UK Keratoconus Self-Help and Support Association

To All

I have been following this forum on and off for the last five years and can relate to most with KC here...
but I also realise my KC is not as bad as it gets!..
Anyway, I have finally registered and abit about me.
I am 38 years old. I have had KC since 16 and was put on RGPs.. hated them at that time
got away coping (faking) with Glasses till I was 22.. that was when I drove the car straight into a ditch at 7pm
in the evening. I usually tell people that KC is best described as having no "focal depth perception"
So I had to force myself to put the RGPs on everyday. Naturally although troublesome it made life and sight better

I was originally diagnosed in Canada, but real treatment started with QMC in Nottingham. From 22-28 Years I
had about 1 change in prescription per year. I was medium KC on my left and mild on my right.

At 30 I moved to Rochdale and was placed under care of Birchill Hospital. My optician is Yates & Suddell in Bury. I have
been fortunate to have some good opticians diagnosing my eyes so far. Great bunch of people. Because of them I was one of the first
to have No 7 SoClear Lens in 2010/2011 - That was a defining moment in my eyesight!.. comfort and vision BLISS
I was even checked by a lady doc from Harley Street! since I was a guinea pig.

However within the year the left KC got more aggressive and I had to use a piggyback (soft/rgp) for the left KC (discomfort).
2012 was a experimental year. Due to the left; it was thought that SynergEyes ClearKone would be a solution. I went through
six different sets but it all ended with redness (mainly left) and dryness (overwear, tired eyes).
I wear my Lens anywhere from 12-18 Hours a day. Without them I am crippled. It may seem alot or Hours but I basically can't
work or drive without them. I am an IT/Security Consultant.. so sitting on a computer screens and climbing ladders is what I
do for a living.

Due to the dismal failure of ClearKone on my eyes, I stuck to piggybacking Left and a Old Prescription No 7 SoClear on Right. By Mid 2012
No 7 had released lens with deeper curvature so I was overjoyed when after 3 trials I got a good fit for the left and a re-fit for the right.
But in our world BLISS is temporal.
At present I have been refitted again with a SoClear "Optima" Lens.. (apparently it allows for more oxygen to enter the eye). A right Optima
is presently on order. The reason for this is that now I have about 2mm Corneal neovascularization in left and 1mm in right. This has occured
over the last 6-8 weeks.

So the situation now is:
1. Reduce Left Wear Drastically (piggyback will not help)
2. Reduce Right Wear (easily 80% of my vision)
3. Referred back to specialist at Rochdale (unlikely I get referred to Manchester Eye Hosp.)
4. Options??

DECISION TIME:
Right now what bothers me the most is the financial cost aspect. I am the sole bread earner and have a family. This is not something that was unexpected
but I was hoping it would happen in a few years due to the duration of my KC condition. I sometimes do work with one eye only but it is difficult and frustrating. My options from research over the past few years and optician advice are:

1. Graft on Left (free on NHS, waiting time, issue of rejections and recovery time)
2. Intact and collagen cross linking (perferable, Manchester Clinic cost £4800 per eye and recovery time)

I clearly cannot wear my lens like I do but this will have a dramtic affect on my work performance as well a family life.
I can only control the CV upto a point, if it goes overboard I am stuck with a graft.. which I want to avoid.
The Intacs and RX cost is hindering me to move forward presently. I also have to consider the window of opportunity I can get this done in.
If my CV gets worse, I get stuck with a graft.

I need some serious sincere and experienced advise with regards to this:
1. Is it worth checking outside UK for Intacs/RX i.e. US/India?
2. Are there any PCTs in Lancashire or UK for the matter who do Intacs/RX on NHS?
3. Can anyone recommend any "reasonable" private clinics in Lancashire or UK?
4. Any recommendation of Medical Insurance or Pay Plans available for KC sufferers in UK?
5. Can I apply for any benefit if I decide to work on a part-time basis due to vison problems?
6. General Recovery time for both procedures mentioned?

I will appreciate all responses on this matter. Many thanks

Hello oneeyedraz and welcome to the forum!
Wow, what a lot of questions! And I'm not sure from what you say whether you've already seen a consultant who has said that Intacs and crosslinking would definitely be an option for the left eye - as you probably know, a lot depends on the thickness of the cornea.
But yes, both the Royal Hallamshire in Sheffield and St Paul's Eye Unit in Liverpool do Intacs and CXL on the NHS. However, if you don't live in the PCT area for those hospitals, then your own PCT would have to provide the funding. Personally, I'd be wary of going abroad for any treatment because of aftercare, but that's just my view.
On the work front, do have a look at the leaflets about KC and work on the homepage of this site www.keratoconus-group.org.uk/sitev3/publications.html
You should be able to get help through Access to Work to make work life easier. Or contact your local Action for Blind People office - they have employment advisers and quite a few people who post here have found them very helpful www.actionforblindpeople.org.uk
And if you e-mail your postal address to anne@keratoconus-group.org.uk there's more information I can send you.
All the best, whatever you decide.
Anne

