Our Experience with Keratoconus and Corneal Collagen Crosslinking

Around 4 years ago, Jose went to go see an eye doctor because his perfect vision was not so perfect anymore and after it getting worse over time he figured it was time to get it checked out. What we thought would turn into a conversation about glasses or contacts, turned into something so much more. He was diagnosed with Keratoconus in his eyes and when we asked the doctor what that was, he replied with "Google It." I'm not joking. But we did what we were told and googled it when we got home, which led me to crying for about a week. Of course, like anything you look up on the internet, it gives you the worse case scenario of what could happen. Our worse case scenario was him going blind or even loosing his eyes (crazy, right?) which naturally freaked us out and next thing you know, I am a crying about him not be able to see our unborn children growing up because he will be blind and all the things he may miss out on seeing. He was in his mid 20's and still had so much to see and explore. But luckily we calmed down and thought it would be best to see a specialist since obviously we weren't going back to our previous doctor and found out that there is many alternatives to live with Keratoconus and everything would be OK.

Above is an example of what someone who has Keratoconus may see. A better description of it that I grabbed from National Keratoconus Foundation is:

Keratoconus, often abbreviated to "KC", is a non-inflammatory eye condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. This results in significant visual impairment.

So what was our options? At the time we were only aware of gas permeable contact lenses, intacs, or Corneal transplant. At the time and until recently we opted for the gas permeable contact lenses and Jose only wore one in the eye that he had the disease worse in. Basically because these contact lenses were such a pain to wear, he couldn't stand to wear them in both eyes, and it was completely understandable. Gas permeable contact lenses are nothing like soft contacts (which I wear), they are uncomfortable, irritating, and literally pop out all the time. I can't tell you how many we had to replace them, and they don't come cheap. Just blink the wrong way, POP, there it goes. His Keratoconus also hasn't progressed far enough where he would be a candidate for the other options.

Then one day something wonderful happened. We got an email saying that a doctor in Arizona is practicing the trial for Corneal Collagen Crosslinking with Riboflavin (CxL) and is accepting people to be part of the study. This is something that we started hearing about but it was only approved in Europe, Mexico, etc, and was not currently approved in USA and only a few were doing trial studies of it. We were ecstatic. Needless to say, we were in their office shortly after and signed up for it. Jose's procedure was scheduled for December 2nd, 2010... which happens to be today. He is actually asleep and recovering as I am writing this. It went great and I thought I would write this blog for other people who may be living with this disease and hopefully this will help give them hope and options.

So how does Collagen Crosslinking with Riboflavin (CxL) work?

This method works by increasing collagen crosslinking, which are the natural "anchors" within the cornea. These anchors are responsible for preventing the cornea from bulging out and becoming steep and irregular, consequence of advanced keratoconus. According to Cataract & Refractive Surgery Today, Collagen Cross Linking prevents further vision loss for over 95% of patients with 60% to 70% having improved vision. Most patients respond to one time treatment.

Here is our experience with it, and we aren't even a day in after getting it done. An hour before you have your appointment, he had to apply non-preservative sterile artificial tears in his eyes, to basically lube them up. Then the nurse applied more eye drops every few minutes that varied between Riboflavin, numbing drops, and more artificial tears. He was then taken in the back, more drops were applied, and then they applied the ultraviolet light to his eyes every 10 seconds or so for 30 minutes. Jose said it felt like he was staring straight into the sun without being able to squint or look awake. Obviously not his favorite part of the whole thing. After that he was sent home to sleep which is the best remedy for it. The few times he woke up, he did have intense burning which is normal and hopefully should subside within the next day or so. He also has to apply many different types of eye drops over the next few weeks. As we progress more with this, I will update you all and let you know how its going.

The goal with this, is that eventually he will be able to wear soft contacts to correct his vision or even better, get lasik and never have to wear anything again and this will all be behind us. Keep your fingers crossed for us!

Please check out the orginal post I made on my blog (http://www.aliciablogs.com/2010/12/keratoconus-corneal-collagen-crosslin...) where we will post updates and answer questions that get sent to us about this procedure, whereas this post on BlogHer isn't monitored as much..


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