MY EXPERIENCE AFTER CROSS-LINKING

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Photo Source: http://www.amazon.com

Here is the good, the bad, and the ugly of my experience following cross-linking (CXL).

To learn what it’s like to get cross-linking surgery, you can read my post I GOT CROSS-LINKING!

Please note that everyone has a different experience with CXL. I just had my 3-month, post-op follow-up with my local ophthalmologist as required by the FDA for the CXL clinical trial I was in.  However, I haven’t written about my experience with CXL post-op in detail, so I’ll start there.  Again, this was my experience and it’s not typical.  I saw a top surgeon in Los Angeles, but my body has a strange reaction to about everything.

I had unremarkable, bilateral cross-linking surgery in the late afternoon and was given anesthetic drops mixed with a medication to dilate the eyes to take home, which is supposed to help with pain.  My doctor mixes these drops, as they aren’t readily available in a pharmacy.  I also had a steroid eye drop to start on day 5 and an ocular NSAID for pain.  I was told that some patients have little pain and some are in agony, and I guess I was unlucky enough to fall into the latter category.

I got back to the hotel with my blackout sunglasses and noticed that I had 2 black eyes—common for me and a shock to my doctor.  I also had red, irritated eyelids and my right eye was bloodshot from surgery.  I immediately started using the numbing drops and the NSAID drops as often as my doctor said I could.  I was very uncomfortable and it felt like acid had been poured into my eyes.  I had to sleep and shower with special goggles but I hardly slept as I woke up every hour from the pain and had to put in more drops, so it was a long night. The lights were killing me and my vision was worse, so trying to get into the hotel bathroom with the fluorescent lights was not fun.

The alarm woke me up very early again for my post-op appointment the next morning.  Aside from the eye pain (still doing those drops 3 times an hour), I was feeling really nauseous but managed to get cereal and tea down. We packed, checked out, and headed back to the doctor’s office. My nausea was getting worse by the minute.  The parking was in a hot, humid, underground garage and suddenly I was crouched on the floor as the blood rushed out of my head—I tend to pass out when I feel really sick.  I didn’t want to get into the elevator but had to get out of that garage and into a bathroom, STAT!  I remember the bathroom being in the hallway and needing a key, but luckily a woman was coming out and I just grabbed the door, ran in, and threw up about a dozen times in the toilet—and I never throw up!  It was horrible.  Well, aside from my eye pain, once I cleaned myself up, I felt much better.  Sort of reminded me of why I don’t drink.

I was rushed back to see my doctor, who did an eye exam and said everything looked okay.  He thought I was sick from the Vicodin, but I told him I had refused the Rx because I do get sick from narcotics.  I think if I could have taken 2 days of narcotics, the eye pain would have been much more tolerable. So, he figured it was my body reacting to the pain and put more numbing drops in my eyes—the same anesthetic ones I had with me and had my eyes doused with in surgery.  I had a few more things to do there and then was free to go and head back with my mother to her home 2 hours from L.A.

Well, guess what?  I got nauseous within 5 minutes of my doctor putting those numbing drops in, so now I knew what the culprit was.  I get very sick from general anesthesia so I suppose that nearly 24 hours of those drops was enough to make me sick.  Then I had to get in a car while wanting to throw up, all while being stuck in L.A. traffic on the freeway. I remember putting something over my glasses to block out all light and I reclined the seat and somehow made the trip back, which took about 3 hours due to the traffic.  I kept the NSAID drops nearby and used those every hour to help with the pain.

When I got to my mother’s house, I went straight to bed, which is what you’re supposed to do right after surgery, not 24 hours later.  It’s hard to get comfy with those goggles you have to wear and sleeping was hard since I was still waking up every hour to put in the NSAID drops.  I used Acuvail, by the way. Actually, I normally can’t sleep without Ambien, but after days of 4 or 5 hours of sleep, I was able to take a nap.

