UK Keratoconus Self-Help and Support Association

Hi All,

I have just been diagnose with Keratoconus. Dejected and not sure what to do. Do they have any cure for this. Please Help?

By keratometric do you mean the results of a corneal topography? this creates a coloured picture of your cornea, showing the shape of it, the position off your cone, and helps contact lens fitters to get a close fit. I think blue areas are flatter and red are more steeply curved, but someone please correct me if im wrong. this will give about idea of how the KC has progressed in each eye. you can also have corneal thickness measurements in microns to confirm how thin your cornea has become. there is no cure and its considered a degenerative condition, however there are lots of treatment options from contact lenses to intacs to cross linking. most people never need a corneal graft. hope this helps

Thanks For the reply Jake.

Yup it is the results from an Orbscan.
What does Intacs and cross linking does.
I have read some review's that Intacs and cross-linking does improve vision.
If I go for Intacs and crosslinking will it improve my vision.
I don't have any problem with my left eye its only right.
The ophthalmologist gave me a drop Pataday to use until the next review which is in 6 months time.
I am not wearing any glasses at the moment.

Summary of the Orbscan as below :-

Left Eye
Sim K's astig = -1.0D
Pupil Diameter (mm) = 3.3
Thinnest = 501um

Right Eye
Sim K's Astig = -6.9D
Pupil Diameter (mm) = 3.4
Thinnest = 499um

Thanks.

Hi there thiban

Very briefly, Crosslinking aims to stabilise the cornea which is being affected by the Keratoconus disease process. The theory behind it is that by accelerating a phenomena which is thought to occur naturally -- UV light from sunlight which we are exposed to in small doses (very small at this dull time of year !) is believed to naturally "stiffen" the cornea over time. It does this by interacting with a chemical called riboflavin. Crosslinking is intended to simulate 10-20 years of this exposure in about half an hour or so.

Once the cornea is "solidified" (I'm using approximate terms here) the rigid segments of a plastic material can then be implanted into the cornea to improve its shape. These "Intacs" (which is actually a brand-name -- other types of implantable lens are also used) can be inserted without having the Crosslinking done but the outcomes have been, historically, very variable. It is assumed by clinicians that a combination of Crosslinking with Intacs will give a more reliable result for the patient with longer term stability.

So, definitely worth considering but keep in mind that long term evidence for the safety and effectiveness of these newer treatments for Keratoconus is still emerging, if you're interested in following up these options it's best to find an ophthalmologist you can trust and be guided by what they say. For me, the key piece of information is how much corneal thickness you're losing (if any) over a 6- or 12-month timeframe. In the data you've provided in your post just now, this is determined by the corneal thickness measurement. For you, it's around 500 microns in each eye (give or take a bit). It's worth getting another set of scans done in maybe 6 months and finding out if these readings are stable or declining. And If they're declining, by how much. If they're stable, then the risks vs. the benefits of a treatment such as Crosslinking have to be carefully weighed. If they're reducing (i.e. you're losing corneal thickness) then it's a bit easier to decide especially if you're losing corneal thickness at a rate which indicates more aggressive Keratoconus. I'd be a little dubious of feeling bounced into a treatment based on a single set of scans from a specific point in time. It sounds from what you've said that a good approach is being taken by your consultant -- get some measurements now and have a review in 6 months and go from there.

But please do take away from all this that there are things which can be done. Even if it isn't surgery, there's now a much better choice of contact lenses available for Keratoconus and you might find initially that's the most appropriate method for managing your condition.

Best wishes,

Chris

Thanks for you taughts Chris.

I have been given this Pataday drop have you heard of this, I read a couple of bad reviews on this.

The doc also ask me to take this pills Surbex with Zinc from Abbot.

Should i get a second review before going for the drops and pills.

Hi, sorry, I've no experience with any of the medication you mention. Hopefully someone will know a bit more about them than I do ...

Generally, it's worth following clinical advice rather than what non-experts might tell you (however well meaning !). The clinician has the advantage of having you there in front of them. With the best will in the world, even the most esteemed authority on the subject won't be able to give definitive advice without actually examining you.

Do you have any specific worries about what you've been prescribed ?

Chris