My keratoconus merry-go-round

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.

Brock Taylor - My keratoconus merry-go-round

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!

Brock

12 comments:

  1. CXL is not approved and has been turned town recently for the second time by the FDA.
    What you need is a: A doctor that knows someone who can fit you with rigid contact lenses (Good ones are really rare) and a referral to such a person who will probably not be an MD or an OD.

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  2. Even if it's not approved by FDA you should definitely do it. It stops progression and in some case there is improvement. My son had it in both eyes along with intacs and had 5 lines of improvement on the eye chart. He is now seeing 20/40 with his glasses. He, like you, could not tolerate the rgp lenses. Good luck.

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  3. I had the CXL + PRK done on both eyes in Edmonton Alberta a few years ago. Like you I have one good and one bad eye so I did each eye 6 months apart. Results have been good because there hasn't been any progression since the procedures and I am able to see a little better at night.

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  4. My merry-go-round continues...

    After my LASIK MD consultation, I received a phone call from a receptionist there telling me there was nothing their clinic could do. They offered no suggestions and could not refer me to another doctor that could help. I found another doctor in Calgary that has given me similar news. Because my corneas have not changed shape in more than 2 years, there is no coverage for the treatment and actually very little to no benefit to have the cross linking done. I am looking to find a doctor in Canada that can perform the Intacts procedure, as the doctor in the US has quoted me $6500 USD for the surgery in one eye. I cant afford $18K, so I need to look elsewhere. If anyone knows of a good doctor in Canada that can do this, please post it here!

    Brock

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  5. I look forward to hearing your story after your procedures. My son was diagnosed almost 2 years ago at 16. Legally blind in one eye and 20/20 in the other. He has had crosslinking,ck and intacs in his left eye and cross linking only on his right eye. He is doing well. He wears glasses about 80% of the time and he wears a scleral lens on his bad eye about 2-3 times per week under the glasses. He does this so his bad eye doesn't wander from not using it. He only wears the lens about 18-24 hrs a week. He hates it because he experiences all of the things u mentioned when started wearing hybrids. He prefers to mainly use his good eye with glasses. Since his procedures he has regained some vision in his bad eye. We are thankful for all the treatment options but my son still says Keratoconus sucks and I don't disagree! Best of luck to you

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  6. Hey Brock,
    I am a local Optometrist in Calgary, and completed a residency in Cornea and Contact Lenses in the states before coming back to Canada. I would caution you against intacs. Have you heard of scleral contact lenses? I can recommend the best corneal surgeons in Calgary (if you haven't seen them already). Feel free to contact me at: [email protected] I'd be happy to tell you about new advances for keratoconus, either surgical or with specialty contact lenses.
    -Andrea Lasby, O.D.

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  7. Dear all, I'm Mehede Hasan, from Bangladesh. I suffering Keratoconus Disease. My Right side eye is gone, and left side eye condition not good. I Used RGP Lenses, then Used Rose K Lenses (for my right side eye, but it's not working). I saw my country all Cornea Specialist Doctor. But Not good result. Finally, I went to our Neighboring Country India 18/06/2015, But this Hospital Doctor told need my Cornea Transplant (he gave me Rose K, but now not working and he told Crosslinking not enough my eye), But still now not possible bearing my this operation.

    Suggest me or Please Donate Me for My Operation.

    Thank You
    Mehede Hasan
    [email protected]

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  8. UPDATE:

    I have found a doctor that can perform the CXL+Intac surgery on my right eye! Very excited, and happening soon. I'll keep updating after the surgery is complete. My left eye will have to wait until my right has healed, but it should be done by the end of this year!

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  9. CXL will stop the degradation and strengthen the cornea. Even with a strengthened cornea (post CXL) contact lenses like scleral lenses, PVR PROSE, and EyePrint PRO are often needed.

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  10. im going through pretty much exactly the same thing at the moment, although it is the left eye with me. I am going to the eye hospital tomorrow to try out some different lenses as I couldn't stand the feeling of the RGP lenses. Fingers crossed

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  11. I'm in a very similar position, next to no sight in my right eye, nearly 20/20 in my left. I had the crosslinking surgery done in both eyes and it made no improvements to the sight in my right eye, but it does promise to slow down the progression of kerratoconus. Unfortunately in my left eye (the good one) it actually worsened the sight, only a small amount but when you're relying on it, you notice! I was back to normal a month after the surgery but I would completely say to go ahead with the surgery on your weaker eye right now, but wait until things start to go downhill for your good eye before you get the surgery on that one. Having surgery on both eyes at once was really overwhelming. I spent a couple of weeks not being able to see anything and I was in a lot of pain, I really wish I had just got the one done for now. Good luck

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    Replies
    1. Hi Cara, if you would like to participate in our blog and share your experiences with other keratoconus patients, you can send your story and photos to our email: [email protected]

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