I woke up and remember having chills and chattering teeth, just like when I’ve had general anesthesia, so that sealed the deal that it was the drops that did me in.  Again, most people don’t have any problems with anesthetics and won’t deal with any of this.  I know I washed my face that night.  I wasn’t supposed to get my eyes wet for a while so I had my goggles on.  I must have eaten something—wish I could have seen and taken notes—and went to bed with my Ambien. The 2nd night I woke up at least 5 times from the pain and to douse my eyes with the Acuvail and lubricating eye drops, but the pain was better than the 1st night.

The next day, which would be day 2 post-op, I stayed inside and felt like I had the flu.  I would say this was the medication still lurking in my body and have never heard of any of these side effects.  The lights were bothering me at night inside the house (not horrible) and the glare from the silverware drawer was quite bad.  Again, I was using the Acuvail every hour still and my vision, as expected, was getting worse. That night I woke up maybe 3 times from the pain, so things were getting better, even though my vision was getting even worse.  I think it was the 3rd day that I finally felt like I wasn’t under the weather and even though the pain was still bothersome, I was almost sleeping through the night.

I returned home by car on day 5 post-op.  The pain was better but my vision was so distorted I couldn’t see a thing, which I assumed was due to my liquid bandage contact lenses being so dirty and full of all the medications.  I had also started the steroid drops, but all seemed okay with that. The several hour drive home at night was like the 4th of July. I couldn’t make out anything but the lights, which all looked like sparklers and fireworks.  I had my drops handy and was still on those every hour, with my doctor’s permission.  I got back home and thought I just had to wait until the next day to see my local ophthalmologist for my 1 week post-op and to have the contact lenses removed.  Yay, only one more day of those goggles.

Well, things didn’t turn out as expected.  I saw my doctor who went into alarmist mode since my epithelium hadn’t healed. The cells had partially grown back in my right eye, which had better vision now, and hardly grown back at all in my left eye, which came in at 20/400.  So, no getting the contacts out.  He scheduled me for a recheck in 48 hours and if things weren’t better, he was going to have to put something over my cornea in my left eye to get it to heal.  He blamed the dry, desert air and of course, we all have A/C going when it’s over 100°F.

I decided that if I doused my eyes with my liquid gel drops every 10 minutes and taped my eyes shut before bed—they’re half-open when I sleep—that I could get the epithelium to heal in both eyes and it worked!  I got the contacts removed (no difference in vision and I’d actually lost one contact from all the drops), got permission to sleep and shower without goggles, and was on my way.  My vision was dramatically better with the epithelial cells back on my corneas, too—well, not 20/400 anymore.  I thought I was over the hump.

Not so fast.  My dry eyes had now entered the no-tear-production zone and I was an achy mess—worse than normal—and having horrible night sweats.  I have problems with oral steroids and get those symptoms minus the dry eyes, so at day 17 I finally got off the steroid drops after talking to my doctor in L.A. and my symptoms were gone, except for the horribly dry eyes.

My right eye, which was my worse eye pre-op, had great improvement from the surgery and I have somewhere between 5-7 lines of improvement in my VA.  My left eye, which is healing much slower, currently has about the same VA as pre-op, so I’m much more symmetrical and have binocular vision again.  My VA will fluctuate for 3-6 months so I still have a ways to go.  I also no longer have worsening vision as the day goes on.  How I see when I get up is how I see when I go to bed.  How nice.  So, with that right eye I appear to be the poster child of CXL, but I have this slow healing of my epithelium and the severe dry eyes that have left me using ocular ointment (yes, essentially Vaseline) in my eyes every 30-60 minutes.  This is apparently not a normal side effect and I’m wondering if it will ever go away so I can get contacts and not have to explain to everyone why my eyes, eyelids, and eyelashes are so shiny.  Not to mention my eyes hurt!

So, this is where I am 3 months post-op and I would hardly say it’s normal.  I can’t drive during the day due to the light—a whiteout effect of sorts—and I rarely drive at night since my depth perception is still off and I just can’t see well enough. Near work is still impossible, but I finally figured out how to blow up the font on the internet via Google Chrome and I write my to-do lists with Sharpies and big sticky notes.

