CXL or NO CXL

[djain3]

Hello Friends,

I need advise.

My both eye have KC. R>>L

I got my CXL done on 24/10/2009 on right eye as it was the bad eye as suggested by doctor.

I also have KC in my left eye but currently it is minor. I have visited two doctors. One suggested CXL for both the eye and other suggested only for right eye. He said left eye progression is very minor and we will need to observe it.

When I asked why not CXL for both the eye in order to stop the progression in left eye(good eye) with immediate effect. He said we will observe left eye for sometime and will do pentacam after 6 month. If it is progressive then we will do the CXL as one of the important prerequisite for CXL is that it should be progressive.

I am little worried here. What if left it progress very fast in left eye. And since left eye is currently good eye why not get the CXL done in current situation to stop further progression

Also, since right eye is already bad and if left eye progress fast then I will have problem in my job.

Please give your kind advise.

PDF files attachment is not allowed here otherwise I could have attached my topography reports.

Many Thanks,
Deepak Jain

[Anne Klepacz]

Hi Deepak
My instinct in this situation would be to go with the advice of your 'cautious' doctor. For many people, KC doesn't progress very much at all in the 'good' eye. No procedure is totally risk free, and that includes CXL. So if it's currently very mild in the left eye and shows no sign of progressing, why do anything now? If the examination in 6 mths time does show progression, you can still go ahead then. And in the meantime, you'll have a better idea of the results for your right eye.
Anne

[djain3]

Hi Anne,

Thanks for your kind advise.

I am currently working with the 'cautious' docotor.

I was little tensed about my left eye.

Is there any option to upload the attachement in .pdf format in this forum? I wanted to upload my topography reports.

Thanks,
Deepak

[Lizb]

I have a similar situation, in that my right eye is my good working eye and left is the bad eye.

My consultant only recommended CXL in the left eye initially, with a view to reconsidering the right eye in six months time. if he is recommended a wait and see policy then he must be confident that the KC is still either very early stages, not progressing or has sufficient thickness to allow CXL if it does detoriate over the next 6 months. I can understand your concern about your good eye detoriating, however you are likely to know very quickly if the good eye deterioates quickly as it will affect your every day life. If this is the case you can go back to your doctor and point this out to him, and get on the list sooner.

Personally i am taking the recommendations of my consultant - he is trained and experienced and i do not want to undergo a procedure that has risks if it is not necessary. However if there is any sign of the KC progressing significantly in my good eye before my next appointment with him then i will be back for an appointment sooner rather than later.

[djain3]

Hi Lizb,

Thanks for you reply.

I was little concerned considering my career ..job

I work on computer for 9-10 hours each day..

And being IT guy eyes are very very important for career...

Regards,
Deepak

[Lizb]

i can understand you concern, however i am also tied to my computer and electronic maps for my job for 90% of the time, the rest i have to go out driving so i can not be without that level of vision.

Re computer work there are alot of software packages available to assist visually impaired people which can make your life easier and allow you to continue to work on a computer, even on a bad day. Get a larger computer screen if needed, i did and until i got it i didnt realise how much i was struggling on a smaller screen.

As long as you take regular breaks, use wetting drops, avoid rubbing your eyes etc then i would still say follow your doctors recommendations.

Think of it a different way, there are risks with the CXL procedure that could put your sight at risk (same as any procedure there are always risks), do you really want to undergo a procedure that as yet isnt proven as necessary for that eye. Dont forget that as yet we still dont know what the prognosis is 20-40 years time for eyes that have been CXLd.

How long ago were you diagnosed with KC in both your good and bad eyes? how quickly have they both progessed? how old are you?
It is reported that as we get older, the cornea tends to thicken by itself (not in everyone's case) so therefore your good eye may just slow/stop the KC on its own. Dont forget that KC wont always get to the same stage in both eyes at all.
My right eye only has very early KC diagnosed last year, my left eye was diagnosed 10-12 years ago and has progressed at a constant rate over those 10-12 years.

[djain3]

Hi Lizb,

I am 31 year old. I was diagnosed 2 years back for KC. It could be there earlier than 2 years.

I am follwing recommendation of my doctor and waiting and will get my left eye checked after 4-5 months time to see the progression.

Yes, I understand and agree that there are risk involved even with CXL.

Lets see what happens.

Thanks for your reply.

Regards,
Deepak

[Lynn White]

Liz

Just a point... although the cornea IS supposed to stiffen with age, there are reports of people who START with KC in middle age which is contrary to all the perceived wisdom. So although I agree totally with what you say about not knowing what would happen in 20 years, it is giving people a false sense of security if we say KC is less likely to occur in older people.

KC is such a frustrating condition!

Lynn

[djain3]

I agree with Lynn.

My doctor is treating a patient who was diagnosed KC in age of 44 and one in age of 58

We can only pray for ourselves.

Regards,
Deepak