headaches and KC

[corky]

went for my apointment today and asked was there any other types of lens i can wear,i didnt mention the different names but the doctor told me the only lens i can wear is the hard rgp.she said its the only one that will work with my KC.the one i had before and gave up on it.has anyone else been told this or does my doctor know enough about KC.good news is the KC eye has stabilised and probably wont get any worse

[GrandPaClanger]

Hi

One would hope that your doctor knows enough about KC.  No one here can answer the question are RGP the only lens you can wear. Not even Lynn as she can't examine you. 

When I was having issues with a RGP I found out that the newer KC specialist lenses would not work because my cornea was to steep. I tried piggy backing ( soft lens & RGP) but that did not work as my epithelium  ( the outer layer of the cornea) was to thin and unstable. The factors that need to be addressed in deciding what type of lens to wear are vision, comfort, wear time and the long term effects on the cornea such as oxygen supply ( or lack of, which can cause issue with blood vessels growing into the cornea making grafting more risky). Options such as intacs can help but it's only done if the cornea is thick enough and strong enough to contain them. 

Looking back through your post you don't mention your age or how advanced the KC is. The reason I mention that is KC can stop progressing as you pass the 40 mark so things like cross linking have no or limited benefit.

Which hospital do you go to ?. I would be asking the questions A)am I being offered RGP because it is the best/only  option for my circumstances or B) am I being offered RGP because the hospital has  a small eye department with limited exposure to KC and a limited set of lenses to try. If it's B then go back to your GP and ask for a referral to a larger hospital.  I know it's not easy to ask questions at the time as you feel awkward and under time pressure. I would say write your questions down before you go. I would also take a friend or relative for support ideally someone who can testify how much KC is effecting your quality of life. 

I don't claim to be an expert on KC and I am certainly not medically trained. My issues over the last 18 months (been wearing RGP's for 30 years) did however force me do a lot of research  into how KC physically   effects the cornea and possible lens types and other treatments.  I found this invaluable when dealing with the "professionals". Not to be smart  or clever but to be able to ask questions and not be fobbed of. For example in November I had an appointment at the hospital with a doctor. He wanted me to come back to see the top cornea specialst to talk about "fitting intacts". I had learnt enough about the treatment and my condition to know that there were several strong indicators to it not working. It was at that point that I knew I was being fobbed off and not talking to the right person (this is a major eye hospital) I was not prepared to wait till January for another appointment and went to see the said consultant privately. He said within minutes that I needed a graft. I thus saved 6 weeks on getting a treatment plan and 6 weeks of suffering . I appreciate that not everyone can afford to go privately. We had to cut back for a couple of months but I had reached the point that I needed answers because of how KC was effecting not only  my quality of life but that of my wife who had to put up with me being Ill and stressed. 

I am sure you'll get there the more appointments you have the more you learn to fight your own corner 

Ian

[Lynn White]

Hi Corky,

Ian is quite right, I can't say whether only RGPs will work for you or not, as I can't examine you. However, what I can say is that if your KC has stabilised, then there is a possibility of other lens types working. This is still certainly worth exploring as you have been offered a lens type that you can't wear.

Its also worth considering what is meant by the term "the only lens that will work for you".

If by this, it is meant that this is the only lens that will give you vision on the bottom line of the chart, that may well be true. But if another lens type gave you one or 2 lines less but otherwise gave you vision all day because you could actually wear it, then you might actually be fine with that. especially if it reduced your headaches.

There are very many other types of lenses available and it is always worth getting a second opinion, so that you are settled in your own mind that you have tried everything.

Lynn

[corky]

hi ian you asked about my age and how advanced my KC is.im 35 an dont know exactly how advanced it is .i can only read the first 2 lines on the chart.while at the clinic yesterday the doctor couldnt understand why i was getting headaches and sore eyes in the last few months so she gave me a weeks course of eye drops thinking there might be an infection.dont think they will stop the headaches though.so have to go back next week again .an as you said the more appointments i get the more ill learn to fight my corner.