Hi oneeyedraz,

Having just read your post, the first thing that came to mind was 'ICD lenses would work for this person'. ICD stands for Irregular Corneal Design, and they are a bit like SoClears, but about 2mm bigger at 16.5mm diameter. Because of the extra size they can vault over your entire cornea, and land just on the sclera. They tend to fit less tightly than SoClears, therefore tolerance is generally better. They are more expensive, but possibly worth investigating? I've been using them for a year or 2 now and had great success on tricky corneas.

I presume you have been with Nick at Yates and Suddell? I've got a feeling it might have actually been me (the 'lady doctor from Harley Street') who helped fit your original SoClears, as I did actually spend a day with Nick fitting SoClears many years back and I do work just off Harley Street! Nick is great and he's always keen to try new lenses. Might be worth chatting with him about ICDs??

This is very much a personal opinion and by no means 'fact', but I am not a huge fan of INTACS. I have one patient who had them done in one eye and he is quite pleased with it, but still needed a rigid contact lens. All of my other patients who have had it were dissatisfied, and again still needed lenses. It's not a guaranteed quick fix, and from an optometrists perspective it's really difficult to make lenses fit an eye with implants! Anyway, do think long and hard about surgery, as there's no going back. Exhaust all your contact lens options first!

Best of luck,

Sophie

Hiya

I'm same age and same time with KC as yourself. INTACTS isn't a miracle cure and Crosslinking might not be the best option for people of our age. INTACTS didn't improve my vision but allowed me to wear lenses, as they previously popped out

I'm not sure if NICE approved these treatments on the NHS, but I got mine done on the NHS in Glasgow - maybe I was a guinea pig?!

Take it easy

C

oneeyedraz wrote:I need some serious sincere and experienced advise with regards to this:
1. Is it worth checking outside UK for Intacs/RX i.e. US/India?
2. Are there any PCTs in Lancashire or UK for the matter who do Intacs/RX on NHS?
3. Can anyone recommend any "reasonable" private clinics in Lancashire or UK?
4. Any recommendation of Medical Insurance or Pay Plans available for KC sufferers in UK?
5. Can I apply for any benefit if I decide to work on a part-time basis due to vison problems?
6. General Recovery time for both procedures mentioned?

The answers below are very basic, but I hope they help.

1) No guarentees that you will be able to get any medical back up if anything goes wrong wonce you are back in the Uk, plus in the US, the epithelium is left on and is far less effective at halting KC, so they usually combine CXL with other treatments so impossible to say exactly what has helped KC if it has at all.
2) Intacs are according to NICE available on the NHS so it is a case of does your consultant feel it is the best option, plus recovery can still be 12 to 18 months as in having a graft which is why I personally think many go straight to the graft.
3) Unable to help on this one from direct experience but i know many who recomend David Jory in London from their personal experience. Plus as far as CXL goes, he is one of the few UK opthalmologists that learnt the procedure directly from the people who pioneered this in Dresden, Germany.
4) Some help but as KC is a preexisting condition as far as I am aware all will exclude preexisting conditions from the policy.
5) This you are best discussing with RNIB, Action for the Blind or the Citizens Advice who have more expereince of the benefits system.
6) The rule of thumb as far as I am aware is that intacs, graft or CXl pretty much have a 12 - 18 month recvery until visiion has setled down. Inbetween times there are frequent prescrition changes.

One lens option you haven't mentioned is soft lenses for KC, I know many who were told they needed a graft because no other lens option worked so they went on the waiting list. During this time they pushed and pushed to try soft lenes for KC and found they actually worked and so took themselves off the waiting list and are still managing perfectly well with soft lenses with none of the issues you describe. From my own expereince soft lenses for KC work exceptionally well, I was told they wouldn't work for me but five years on I get better vision with the KErasoft IC lenses than I ever managed with an RGP lens, wear them all my waking hours with no comfort issues and in all weather conditions and ebvironments from hot and dry in some of the manufacturing sites to cold and dusty in other manufacturing sites with no issues at all.

Hi

Forgot to say my recovery from INTACTS was a few days. It was the antibiotic drops that they gave me that made my eye sore and red.