I sure wish I could see to pluck my unruly eyebrows and file my nails, but I guess I shouldn’t be so petty.  I could be blind, after all.

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35 thoughts on “MY EXPERIENCE AFTER CROSS-LINKING

  1. gotta luv ur witty truth graphic via a clever knockoff of Snellen’s eyechart

    • I think Dr. Snellen wrote that on the lines I can’t read and it’s my Louis Vuittons that are the real knockoffs. Always find humor in your misery (and good graphics to borrow). Thanks for the comment and liking my post.

  2. dyspatient says:

    A, have you ever used voice recognition software? It’s good for writing if you can’t look at the screen, although you need to use some tips for proofing. I’m also wondering if you would be able to get auditory computer navigation software (screen readers). My blind and low vision students all use one form of this software or another (Jaws, Window Eyes, ZoomText). I think it’s pricey but depending on how bad your vision is and whether you count as “legally blind”, you might be eligible for assistance. In the meantime, what operating system are you using? I have some tips for Windows for vision – you may know them already but I’m happy to share if not.

    • Thanks, D! Hope I can give you a nickname? Appreciate your info and offer to help! Did you notice my low-vision friendly font on here? I am aware of some of the products you mentioned, but I never used them since:

      1. My keratoconus came on so fast I went from good vision, to so-so vision with glasses, to “nothing is helping; go get CXL surgery STAT” in 1 year.

      2. The keratoconus (pre-op) caused so much distortion that I could barely read even a large font on the computer. It’s more than just blurriness. We see multiple images and the images streak. Highly irritating when 1 sentence has turned into 3, etc. There are special contacts available (usually “hybrids” now) that help out most of us until super-advanced, but I progressed so fast I never got a pair. Saved some money there. This is how most keratoconic people can get by and have consistent vision throughout the day.

      3. Lastly–the good news–I’ve been one of the lucky people to get visual improvement from CXL. Big improvement. I also have consistent vision all day, which is great. I have residual blurriness still, but my “bad, bad eye” is now able to read the 20/40 line!! My brain had literally shut-off this eye pre-op. I swear it’s because of the EDS; my corneas were loving the collagen cross-linking and tightened right up. Need that for the whole body.

      However, things are far from perfect and my eyes are still healing so it will be a long time before I can get the special contacts for my special eyes. Btw, I have Windows 7 and I use Google Chrome. What I’ve done is simply zoomed up Google Chrome via the settings tab (is that what it’s called?). It’s 3 horizontal lines in the top, right corner. I finally figured that out a few months ago. I can read/see everything online now with my default setting or zooming up more if I need to. I do lose the edges of the page, but it’s free so who cares! My real issue involves the light sensitivity I think. The white screen is killing me and it’s everywhere! It’s gotten better, but things start to fade out after a while, like right now because I write too much. If you have any cheap ideas (tinted Saran Wrap?), let me know. The good news is it’s supposed to go away eventually.

      Thanks so much for your comment. It will surely help my fellow keratoconus readers. The voice recognition software would help with my EDS since my upper body is a huge mess from it and the typing makes everything hurt more. I just think I can’t give it up. Does that make sense? I seriously need to set a timer or something and learn to take breaks (the ol’ A-Type).

      • dyspatient says:

        You’re the second person I know now who had a vision stealing condition come upon them suddenly. The other is my brother in law. He’s still in the process of getting diagnosed but went from good vision to blurred glaring bad really practically overnight from the sounds of it.

