Postby Lizb » Mon 07 Sep 2009 1:11 pm
Whereabouts are you from? you mention about " seeing a consultant, at huge expense". In the UK we are lucky (or not depending on your view point) to get KC appointments through the NHS, so the advice that Andrew has given is applicable to the NHS rather than any other system. Some of us do go private for treatments as some are very new on the market so to speak.
It is probably a good sign that you optician wants you to specific person, as I have had appointments within my local hospital eye clinic with doctors that dont know the first thing about KC - I know more about it than them which is a bit scary. So by your optician wanting you to see a specific person he probably has a good understanding of KC.
Some questions to consider are;
1. How advanced is the KC?
2. What is the consultants knowledge/experience of the condition and treatments? - especially if you are paying for the service
3. What treatments are available and suitable for your son? some newer ones in the UK are Intacs and Crosslinking/CXL (still at trial stages on the NHS), along with the traditional contact lenses for sight. A lot of people manage with different types of contact lenses all their life, others can not cope with CL at all, others go past the stage of being able to wear CL and require a graft (usually a lot later in life mind you), others manage to cope with glasses all their life
4. Is there a likely progression and what speed? this may be a question for later in the treatment, when the consultant has seen your son over a period of time as each person generally progresses at different rates - it is called a bespoke condition by a lot of people because what applies to one person wont apply to the next.
5. Is it in both eyes or just one at the moment? (as i understand it, KC usually develops in both eye - 12 years on it has only just started developing in my second eye)
Read some of the literature that is available and take it with you, both on this website and on the web in general. Some of that will answer some questions but it may also generate more questions for you as well.
At the moment there is no "cure" for KC, but as mentioned above some people manage perfectly well all their lives with glasses or contact lenses (i personally am managing with glasses as the KC has only just developed in my right eye at late 20s, left eye was diagnosed with KC about 10-12 years ago and i can not get a comfortable fit in contact lenses). Others end up requiring a graft (later in life is more normal for this).
Intacs is a couple of pieces of plastic inserted in the cornea that helps smooth the cornea out to enable easier fitting of contact lenses or glasses. Intacs are available at a limited number of locations on the NHS in the UK.
CXL is a relatively new procedure (still at the trail stage on the NHS, but available privately in the UK) which is meant to slow/stop the progression of KC.
Both of these procedures have their limits and will not cure KC/improve vision on their own, but may assist in being able to manage with glasses or a more comfortable fit with contact lenses.
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I have since spoken to another opticion who said from what I related that it is probable he has this condition and to get as much information as I can before the appointment.
