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Post Info TOPIC: epi-on crosslinking 1 month ago
Carly S.

Date: Mon Aug 13 9:38 PM, 2012
epi-on crosslinking 1 month ago

I have keratoconus. If you are reading this, you probably have it too, or know someone who does. It is an extremely frustrating disease that progressively distorts your vision until, often times, inevitable corneal transplant is performed. Inevitable, that is, until corneal cross linking, an experimental procedure that halts the progression of the disease and in some cases even offers vision recovery. I had "epi-on" cross linking performed on both of my eyes about a month ago, and wanted to share the experience with others in the KC community. My KC is moderate in my right eye, and moderate to severe in my left eye. I am considering starting a family soon, and it was recommended that I get the procedure before pregnancy, as it can sometimes cause KC to worsen.

Week 1:
The procedure itself is not very eventful. I was told to bring an ipod, since patients tend to get bored while the riboflavin is being administered. I was also given a valium for my nerves. Of course the first thing that they did is put on the kubrickesque eye specula and spread my eyelids far apart. This was uncomfortable and a little creepy, but not painful. They numbed my corneas and put small circular pads on them while the riboflavin drops were administered. It was very difficult to keep the pads from sliding around at first, and they had to be readjusted with tweezers each time they slipped. However, after a while it got easier to keep them still. This process took about forty minutes. Once the doctor decided my corneas were sufficiently saturated, I had the UV light treatment. The light alternated on and off for 15 seconds at a time. When the light was on, I was told to focus on the "green" dots. I saw one blue dot, so I looked at that. This went on for exactly 30 minutes, and was nothing different that what I had expected from talking with the doctor and reading other patients account of the procedure. Some contact lens bandages were put on my eyes and I was given several eyedrops, some vicodin and a sleeping pill to take home. The antibiotic drops were to be used every four hoursI was to return in the morning to check on progress and hopefully have the bandages removed.

When I left the office, everything seemed fine. My vision was pretty blurry and I was sensitive to light, but I had no trouble keeping my eyes open on the ride home. Once the numbing drops began to wear off though, things changed very drastically. It felt like my eyes were on fire, and I could not open them without intensifying the already excruciating pain. One of the drops I was given was the numbing drop, but I was told that it would interfere with the healing process if I used too much of them. The pain was the worst pain I have ever felt in my life. Even worse than the kidney stone I passed when I was twenty. I had to use the numbing drops, but they only lasted for about 45 minutes. I remembered the doctor saying I could ice my eyes, or use a cold compress, and this actually helped with the burning sensation. I would recommend that you fold up a good strong paper towel before hand and mould it to the shape of your face. Then stick it in the freezer. You can make several of these ahead of time and keep them in a ziplock bag separated by wax paper. This works well, because it delivers cooling relief directly to your eyes, but doesn't put much weight on them. You should let it warm up a bit before putting it on your face, as it can be quite a shock directly from the freezer. Between the vicodin, and the compresses I could keep from writhing, but it was still extremely painful. Even with the sleeping pill, I was unable to get much sleep. I had to wear plastic guards taped to my face over my eyes during the night.

I was not expecting this level of pain, even though the doctor had told me that the level of pain varied widely from patient to patient. All of the accounts I had read on the internet talked about discomfort or moderate pain, but there was nothing that prepared me for the experience. This is the reason I am writing this. So that someone who is researching the procedure is aware that the pain could be unbearable.

The next morning I was still unable to keep my eyes open for more than one or two seconds, so my follow up visit was rather unpleasant. The doctor did put another round of numbing drops in my eyes though about 20 minutes into the appointment, and this was a huge relief. I could keep my eyes open, and while my vision was still mostly fuzzy, outside in the sunlight I was able to momentarily focus a few times. Those moments were promising. I was told not to expect any improvement in my vision, and I knew that it was only a possible outcome of the procedure. But anyone of us considering corneal cross linking can't help but hope for some vision recovery. I am contact intolerant and my glasses can help with my plain old astigmatism, they can't do anything for the distortions caused by the KC. I have long since given up commonplace activities such as driving, bike riding, or even recognizing people's faces at night. Of course I hope that this process will result in vision recovery. It is still too soon for me to tell.

Day four brought much needed relief in terms of pain. I could finally keep my eyes open! I didn't even need to take any vicodin. This was in contrast to my double doses all day the day before just to be able to sit still and breath like a normal person. My vision was still pretty blurry, and as an experiment I tried on my glasses. They made barely any change. So I settled for books on tape and watching Louis CK standup instead of Battlestar Galactica. I am on the fifth day now, and my eyes are open with no pain. My vision is still a little fuzzy, but my glasses actually make a difference today. They are still not quite right, but it is much better! I have an appointment on Tuesday with the optometrist to test my vision.