I was back to work the next week. We had prepared for longer and my partner took two weeks off work, but I was fine within the week

One thing that you may already have with KC is a halo. I previously got glare when driving at night. Now I get a very strange halo at night,near candles, at the cinema or in a night club. Basically I have to avoid a light source in the dark on my right eye (the one with the INTACS)

Hope this helps

C

Ladyburd wrote:Now I get a very strange halo at night,near candles, at the cinema or in a night club. Basically I have to avoid a light source in the dark on my right eye (the one with the INTACS)

This likely to be due to the large pupil size in these situations, so the pupil edge is close the the intact and what you are seeing is light reflecting off the intact.

Just adding a few points to the excellent responses here.

There is no easy answer to this. The cheapest option and best of a difficult situation would be just to go with CXL in both eyes, starting with the left. As has been said, there are NHS hospitals doing this now but its a case of getting PCT funding, which takes time. You appear to have a clock ticking here due to the simple fact there is NEVER a good time to get anything like this done. So one way round all of this would be to try and get CXL asap on the left eye and at the same time get referred to an NHS clinic for the right. By the time you get there, the left should be well on its way to stabilisation.

INTACs - I am with Sophie on this one. I have seen a few good results but they are outweighed by the cases where it made little difference.

You can get CXL cheaper abroad (Eastern Europe for example) but you do need follow up, so this is a decision you have to really think about hard.

Many refractive surgery clinics now do CXL as well and they do have payment plans, so worth investigating.

You need to know as well that your long term rigid CL wear will lengthen the time to stabilisation simply because your cornea has been moulded. CXL itself causes fluctuation in vision for a few months and if you are demoulding from long term contact lens wear as well, this makes it worse.

One way to manage this situation and still function visually is to change to a very thin, soft lens (such as a disposable) in the eye you are crosslinking first. Although the vision won't be brilliant, it does give you some binocular vision while your eye is settling. It can take around a couple of months though before your eye is recovered enough for CXL. However, it means you can get back into a soft lens a couple of weeks after CXL. Fairly soon after that, you can wear a specialist soft lens that will give you good vision. The vision changes will then not be as much as if you were undergoing corneal shape changes from the CXL plus the demoulding.

If all this seems very negative, the plus side is that once you get through the worst of the changes, vision does tend to get better after CXL. Studies have recorded improvements even 8 years post op. Wearing contact lenses is much easier as well.

This doesn't help you but for anyone else reading this thread, this sort of situation is a VERY good reason to look at CXL sooner than later.
Lynn

sophietw wrote:I presume you have been with Nick at Yates and Suddell? I've got a feeling it might have actually been me (the 'lady doctor from Harley Street') who helped fit your original SoClears, as I did actually spend a day with Nick fitting SoClears many years back and I do work just off Harley Street! Nick is great and he's always keen to try new lenses. Might be worth chatting with him about ICDs??

This is very much a personal opinion and by no means 'fact', but I am not a huge fan of INTACS. I have one patient who had them done in one eye and he is quite pleased with it, but still needed a rigid contact lens. All of my other patients who have had it were dissatisfied, and again still needed lenses. It's not a guaranteed quick fix, and from an optometrists perspective it's really difficult to make lenses fit an eye with implants! Anyway, do think long and hard about surgery, as there's no going back. Exhaust all your contact lens options first!

Hello Everyone,

Many thanks for the all great replies from each and everyone of you... a bit confused but overjoyed at the response. Sophie, it was you at the BCLA, its good to hear from you. I'm with Nigel now since Nick left.
I think the frustration first is with my Consultant, who thinks it perfectly OK just to wear lenses for 6 hours a day or face the consequences and nothing else!
My main concern at the moment is to get the neovascularization to recede. I'm doing this by wearing left 4-6 hours and then the right 4-6 hours so I get 10-12 hours of bearable half vision!
Any late night work is with the help of my wonky specs and a close stare on my 27" monitor. The method does have its headaches and eye-aches ..literally!!

I'm in the process of getting my GP to refer me to either Manchester Royal Eye or Sheffield Hallam. Nigel tells me Manchester has some progressive forward thinking doctors. Initially I just want a consultation.
ICD? Kerasoft IC? .. OK interesting something definitely to look into with my meeting with Nigel at Yates in about a weeks time.

Can anyone elaborate if Kerasoft IC is similar to No7 SoClear (Optimum Extra)?

Sophie ICD is bigger that SoClear?

All the best to everyone.. Happy SightSeeing

Its a small world...
Not only do I know you Sophie, but I just realized I have met and spoken to Lynn at BCLA Manchester as well!

Sophie what I meant to ask was with ICD is it better oxygen permeability than SoClear?
This issue of Neovascularization is due to lack of oxygen in the eye during waking hours?

All the best

Shiraz

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