        Because I’m photosensitive neurologically and because I have some kind of (new!) defect in my right eye that makes everything bright sparkle and shine, I turn the brightness all the way down on my screens, and sometimes they’re still too bright. I do know what you mean about the white screens. I do have some ideas for tints, I researched this with a student with chronic migraines and severe photosensitivity. I’ll find my file. I’m not sure about super cheap, but I was working with an undergrad budget in mind. One thing I do, if I’m in word or another office program, I change the background color in my document to grey. Chrome’s web browser has a speech plug in/extension I like…it’s Chrome Speak. Reads only “selectable” text, but it’s nice if you’re faced with a mountain of text that it’s tough to read visually. So you have a chrome operating system? Interesting! I haven’t played with that. They do have accessibility options though, magnification with “control +”/”control -“, so say the internets; a reader; and accessibility themes for displays in the chrome store.

        http://www.rnib.org.uk/livingwithsightloss/computersphones/pc/accessibility/assistive/Pages/linux_chrome.aspx

      • Thanks for the great info; I really appreciate it. Good luck to your brother-in-law. What’s going on with your eye? Mine started in 1 eye too, and that’s when something is not good. Idea for a new post for you. I should have gotten a Dx much earlier but getting shifted to the “fresh out of med school” doc in the clinic did me in. I really want to sue him for a failure to diagnose, but I have to see the head doc there, who is the best–or only–corneal specialist in town. Gotta love it!

        OK, about the computer. My OS is Windows 7 and I use Google Chrome for the internet (what’s the IT term for that?). I must have confused you, unless I have no idea what I’m talking about. I’m sort of tech-savvy, but not the best in the world. I didn’t know Google Chrome was an OS until I saw that site you sent. Good stuff! I like your idea for Word and am going to do that, although I don’t use it that much anymore–something about not being able to work anymore. Hate it!! Great thinking, regardless. I sure hope your students appreciate you. I have no idea how to turn down the screen’s brightness but I’ll mess with that in a bit. My issue with Chrome is that I don’t have a Google account and don’t want one and sometimes you hit a wall w/o one. Oh, that might be of some use to you… I use Outlook b/c my primary e-mail is still Hotmail from the good ol’ ’90s (run and hide in the corner). I’m seriously embarrassed to use it, but Outlook is new and has some kinks and I’m afraid if I change it to @Outlook I’ll lose all my files. I find the entire layout to be vision-friendly and it seems some people feel the same (vs. Gmail). Food for thought for your students.

        Btw, I write e-mails in purple, “20” font, which my eyes seem to like. It’s so bad… Like I hired Barney to write my e-mails.

  3. dyspatient says:

    That sounds like quite an ordeal. Great that you identified that the numbing drops were making you sick….what was in them?

    • After the barf-o-rama in the doc’s bathroom the next morning, I asked his assistant your very question because my doctor mixes these drops himself (not Rx). She said the drops had the topical anesthetic used in surgery and a medication to dilate the eyes, which makes them more comfortable. Not sure why that is since the light was killing me, but the anesthetic part sure helped with the pain for 20 mins or so until I had to “drop” again. Sure didn’t sleep that night!

      I get really sick from anesthesia so I believe the topical anesthetic in the drops, which was already used so liberally in my 1.5 hr surgery, was the culprit. My doc thought I was just sick from all the pain, but I got the shakes and chattering teeth later that day just like after a general.

      I’m convinced I’m in his “really weird patient” file. Even my keratoconus was really weird, since I got it in my late 30s and had at least 10 yrs of progression in only 1 yr. The icing on the cake was his assistants thinking I’m really weird while they were cracking up about my IRRITATING mother who was reading “Fifty Shades of Grey” in the waiting room. Really??

      • dyspatient says:

        I’ve not yet found a doctor I like with a good staff. It’s like they are mutually exclusive. And that’s not to say that crappy staff automatically = good doctor…you can have crappy both. Just not good both, I think.

      • Actually, my surgeon’s assistants were nice and competent and I was laughing with them for once, while trying not to move my head. It’s my mother who’s the problem one. She’s in her 60s and married to a retired OB/GYN (even grosser). Why was she reading that book in a public waiting room? Weirdo!

        I got you on the staff, though. Good doc + good staff–It’s like finding the needle in the haystack. I had it once and once you’ve had it, you can never go back. And the search continues…

  4. dyspatient says:

    My brother in law is not forthcoming about the health stuff, it was part of a larger health crisis. He’s being told it is cataract but I didn’t think that came on like that. Mine, I’m told I have “mild clefting” in the lens but that it can be a part of aging. I’m pretty sure the eye doc I had didn’t understand the level of distortion I was describing because when he described it back, he referenced “mild halos”. Not what I have. At some point, I will find a better eye doc. Right now, too many docs!