Week 2:

My vision has continued to improve over the last several days. It is now better than it was before! I have seen things that I have never seen before in my own neighborhood. I can  watch television in the dark, and see the characters faces! It is very interesting how different the characters look on BSG from how I originally perceived them. I read signs, and marvel at the stark contrast of the skyscrapers set against the sky, with their edges clearly defined.

At the optometrist's appointment, my corrected vision according the eye chart was the same. But those of us with KC know that there is more to the eye chart then being able to see the letters. The smearing of the letters that I could read was a little less pronounced than I remember it being before. We did a new corneal mapping, and the results looked the same as before the surgery, as did the corneal thickness readings. The prescription that I saw "best" with was slightly different than my pre-op prescription, but I will not get new glasses until the results from two consecutive checkups give the same reading.

I continue to be amazed at simple things like building ledges and billboards. My night vision is not very good, but in a different way than before. I see a lot more halos around light sources and a little less streaking. I think the halos are a result of my corneas still healing, since I have heard about this effect from people who have Lasik surgery. They report that it usually goes away. I hope so.

Week 3:

Towards the end of the week, I noticed that while watching TV, the characters faces were not as defined as they were last week. I am starting to have trouble again with the smearing of background lights in a scene obscuring foreground material. Outside of television, my night vision has improved. The halos have basically disappeared and the smearing is a little less than that I recall it being. I still would not be comfortable driving a car in the dark.

Overall this week, my day to day vision is not as good as it was last week, but still better than it was before the procedure. I have another appointment with the optometrist next week.

Week 4:

Things have been pretty much the same this week as last week. I shared this with the optometrist during my appointment, and she was not surprised at the fluctuations in my vision. The vision with my current glasses was slightly worse than last time, and my uncorrected vision was the same as before the procedure. However, it should be noted that I haven't seen anything other than the big E without my glasses for more than 12 years.  My corneal thickness was ever so slightly improved from pre-op, as was the corneal mapping of my left eye (the moderate to severe eye). When it came time for the eye chart again with the phoropter , I was not expecting much.

After several minutes of "better five, or better six?" with my right eye, something amazing happened. She moved the eye chart down to the 20/20 line and asked me to read it. And I did. Just for the record, I have had the FZBDE and OFLCT lines memorized for quite sometime now, after going through the tedious (and unfruitful) process of contact fitting. (I am convinced that the only reason I have been able to read these off the eye chart in the last six years or so is because I already know what they say.) But I never really even knew what the 20/20 line said, because no one had asked me to even try to read it in so long. I was overjoyed to the point of tears! When the process was repeated with my left eye, I was able to see 3 out the five letters, something I never thought would be possible for me again.

However, I will not get that prescription, as my eyes will continue to change over the next several months, and as I said before, we need to wait for stabilization. So I am not seeing 20/20 at this moment. But the idea that there exists a pair of glasses that I could put on my face right now and see 20/20 is so exciting to me that it doesn't matter that I might not wear those glasses until the end of the year. Because once I get them, I will be able to wear them for the rest of my life!

To be clear, I don't expect to ever be able to see like I did before KC, or even be able to see moderately well without correction. But I don't need that level of improvement to be overwhelmed by the results.

I went for a walk the other evening, right at dusk. Drivers were just beginning to put on there headlights, and store signs were just starting to be noticeably lit. Previously, this had been one of the worst times for me. I think it is because no one really sees that well in the dark, and my expectations are much lower. Whereas, at dusk, it is extremely frustrating because I know I should be able to see better than I do. In the daylight, all of the smearing and ghosting happens against a much brighter background and is not nearly as prominent. It is still there, but it is much easier to scrunch up my face and ignore.

Now it is definitely improved! I still see ghosting and streaking, but the streaks are not as long, and the ghosting is not as far away from the actual image. It is more like what I saw 10 years ago, when I was still very functional! (Although, I have no plans to get behind the wheel anytime soon.) My next appointment is not for another 3 months. I will post an update if there are any dramatic changes before then.

Carly S.

Date: Tue Aug 14 1:06 AM, 2012

Thanks for the encouragement, Penny.

When I started documenting the experience, my main intent was to let people know how painful the recovery was. I had read several accounts, but none of them made it seem like it was excrutiating, and I wanted to make sure others were aware of the possibility.

(I wonder if it related to the fact that I am/was contact intolerant? I tried for two and half years to fit medical contact lenses. I tried everything from RGP's to piggy-backing to scaleral lenses. At the time, these were the only available options, but they were all just too painful to be viable. So I had to take what I could get from the glasses.)

But as my vision continues to improve, I am realizing now that the pain was worth it. smile



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Posts: 151
Date: Tue Aug 14 5:13 AM, 2012

May a firstly compliment you on how well you write, you write very well, in that its like your not typing but are actually speaking to us! smile

The pain, the contact lens intolerance, is usually common in KC. I once had a director of optometry of a center tell me (and showed me close up pictures of my corneas) which showed that since in Keratoconus the cornea is thinner than normal corneas, the nerve ends are more closer to the surface of the cornea and this is why more pain is felt when contact lenses is put in to the eyes when they used in KC. I guess this is why I did feel a lot of pain myself when I had Crosslinking done and you too.

