Bill's Keratoconus Story: From Diagnosis to Crosslinking

Corneal Collagen Crosslinking with Riboflavin (CXL)

My son went for his annual eye exam and it was discovered that he had moderate keratoconus in his right eye and mild kc in his left. We were both pretty shocked as everything seemed fine during the exam until the doctor and assistant started whispering to each other and going over the results again and again. The doctor finally explained that what they initially thought was a malfunction of the machine testing Bill's eyes was actually keratoconus.


We were booked in to see a cornea specialist a few months later. She explained in greater detail what keratoconus was and what the implications were for Bill's eye sight. What she told us was pretty frightening. I can remember trying not to cry as I listened to her say that my boy could wind up legally blind and having to have a corneal transplant.

She explained that there was a procedure available called crosslinking that could possibly stop the progression of the disease. The only drawback was that it was  not FDA approved. Which meant that insurance would not cover the procedure. At the time the crosslinking was still in clinical trials and we were hopeful that we could get it done in Maine within a month or two. Bill's kc was pretty stable at that point so we went home and waited for the doctor to have an opening in her schedule. 

About a 2 months later Billy let me know he was having a spot of blurriness in his right eye. I called the doctor and we got an appointment for that day. She did another topography and found that in just two months his kc had progressed by 2 diopters.

She was very concerned. She also let us know that the clinical trials had ended and the machine was no longer available to us in Maine. At this point she was telling us that we could no longer afford to wait and that it was imperative we get the CXL done to save what vision we could in the right eye. She suggested Dr. Donnenfeld in NY. I ended up calling when I got home from the appointment and they were able to fit us in a few weeks later at their Connecticut facility. 

Billy had the epi-off  crosslinking done on his right eye in October. The procedure itself was fairly painless. He did say it was kind of weird when the doctor scraped the epithelial layer. He remained pain free for about 2 hours after the procedure.

Then the pain hit and for the next 8-10 hours it was pretty intense. He found the pain meds to be pretty useless. What seemed to help the most was keeping the room dark and holding his hand over his eye and trying to sleep. He has had some improvement in his vision which is a bonus to us. We are hopeful, but know that there could be changes in the following months. 

We are so incredibly grateful that this procedure is available and that we were able to get it for our son. We are hoping to have the left eye done in a few months. His specialist is keeping a close tab on that eye to watch for any signs of progression.

By Jen Gerlach.

29 comments:

  1. Where was the procedure done at in CT? I also have KC and my vision has changed in the last 6 months and I'm trying to get as much information on the CXL as possible.

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    1. We had the procedure done at Opthalmic Consultants in Fairfield CT. by Dr. Donnenfeld. He also has an office in Long Island. We are pretty happy so far with the results. The office was awesome. The doctor and the support staff answered all of our questions and were just really great with us. Good luck!

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    2. As a keratoconus eye surgeon I can confirm the doctor who discovered the condition deserves real credit for saving Billy's sight. For ore information on having keratoconus treatment in other parts of the US this link may be helpful www.cxlusa.com -Roy Rubinfeld, MD

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    3. I agree. Thank you for the link as well.

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  2. Where was the procedure done at in CT? I also have KC and my vision has changed in the last 6 months and I'm trying to get as much information on the CXL as possible.

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  3. It's like I read my story about! The same for me, 3 years before. The crosslinking did prevent the KC progress totally, with some improvements also in vision. (I live in Greece)

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    1. Glad to hear that you haven't had any further progression. That wonderful!

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  4. Interesting story :) im 19 y/o and i experiences my first crosslinking as terribly painful tbh! but maybe they didnt put in enough painkiller..right after the crosslinking i still had that terrible feeling and i slept like 3 days in a row after that, 8-10 hours after the CL i didnt have any pain because the painkillers really helped me but i couldnt open my eyes for quite a while..

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    1. Billy thought it was pretty painful the first day too. Glad you were able to get the cxl done.

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  5. I am happy to hear your son had a good experience! I had crosslinking done about a year ago. The procedure itself was not painful, but I had lots of trouble wearing my RGP lenses after. After searching around I found a doctor who fitted me with custom PVR PROSE lenses. My vision is now stable and clear.

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  6. Thank you and I'm so glad to hear your vision is now stable and clear.

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  7. Hello.

    I`am wonderig how your son is now`?

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    1. Hi. Thank you for asking. He's doing really well. We have follow up topographies every couple of months and so far no progression and he is still showing some improvement in vision in the eye that had CXL. :)

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  8. Hello I have Kc and is getting worse. Live in CT. I'm interested in cross-linking but every ophthalmologist I have called is a dead end street. Please can someone help me. Can you write the address and phone number. By the way thanks for your comments they give hope.

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  9. Hello I have Kc and is getting worse. Live in CT. I'm interested in cross-linking but every ophthalmologist I have called is a dead end street. Please can someone help me. Can you write the address and phone number. By the way thanks for your comments they give hope.

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    1. Hi Ash,
      Sorry to hear your KC is progressing. Billy had his procedure done in Fairfield at Opthalmic Consultants. 1375 Kings Hwy #300, (203) 366-8000 Good luck!

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  11. Thank you sooo much. I will call them.😃

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  12. I have been a KC patient of Dr. Donnenfeld's for over 20 yrs and had the crosslnking done almost a year ago. An amazing, caring Dr.

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  13. Hello I am a keratoconus patient and i went to see an Ophthalmologist and he told me i will be a good candidate to do crosslinking. I asked him about intacts procedure. Which is done to stop using this horrible glasses that are so thick and I can see better. But he said i should do crosslinking to stop keratoconus from progressing and after i should do a laser surgery. I was not aware of laser surgery for keratoconus. The doctor said laser surgery for keratoconus is new and is better than intacts. Can anybody let me know if you know about laser surgery done for keratoconus. By the way is very expensive 3,500 for each eye😕.

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