Hey guys! I have been following this group for under a month since I had saved up enough to undergo a CXL treatment in GA, U.S. I was diagnosed with Keratoconus in my left eye as the worse and the condition light in my right eye as well (probably at astigmatism phase still). I work with computers constantly being in the marketing field. Age 29. I was diagnosed last year but they wanted me to be a research patient for the Epi-On treatment as Epi-Off wasn’t yet covered with insurance so we were skeptical. We were immediately contacted when the epi-off treatment started to be covered. I let my job know before hand that I would be undergoing the procedure and thankfully they were understanding to give me the days off I would need for the procedure and healing period.

Pre Op Exam: For the post Op exam I went through all of the devices that I was familiar with the previous year when I was diagnosed. A few of the machines where I had to look at a red dot in the center seemed ghosted and I had trouble following it (and keeping my focus on that dot) with my left eye. They had trouble getting proper readings of it. I was dialated and The surgeons aid came in and gave a list of prescriptions to have with me at the procedure the next day, went over questions we had and sent us off. We were told about the night guard goggles I would have while sleeping (not actually goggles but pieces of goggles that you have to have someone tape on your face.).

CXL Treatment (Wednesday) I was really scared and nervous and brought along two people with me to ease my stress. The first thing that was done is that I was separated from them and taken to a separate room where I was number in both eyes, while the surgeon removed the outer layer. This is the part I was nervous about and had to be brave for. I did feel discomfort because it seemed he put a ring around my eye to squeeze and plump it up before removing the outer layer. I felt discomfort because of the pressure. On my right eye (that he did first) I could see the film layer being removed (that part did not hurt at all) and felt like I may have removed it on my other eye by rubbing at some point throughout the year.
I took a bathroom break before they met me up with my gang and led me to the treatment room. I could still see normal and my vision was not blurred by the epi layer being removed. Once in the treatment room they put the roboflacin yellow drops on my eye every 10 minutes and then again when under the CXL light. The speculum ( the device that holds your eye open) was also a uncomfortable part inserting but it wasn’t unbearable, just annoying. I did blink my eyes during the procedure and my muscles were satisfied with the motion even though my eye was not able to close. This second half process was not uncomfortable at all. The speculum is just intimidating and annoying. About halfway I was taken to the other room to have the other eye epi layer removed. The same process was repeated for 30 mins on each eye and I was done. They gave me dark goggles and sent me in my way with a post op the next day.

First night (Wednesday night) I was told by all the doctors that this first night and second would be like...the worst days of my life. Told my gang that I may rock or punch walls etc and that I would be in great pain. I was subscribed opioids, numbing drops, eye drops, and antibiotic. The medicines cost me about $200-$300 total (rounding) OOP. I felt exhausted when I got home because of the entire ordeal and slept until the afternoon. Was given an opioid and the drops I needed for that hour. Guys- I did not feel any discomfort except for maybe like.... a little irritation like something was in my eye. (Bandage contact?) maybe I have a high pain tolerance idk. I slept for most of the day and throughout the night (I love to sleep so this didn’t bother me). I had to sleep with goggles and what looked like masking tape.. and it’s VERY TACKY. Don’t even try to clean it all off your face the first two days. I needed help for the routine drops and couldn’t keep my eyes open without help. And that’s it!

Second day (Thursday) Coming into the exam room was annoying the next day because my eyes were still sore/heavy and my vision was super SUPER BLURRY. Even more blurry than my regular vision. And they wanted me to try and read the eye chart. Really? I told the examiner to trust me that I couldn’t read ANYTHING. light sensitivity was off the charrs as well. The doctor had to hold my eyes open to make sure the bandage contact was in. I stopped taking the opioids this day because I had no pain and we had to return the numbing drops because of safety protocol.

Today (Sunday) The light sensitivity has eased up a lot but I’m still wearing the sun goggles given. I was told I can slee without the night guard goggles (thank goodness because they fell off the other night and I was afraid I had lost a bandage contact. They get so comfortable at times it’s hard to know if they are in or not. I was told I can come back to a follow up on Monday to take the bandage contacts lenses out and do another exam. Excited to get them out because sometimes I can feel them. Still on routine drops and I can watch movies with some blurry ness but I can see the movie. . Happy to answer questions.