I thought I was well read up on KC until the director of optometry told me the reason to contact lenses being "a pain" to wear (I actually hated the idea of putting things in to my eyes...that in it self was a pain to do!).

I do not know how its ok to squash a compromised cornea (such is the case in KC) with a HARD lens and when they are hard to wear. Our corneas are crying out (literally with water coming out of the eyes!) that to keep them away (actually its good if you can wear glasses as there are risks to contact lenses, and these risks are on going as a person wears them)

Best of luck and well done in taking control of the situation that you were faced with.




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Posts: 11
Date: Tue Aug 14 5:38 AM, 2012

Welcome Carly, thats a really great post from you!

You know, even after everything has settled down (which can take months as you rightly say) you could see how it goes with glasses (and it looks like things are going in the right direction!) and you still have other options left like, topograpohy guiderd PRK laser (then sealed with another crosslinking), which I think if you wear glasses some good way, can give you a good out come where you very well maybe able to throw your glasses away.

I'm letting you know you are in a great postion as there many can not see with out medical contact lenses (but you have done exsteamly well in getting treated as you have) and their KC is too advanced for many options which work well earlier on in KC.

I am sure you have much more happy days to come! smile



Date: Mon Sep 10 1:36 PM, 2012

Thabks for your story Carly. I had Epi off cross linking in my left eye almost 2 years ago. I agree te pain is intense-yet for me it was not as bad as I had anticipated. I was back at work (in meetings-not with vision) within a week. The day of the surgery was the worst-I clearly remember when the local wore off and the pain just made my whole body feel ill. But following that the main issue for the next few days was EXTREME light sensitivity. I stayed with my parents post op, and I remember drawing the heavy block out curtains was not enough. The crack of light at the top/bottom wa enough to induce pain from light sensitivity. My dad ended to putting thick black plastic over te outside of the windows! That was good. I was bored out of my brains-not enjoying audio books, and ended up sleeping most of the time. After the 3rd or 4th day I felt much better, but continued to wear sunglasses indoors for probably nearly a fortnight. Carly, you mention you have lens I tolerance-so do I. For me my right eye is more Intolerant. I am currently looking at surgery to try to allow me to get out of lenses as I am legally blind with glasses, but can't stand lenses (go through times where it's awful and others where it's tolerable-but have been on flarex steroid drops for 8 months now..ridiculous.) if I end up getting an op I'll be able to say whether my lens intolerance impacted pain level. Carly, we're you able to see ok with glasses pre cross linking? My cross linking hasn't made significant improvements in vision (some, but not nearly enough for glasses). Am looking at having right eye cornea grafted or intacs+CXL. Have another appointment tomorrow-the wait is frustrating!


Date: Wed Sep 19 5:36 AM, 2012


It is really unfortunate how many keratoconus patients are unable to wear the contacts we so desperately need to be able to see! I was very lucky to be able to see well enough to function in glasses before my cross linking surgery. I couldn't do things like drive a car, ride a bike or go hiking, but I definitely was able to get around, do my job etc. (Luckily, I live in a city where driving is not really necessary.)

I also experienced some sensitivity to light after the procedure, but not nearly to the extent that you describe. That sounds awful.

Good luck with whatever measures you end up taking!



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Posts: 1
Date: Tue Oct 9 11:26 PM, 2012

Its interesting to see how everyone's treatment went, and I hope everyones vision is stabilized.
Unfortunately I only last 15 minutes during the procedure, after suffering what seemed was a panic attack (I just couldn't sit still for that long during the initial phase of treatment). Once it got to my head that was it I had to sit up, I did this camly and the procedure was aborted safely. I had to endure the post-pain for a few days knowing no actual results would come of the failed procedure.
What made it worse was my parents had to still pay the 2800 Australian Dollars.

Now I am contemplating whether to have another attempt. My parents really want me to, and do not care for the huge bill, however, that is on my concious, as well as the fact that I have to sit still for another hour. The post-pain is not much of a concern to me, as I can still move around, and relax.

I started the day of procedure fine, and was calm right up until surgery began. Time just went by so slowly, and the ipod i was allowed in my left ear did not really provide much ease.
The surgery table, was comfy I guess, but once I got aggitated, anything would have been uncomfortable!

I need peoples advice on how they managed to keep calm whilst keeping the eyes fixed, and their body still (aside from the valuem haha).

I wish I could undergo general anesthetic, but thats not allowed for this.

Any advice, or even support would be appreciated.

Stefan La Terra



Status: Offline
Posts: 15
Date: Wed Oct 10 4:35 AM, 2012

stefan, where I had my TCAT and cross linking done (Lasik MD), it seemed like standard procedure that they give you something to relax (anti-anxiety pill) just before the procedure. Best of luck.

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