UK Keratoconus Self-Help and Support Association

Just in short: I had CXL done in my left eye about a year ago, went from 0.6 corrected vision capacity to 0.1 with glasses. I am about to se a lens specialist this friday to get his opinion. I could not tolerate hard lenses 10 years ago which was the last time i tried them. Today is one year post op and earlier I have gotten no explanation why my vision has gotten so much worse.

Today I had a second opinion from my usual doctor. Her hospital do not do CXL at the moment although a study is ongoing to see wether this procedure is safe or not. This is why i was sent to another region hospital to get the treatment.
However my doc looked at me today and could se some haze and also some cloudiness ( She described this looked the same as on persons post op LASIK). She could not explain why this was the situation a year after the procedure and had not seen this is her trial patients so far. Also the cornea was a bit thinner according to the orbscan pictures pre and post op. Should`nt the cornea become thicker post op? She also had me look into a "needle hole" and was quite sure that my visual problems are related to my cornea cause i could see better thru the hole. Astigmatism has increased from 3,5 to 4,5.

I also asked her if the other doctor was right treating me with CXL since i was then 33 years of age and my vision / KC had not progressed that much in latest years (I was diagnosed with KC 15 years ago). She said to me that she would not have done it because of my age, current KC progression was absent and that I could see as good as 0,6 with glasses.But would not judge other doctors. So the question is as follows....
1) Have the CXL treating doctor made mistake, or even worse have he acted in the wrong way with bad judgement putting me in this situation. What could be the risks of treating patients that not are included in the criterias "suitable for CXL?
2) My ordinary doctor wanted to see me in another six months ( 18 months post op) to se if haze and cloudiness would disappear. She could not tell if the thinner cornea, minimal haze and cloudiness would affect my vision. But she also said that there would be foolish to take a chance doing a transplant in that eye more time would do the trick. What do you guys think. Is it possible for haze and cloudiness of cornea to disappear with more time? Whats is more likely that this come from the KC it self or from CXL?

Lynn or some other competent person I am eager for your response..

Hi Grim,

Right, at last you have now got more information.

First: Your treating doctor has NOT done the wrong thing by doing CXL at your age.

The theory that keratoconus stops in the 30's is certainly not inversely true as many patients can start progressing at this age. Even if you are not actively progressing,the cornea is often far from stable in your 30s and CXL usually stabilises the condition and improves vision even in older patients, I have seen patients improve in their late 40s with CXL.

Second: Thinner cornea. This is actually not at all unusual, Corneas can lose thickness then regain it after CXL but this can be up to 3 years later, so this is nothing to worry about.

Third: you see 0.6 with glasses which isn't too bad and can get better vision through a pinhole which, together with the increase astigmatism, probably means you could get better vision optically - perhaps with contact lenses.

Did she give you a glasses prescription better than the one you have? Has she offered to try other contact lenses?

I agree with her entirely that a graft at this point would be premature. You seem to have the potential for better vision and grafting can lead to problems of its own.

My advice would certainly to look at all contact lens types now to try and improve your vision. if it couldn't be improved, the vision would have been just as bad through the pinhole.
Lynn

Lynn, I probably was lousy in my way of writing. ( Sorry I am swedish )
The thing is prior to CXL i could see 0.6 with glasses and now a year after CXL i can see only 0.1 with glasses (This is with best visual correction by glasses) . The astigmatism has gotten a little bit worse (3,5 -> 4,5) after treatment, I also have some haze and "cloudiness" as she put in in my cornea which was not there prior to CXL. Could this be the reasons for my impaired vision? Are there hope even after 1 year post op that these things could resolve with more time?

Frankly as I see it the CXL has done nothing good for me, but maby I am just unlucky as usual.

My doc mentioned today that the pinhole was an indication that the impaired vision was caused by the cornea and not the lens or some other things in the eye.

Lynn, I probably was lousy in my way of writing. ( Sorry I am swedish )
The thing is prior to CXL i could see 0.6 with glasses and now a year after CXL i can see only 0.1 with glasses (This is with best visual correction by glasses) . The astigmatism has gotten a little bit worse (3,5 -> 4,5) after treatment, I also have some haze and "cloudiness" as she put in in my cornea which was not there prior to CXL. Could this be the reasons for my impaired vision? Are there hope even after 1 year post op that these things could resolve with more time?

Frankly as I see it the CXL has done nothing good for me, but maby I am just unlucky as usual.

My doc mentioned today that the pinhole was an indication that the impaired vision was caused by the cornea and not the lens or some other things in the eye.

Hi Grim,

Ahh right, I understand now. this does point up the difficulty of trying to advise via a forum!

You are seeing a lens fitter soon, I think you said? Hopefully you will get some answers at that appointment.

You are probably unlucky in that your CXL did not go as planned for some reason but again, this is entirely difficult to explain working purely at a distance on a forum. It does not mean that the procedure itself is not successful nor does it mean that the original doctor was wrong in what he did.

Certainly, what you experienced is not something that commonly happens, so, really, you do have to get answers from professionals you can actually visit.

I hope you get some positive news from your contact lens fitter.

Lynn

Can a moderator merge the two threads?

Good idea and done.