New KC diagnosis

[Iain]

Hi all,

I have just recently been diagnosed with KC in my right eye and am trying to explore my options.

I am 28 years old and first noticed a problem with the vision in my right eye approximately 5 years ago. Over time, the vision in my right eye has become gradually worse to the point where I finally decided to have it checked by an optician. I was shocked when I was told that I had KC and have been left pretty dismayed by the lack of options put to me by the NHS.

I was referred to the NHS through my GP and had a rigid lens fitted about 3 months ago. The lens makes a positive impact on my vision but it is still blurry and I am really concerned that should my left eye develop in the same manner, as it has already shown signs it will, I will be left with a very poor level of vision. This will seriously impact my job and although I maintain 20/20 vision in my left eye, which compensates for my right eye, it is has me worried beyond belief.

The general reaction I got from the NHS was "You have one good eye, the lens is working a bit, call us if your really struggling", its left me feeling as though there is nothing more they can do for me just now and they have said as much when I prompted them on this,

I have always had good vision and I am struggling to come to terms with the diagnosis. I have found the forum to be a great source of information on possible treatments for KC and I am fortunate enough to be in a position where I can opt for private treatment..... I just don't know where to start.

I have read about cross linking, grafts and transplants but I don't really understand the success rate of these treatments, the recovery period or how long the treatments will last. I live on the west coast of Scotland and don't even know whether there is facilities near that can help. I keep asking myself whether I will ever have good vision again, how will my KC develop and whether any of these treatments can correct the problem indefinately.

Any advice or comments would be appreciated,

Yours aye,

Iain

[Andrew MacLean]

Iain

Welcome to the forum.

I am sorry that you are having these troubles. I think that one member of the professional's group once described keratoconus as a 'designer' disease of the eye. Every time it appears it is unique!

Like you, I live in the West of Scotland. I attend Gartnavel Hospital where I have had two cornea grafts (one in each eye) and where I also have my contact lens prescribed and dispensed. I wear a lens on top of my left eye graft, but the vision in my right eye is corrected by glasses. This arrangement works well for me.

My keratoconus was stable for thirty years before I needed my first graft. During that time I wore contact lenses of various sorts in both eyes.

I do know that Gartnavel offers INTACS surgery, but that Crosslinking is not yet available there. The consultant Ophthalmologist who performed both of my grafts is a little hesitant about CXL because the anecdotal evidence of the success of this procedure is confused: it is entirely possible that some, many, most or all of the people who report that their condition has stabilized following CXL would have been stable even without the intervention, and the possibility also remains that they will progress in their condition after a long spell of stability.

Crosslinking is being trialed in different parts of the UK and is available to people who can afford to pay for private treatment, or who have insurance that covers the procedure. There was a time when I used to say that if crosslinking had been available at a time when it would have been of use to me, I'd have jumped at the opportunity. Now I am less sanguine of its benefits.

All the best.

Andrew

[Anne Klepacz]

Hi Iain - just to add that our last conference in 2007 covered all the various options available for KC, including crosslinking, Intacs and all the different contact lenses that can be used. If you'd like a copy, just e-mail or PM me your postal address, and I'll send you a copy.
anne@keratoconus-group.org.uk
All the best
Anne

[pepepepe]

Iain,

Get a consultation from a medical consultant, opthamologist "in the know" will discuss with you all the options available and treat you privately after tests on your cornea if the best option for you is not available on the NHS.

Pepe

[aliadam77]

Hi
I had never heard of KC before i was diagnosed with it, so am glad to have found this forum for help and advice.

I had a full thickness cornea graft in 1995 and then had lasik on top of the graft so my vision is now really good in this eye (right).
It has only been in the past year that my other eye has started to deteriorate rapidly to such an extent that I am now awaiting a graft for this eye.
The surgeon was hoping not to have to do a full thickness graft this time but now I have developed a hydrops making this impossible.
I though that after such a long time the KC wasn't going to progress in my left eye but you just never know!

I also live on the west coast of scotland and have always found my consultants to be really helpful, it must just depend on the doctor you get allocated!

Hopefully I will be allocated graft material in the new year!

alison

[rosemary johnson]

hallo and welcome to Iain and Alison
Iain, it sounds as if there have only tried one type of contact lens - is this right? - I'm guessing the corneal lenses - about 8mm diameter, made of some rigid gas permeable polymer?
It might be that you'd get on a bit better with one of the other types of lenses available - is it possible to ask about these?
You might also ask about intacs, CXL or both - which would mean a medical consultant rather than a contact lens fitter (thogh some of the latter do know a fair bit and can give an other perspective, in my experience!)
Obviously, no-one here has looked closely at your eyes so we can't tell whether either or both would be possible.
Good lucka nd do keep in touch.
And good luck with the graft, Alison.
Rosmeary

[Andrew MacLean]

aliadam77

Welcome to the forum

It is really good to have so many people from Scotland posting here. Next year's KC conference is coming to Glasgow as a celebration of something or other and the Scottish Group has fairly regular meetings.

All the best.

Andrew

[Iain]

Thanks for all your comments, as I've already said, the forum has given me a lot of information and this is helped me out so much.

I was referred to the Contact Lens clinic at Gartnavel Hospital, Glasgow and this is where I have had my lens fitted. I've no complaints about the treatment or staff, I am just not happy that it has corrected my vision to a sufficient degree, hence why I am looking into other possibilities.

Rosemary - I think I have only tried one type of lens, I'm not sure but in my naiviety, I know I haven't asked enough questions about other options or lenses. At my last appointment, I made the point that my vision was still poor in my right eye (even with the lens) and should my left eye develop in the same way, then I am going to be in serious trouble. I asked what else they could suggest and was told that whilst they understand my problem, it is impossible to predict how it will develop. I understand this to be correct but I've been left with the impression that in their opinion, the vision in my right eye is 'sufficent' for now.

I've set up an appointment with my GP to get the ball rolling for private treatment as I see this as the best way forward. As everyone has come back to me and said, there are clearly options available for me to explore and this gives me alot of comfort, but until I see an opthamologist (cheers pepe) who can examine my eye, I don't think I'll know exactly what ones are available or best suited for me.

Thanks again for all your comments, they are really helpful.

Anne - thank you kindly for your offer, I have sent you an email in regards to it.

All the best,

Iain

[Lynn White]

Hi Iain,

There are a lot of options for keratoconus nowadays - which is refreshing as for many years there were only a limited few ways one could go.

Andrew says that his ophthalmologist thinks that CXL is of doubtful use as it is questionable whether patients would have progressed or not in the current studies available. I don't often contradict Andrew, as he is a wise beyond years, but I have actually been following CXL patients post op and can confirm that people who were previously progressing rapidly have slowed, stopped and reversed even in severity.

Its not a simple option though. The process disrupts corneal integrity and for at least 6 months, vision is very variable. If you have KC in both eyes, one worse than the other, then if you have CXL done on both eyes there is a cross over point where vision is not good or stable in either eye and one has to be prepared for that.

There are other contact lens options than just RGP. There are also various RGP lens options. I would also take a wild stab in the dark and say if you get variable vision with RGP lenses then you might just have a variant of KC called PMD, as this often results in poor vision with most contact lens types. (PMD means that the steeper part of your cornea is nearer the edge rather than being central.)

Good luck with your private appt and let us know how you go on.

Lynn

[rosemary johnson]

Errrrm, Lynn......
I think Andrew was saying that was his consultant's view. Not that Andrew was of that opinion himself.
Rosemary