My name is Kyle Winterstein and I created this page for the purpose of educating, tracking my experiences and providing a visual reference of my condition, Advanced Progression Keratoconus.
Keratoconus is a degenerative disorder of the eye in which structural changes within the cornea cause it to thin and change to a more conical shape than the more normal gradual curve. The cells of the mylan sheathing of the cornea do not regenerate how they are supposed to. This causes multiple uneven surfaces on the cornea. So instead of being round and smooth, it becomes slightly coned and almost dimpled like a golf ball in some cases. This in turn, creates multiple refractions of light, instead of one image. Keratoconus can cause substantial distortion of vision, with multiple images, streaking and sensitivity to light.
I was diagnosed in March of 2013. I had noticed for the past few months that something was up with my vision, so I figured I would get Lasik. At the time my band, Digital Summer, had singles on the radio and was doing quite well. I used this to gain an endorsement opportunity with Nationwide Vision. I was going to get free Lasik corrective surgery in exchange for letting them film everything for internet marketing campaigns and I would also do a few radio commercials promoting the company. During the initial testing phase the Doctor with Nationwide came to me and stated that based on the test results I was unfortunately not a candidate for Lasik. The Doctor also told me I had a degenerative eye disease called Keratoconus and that there was a high probability I would be blind within 2 years. I was then referred to Horizon Eye Specialists.
A few weeks later I had an appointment at Horizon Eye Specialists. They ran some tests and confirmed the diagnosis of Advanced Keratoconus. I was seen by Dr. Robert McCulloch, who explained the disease and told me:
"At this point, you don't have many options.
1. You can get corneal transplants, which will have a varying success rate with your condition, long healing time and you would be limited on activities and lifestyle. Even if it was successful, most likely you could no longer be a Firefighter.
2. We can try to fit you with gas permeable hard contact lenses. It will help your vision, but they're very uncomfortable and will likely need constant prescription updating as your vision gets worse."
I opted for the hard contacts and they ran more tests. Glasses offered only very slight visual improvement with my condition.
I spent about a year struggling with gas permeable rigid contact lenses. Dr. McCulloch had a difficult time sizing lenses correctly for me. I went through at least 6 different sized lenses over the course of 10 months before he stated "Well that's as good as we can get it". Sad to say, it wasn't nearly good enough. They were painful, not uncomfortable... painful. The also didn't actually help my vision, they just changed the type of distortion I was seeing. This was something the Doctor seemed to have a hard time understanding.
Roughly 13 months after my diagnosis, the first positive news surfaced. Thanks to the tireless research efforts of my amazing wife Ashley, I learned about a non-FDA approved procedure called Corneal Cross-linking that had been proven to slow or even stop the progression of Keratoconus in patients all over other parts of the world. In short they basically put Riboflavin (concentrated B2 vitamins) in your eye and then it's activated by UV light for roughly 30 mins. After looking into several options for this procedure that were available in other countries I just happen to stumble across a news article about how 13 practices in the U.S. were just starting clinical trials for CXL (corneal cross-linking). Fortunately for me, one of them was in Scottsdale, AZ. I immediately contacted Schwartz Laser Eye Center and was quickly scheduled for my consult with Dr. Schwartz.
The procedure was outpatient and fairly easy. My eyes were irritated for a few days and my vision was a bit blurry, but overall it wasn't so bad. I returned to Schwartz Laser Eye Center for my follow-ups at 3 days, 2 weeks, 1 month, 3 months, 6 months and 9 months. Each time I saw Dr. Bloomenstein, who seemed well educated and very straight forward but was by no means a Keratoconus specialist. Each visit included eye exams and a questionnaire I had to fill out as a participant in the clinical trial.
9 months passed and I was officially done with the CXL clinical trial. At this point my vision was exactly the same as before the CXL procedure (very bad), but test had shown that my corneal thickness had improved significantly and the progression had, at minimum, slowed down tremendously. I was then seeing Dr. Kristi Rhodes at Schwartz Laser Eye Center and attempting to find a type of contact that might help improve my vision. Based on the nature on Keratoconus and the details of my specific variation of the disease, glasses offered zero visual improvement for me now.