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I am married and live in Tucson, AZ. I love to blog about food, traveling, shopping, local businesses and more. I created my blog to show great food,...
 
 
 
 

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Our Experience with Keratoconus and Corneal Collagen Crosslinking

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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

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AliciaBlogs 5 pts

Sorry for the long reply on this, I posted this on BlogHer awhile back (and also on my personal blog aliciablogs.com) and haven't checked back here on comments. For sure see my post on my blog http://www.aliciablogs.com/2010/12/keratoconus-cor... ( http://www.aliciablogs.com/2010/12/keratoconus-cor... ) since I will be posting updates on there.

Yup, they recently just started doing it at Schwartz Eye Center around October, I believe. They usually schedule the follow-up appointments after your procedure and they are very quick and timely. He just basically looks at your eyes to make sure there are no issues and also check to see if there has been any changes. We have only gone to the 1 week followup and have the 1 month on Jan 13th which they will do more testing at that point, and I will be sure to post how it went on my blog.

My husband returned to work 4 days later but he said he could of returned to work sooner. Since he works outside, he just wanted to be safe because you want to keep your eyes from getting any objects in it after the procedure and we live where there is a lot of dust and wind.

The cost of the treatment was $2500 per eye, but they also accept Care Credit which will over everything and you can pay that back within 2 years without insurance.

Hope that answers your questions!

blueiislook2sky 5 pts

Thank you for posting your blog on this! I have keratoconus as well and was about to go to CA for the treatment until now. It must have been just recently they opened this up in AZ. Is this the Schwartz Eye Center? What is his follow up appointment schedule like? How soon till he can return to work? Most importantly, since this is not insurance covered, what was the cost of the treatment? It will save me so much in travel expenses to be able to do this here, thank you so much!