I'm glad I've found this site! I've been wanting to share my story about having keratoconus, not only to get some frustration off my mind, but also to relate to others who are suffering from the same disease and hopefully help those who are going through the same trials.
I guess I'll start off with who I am. I live in Canada, and grew up as a pretty active kid. I was a passionate baseball player growing up from the time I was 7 and for the next 11 years. My position was pitcher, and to toot my own horn...I was pretty darn good! I even got to throw for a scout for the Seattle Mariners who expressed interest! Things were looking good.
Then I hit 18 years of age, and everything started to change. I didn't notice it right away, but I started to lose focus on the catchers mitt. Depth perception started to be an issue, and my pitches became more wild. I became frustrated with my sport, and eventually quit. It was quite depressing. I didn't know I had keratoconus until about my third year in university.
It really started when I was struggling with lecture hall presentations. If I wasn't sitting at the very front of the class and squinting, I couldn't focus on what was being taught. I went to an ""eye doctor"" in the local mall. He basically told me ""You're blind in your right eye"" and left it at that. No explanation, nothing. I left feeling pretty anxious as one would, knowing at age 21 you are half blind.
I ended up pursuing this ""blindness"" and ended up at the University of Waterloo. A team of student opthamologists examined my eyes and determined that yes, this was keratoconus. My thoughts were ""Kerato-what?"". Neither myself or my mother knew what keratoconus was, so we were pretty struck by the facts. I was told there was no cure, except to wear RGP lenses to help keep my corneas shape. They didn't work for me; they felt like sand in my eyes...so I stopped wearing them. Years would pass before I decide to look into another solution.
I should explain that (until recently) I have keratoconus in my right eye only. My left eye is dominant, and is nearly 20/20. I have relied on this until now.
Last year, I was working in an outdoor shop in Calgary helping a woman out with a pair of running shoes. After asking what she did for a living, she explained that she is an eye doctor. Naturally, I mentioned that I was diagnosed with Keratoconus a few years back and am struggling with it still. She offered to take a look at my eyes and explained that her specialty is keratoconus specific contact lenses. I was ecstatic! Finally, a solution!
I ended up at the clinic later that week, and met up with the doc. She explained that the contact lenses she would be fitting were a hybrid: rigid contact lens, with a soft contact skirt that sort of wraps around the cone of my eye. After a few hours, we narrowed it down to a lens that fit and gave me a significant boost to my vision. Problem solved, right? Well...it wasn't as easy as it seemed.
After a few weeks of wearing these contacts, I had to stop. I was experiencing some pretty aggressive headaches whenever I put the contact in my eye. The problem is with my brain. My right eye has gone close to 10 years without any real correction, so my brain has learned that the information coming from my right eye is useless...and it ignores it. Now, all of a sudden there is information that my brain can process once this contact is in and it causes me to lose balance, depth perception and gives me bad headaches. Not good. So again, I stopped wearing them.
I spend most of my time looking at a screen in some way shape or form for work, and have noticed that I am squinting a lot more to read what would normally be legible. My girlfriend has commented that my night driving has suffered because I am squinting to reduce some of the glare and halos from other car headlights. Time to look for something different.
I remembered hearing from the student opthamologists that keratoconus was degenerative, and will result in possible corneal rupture once the tissue is stretched to its breaking point. After this point, the only option would be a corneal transplant. Hmm. This got me thinking...
What if I get a corneal transplant now, instead of waiting for the inevitable? Shouldn't it be easy to do? I decided to get some more information on it. Google to the rescue.
Until this point, I thought there was no cure, and I would just have to live with it. Imagine my surprise seeing that there were a number of treatments for keratoconus, that didn't involve cutting anything! What a relief. I decided to book a consultation with LASIK MD, and see what my options were for laser treatment.
The doctors at LASIK were very forthcoming in saying traditional laser treatment is not an option, which I had already understood. They explained what Corneal Collagen Cross Linking (CXL) could offer, along with the application of T-PRK. They also showed me that I had keratoconus in both eyes, not just one. This was the most startling news I had heard, as my vision in my left seemed perfectly fine. Now I am facing treatment in both eyes, not just one. Okay. My mind got wrapped around that pretty quick. Lets just do what needs to be done.
I was told CXL will stop the degradation of my vision, which should eliminate the need for an invasive corneal transplant in the future. The T-PRK will improve my vision SLIGHTLY, and is not guaranteed. To give you an idea, my prescription in my right eye is -11.5, and after the treatment I could potentially be able to see as good as 20/100. To me, this was amazing news! Then came talk about my left eye...
I guess since I have keratoconus in both eyes, I need CXL and T-PRK treatments in both eyes. This is the situation now: My left eye is my crutch. It's the only thing I have that allows me to see ""normally"", and continue my life as an active and generally happy individual. I understand that loss of visual acuity is a common side effect for up to 6 months after CXL, and frankly, this worries me. Does that mean once I get the procedure done in my left eye, I will relying on a best case scenario of 20/100 in my right eye? Yikes.
At this point, the only alternative is to do nothing and the keratoconus progresses to the point where I have no vision in either of my eyes...so I guess I don't have much of a choice.
I'll be focussing (pardon the pun) on my right eye first, and hopefully the recovery is swift, without complication, and I gain some level of sight. Even if my baseball days are over...
I'm hoping my story helps those who are unsure about whats out there for treatment, and maybe those who have had the same experience that they can relate to me. For me, I find comfort knowing that someone else is having the same experience, and love hearing about success stories of people with keratoconus being able to see again.
I'll let you know how it goes! I'll be booking the procedure in the next week or so. I'm very optimistic, and actually pretty excited for any improvement.
Hang in there!
Hang in there!