Hi I am Lisa from Newfoundland, Canada.
I always had trouble with my eyes. Back when I was 2 I had eye surgery for a turn in my eyes. From then till I was 28 I was getting my glasses changed on a yearly basis. Then in 2004 my eye Doctor said my corneas seem a little cone shaped. I didn’t want to accept that there was something else wrong with my eyes. So I ignored it and changed eye doctors and I didn’t like her bedside manner or shall I say lack of. Never went back to an eye Doctor until in 2006 when he said my turn in my eye had now caused me to have ‘lazy eye’ as I couldn’t see the eye chart at all with it even with correction. This went on until 2010 when I went for another check up and the best he could make my good eye was 20/40 with glasses.
He was stumped by that and said ‘I want to do another test on you’. So he did and said then ‘I am going to send you to a eye surgeon as I think you have an eye disease called keratoconus’. Had to wait til may 2011 to see that Doctor and when I did they did a lot of testing on my eyes and said ‘yes you do have keratoconus’ and ‘sometimes it stops progressing so come back in 9 months and see how things are’.
In the 9 months between visits I began to get daily headaches and shadows in my vision got worse. When I went back in Feb. 2012 and they did the testing again and said ‘yes it has progressed’ and said I would need corneal cross linking in both eyes and after it healed I would need RGP contacts. But he said he doesn’t do cxl so he sent me to another surgeon. I had to wait six weeks to see that one. When I did he said yes you have advanced keratoconus in both eyes, and I was just at the cut off point for cxl collagen cross linking. I had the cxl collagen cross linking with PRK in June 2012. I ended up having complications from it such as severe hazing and delayed healing.
By the end of September most of the hazing was gone and I was then able to go and get fitted for the RGP contacts. That was an adventure in itself. I have had lots of retweaking of my lenses in the past six months. My fitter is still not happy with the fit as they are riding a bit low on my eye. But the vision with them is 20/30 and if I wear glasses it’s 20/80 – so a big difference.
I go back for my yearly check up in June – hopefully there is no more progression!
One thought on “Keratoconus my story by Lisa”
Thanks for sharing! I had bilateral CXL and lots of problems with doctors too, but my KC developed and went crazy within less than 1.5 yrs. I also had acquired amblyopia (sometime called a lazy eye) as my brain shut-off the vision to my worse eye, too. That was my 1st misdiagnosis! I was at the moderate stage when I had the CXL (9 mos after I noticed symptoms) and have had post-op issues and am lens intolerant, so bad vision, but better than before CXL. Glad you were just before the cut-off and we sure are lucky CXL is available.
Alisa (in the US) 🙂