed knowledge of the lens types and or materials that are now available. it all has to do with the ophthalmologists and optometrists working as a team to meet the needs of patients.

Andrew

[RoadRunner]

Hi again,

Thanks to everyone for your replies and helpful information.

Given my vision has been very stable over the past 14 years I think the Cross-Linking treatment is not something I need to rush into at this stage although I was told at the Laser Eye Surgery Clinic that KC can remain quite stable for years and then suddenly progress rapidly over a few months which is quite worrying - is this often the case?

I will visit my GP and ask for referral to a hospital with a Cornea clinic.

In the meantime I will find an Optometrist (using the list on this website) who will hopefully be able to help regarding contact lens fitting. If they can also measure my corneal shape with a topographer then presumably any advance in my KC can be detected over time.

Will let you know how I get on.

[Lynn White]

Roadrunner...

Diagnosing KC is a tricky issue as historically, it is nailed down by various physical signs which, frankly, mainly manifest themselves in advanced cases. Refractive surgery clinics use topography which is much more sensitive and these clinics are also much more clued up about early/mild KC than High Street Optometrists.

However, I do concur that it is unlikely you need CXL immediately. Becoming intolerant to RGPs is fairly common with KC and there are lots of options out there including: sclerals, semi sclerals, SoClear, Synergeyes (hybrid lenses with a hard centre and soft skirt) and soft lenses (in which I specialise).

As someone who lectures around the country to hospitals, I will say that actually, hospital clinics tend to prescribe RGPs as the first lens of choice.This is especially so in this economic climate, as they are perceived by hospital financial departments as less expensive than other options. I am just mentioning that because it would be not fair to you to allow you to pin your hopes on an alternative lens supply simply by being referred to hospital. It very much depends on your geographical location and the experience of your particular hospital.

Having said all of this.... your experience points to you having quite mild KC which is stable. You really do need to get another contact lens opinion and you will note that the KC Optom list shows if a practice has topography or not. I would advise you choose someone who has topography as at least they will be able to track and monitor your KC.

Lynn