what are my options?

[danieljdavies]

hi,

As i have recently been diagnosed with KC i am unsure about the treatment options. I have been told I cant have contacts because of the shape of my eye. My KC isnt really advanced, but its past the early stages. Im 29 years old and have been diagnosed for under 2 years.

If someone could advise me of what the hospital specialist is likely to do? or would i need to go private if my condition isnt deemed too advanced enough??
Any info on treatments would be great


thanks

dan

[Lynn White]

Hi Daniel,

I an optometrist and contact lens fitter specialising in keratoconus.

Treatment and management are two different things. The NHS,on the whole, manages the condition with contact lenses.Keratoconus usually only progresses actively for 10 years and then stabilises, but that is not universal for all. Indeed, because the condition is not always diagnosed in the early stages, it can be difficult to pin down how long any individual has been keratoconic.

Treatments for keratoconus lie mainly in the private sector. These are mainly corneal collagen crosslinking (CXL) and INTACs.

CXL: This treatment was developed in Germany around 15 years ago and relies on soaking your cornea through with Riboflavin drops for half an hour and then exposing your eye to ultraviolet light for another half an hour. This procedure then starts up a chemical reaction that results in strengthening of the corneal fibres. The aim of this procedure is to stop progression of the condition. It does not aim to give you back vision. However, many people do find an improvement in vision, often over a period of up to 3 or more years.

INTACs are semi circular rings inserted into the cornea to try and improve corneal shape. If you cannot wear contact lenses, this is an alternative option but to be of any long term use, it should be used in conjunction with cross linking, as otherwise the effects can be negated by continuing progression.

Neither of these treatment options are routinely available on the NHS. Some hospitals are running trials and a very small number are offering these as an option. It is difficult to find out which ones do, as it is often dependent on funding ability and treatment options are constantly under review.

As you said in a previous post that contact lenses had been tried before unsuccessfully, there may be not much more the specialist will do other than reassess your condition and send you again for CL trials.

There are a few other options available privately but these all have quite short follow up times as far as side effects and long term effectivity.

On the contact lens front, there is a list of contact lens practitioners here on the website http://www.keratoconus-group.org.uk/optoms/index.php who have a range of specialities. They have more experience than the average practitioner is dealing with keratoconus and may be able to sort out your symptoms better with spectacles.

Headaches can often be the result of an imbalance in the way you see things with each eye and this is very common in people with keratoconus.

If you have any more questions, do not hesitate to ask.

Lynn