    Barney email! Love it.

    Windows has a magnifier under Control panel –> Ease of Access Center. There are other settings you can tinker with in there under “make the computer easier to see”. Screen brightness, there are little buttons that are hard to see and harder yet to decipher at the bottom of the monitor. Different monitors use different button icons for the brightness control, sometimes it’s grouped under one button with contrast and other settings. Pain the butt, definitely worth it.

    Gmail confuses me a little with the layout but overall I like it. There is a way to move everything from your hotmail to outlook, but god that stuff just stymies me. I’m always shocked when I can get some process like that to work. 😉

    • OK, so I went to town last night trying to figure out the “brightness” options. Btw, I have a laptop so no monitor w/buttons. Finally found it in the control panel in Windows in a side column in Appearance > Display. Then I found the best thing ever! How to blow up Windows in the same column… Yes! I have it on medium now and it’s better (especially when searching for documents in my library in that teeny font). So, everything is huge now and Barney and I are happy. Oh, I had the magnifier tool but then lost it. Oh well, think I’m good to go. As suspected, however, the black font dimmed with the background so sort of a downer there. Regardless, thanks again for all your help.

      I am trying to research this eye issue you have. Did the doc say Coloboma? Sounds like he didn’t say much. It can occur in the lens and is an absence of tissue (like a missing spot), in essence. It’s congenital, however, so maybe I’m off. When I hear “tissue,” I go into EDS-mode because that’s how I got keratoconus and there are other ocular diseases associated with it. The eyeball is a gelatinous sphere of collagen. I know someone who ate a sheep’s eyeball (don’t ask) and said: “gelatinous.” I know you’re still working and it’s hard to see doctors–I hate it myself w/o a career now–but please find a good ophthalmologist when you can. Sounds like it needs to be addressed sooner rather than later. Fingers crossed for you…

      Just to make this longer, my Hotmail just turned into Outlook one day (both are Microsoft), so online it appears that I’m always using Outlook, although my primary address is still w/Hotmail. Confusing! Why the hell do I care? I hate “the Joneses” and loved the ’90s and want to go back!! I was healthy and had a life. I’m sticking w/my Hotmail, buying some CK denim overalls, and reactivating my Nextel pager. I even remember the number (should I call it?). Word.

      • dyspatient says:

        LOL The 90s excursion made me laugh. Yes, it was a nice decade for me too, mostly. And there was the healthier aspect, which was very nice.

        All the eye doc said was “mild clefting in the biologic lens” and I said “what does that mean?” And then he explained not very well, mostly that it happens to people sometimes and it’s nothing to freak out about, and he said all that with his garlic breath right in my face and I think it wiped my brain. I know, good doc. I will find one. We have a good eye hospital here in Big Northern City. 😉

        I am thrilled that you found the controls for the computer. Yes, the brightness will dim text too. 😦 I think you can bump up contrast under the display or “ease of access” settings (in the control panel, which maybe is where you were?)

      • OK, finally found the Ease of Access right there in the Control Panel (hello?) and attempted to do something and a lady started talking to me from my speakers. I think I got rid of her but better leave this alone. Looked into “resolution” in Display but felt like I was going to regret messing w/that, too! So, I’ll put up with it and hope the post-op light sensitivity goes away soon. Blowing up my OS was the best, so I owe you one. I wonder if I’ll ever be able to undo all that I’ve done when my eyes heal and I get the hybrid contacts?

        Got you on your eye stuff. Big Desert City has nothing to offer, so glad you have other options and can get away from Garlic Breath! I love how you have hospitals that you can be seen at (just like back home), even though I know your gripes about most of them. Btw, my original Dx–for almost a year–was amblyopia, which occurs in childhood as my mother has it, and astigmatism. That’s how I lost so much vision. We tend to get the last-in-their-class-in-med-school folks out here in the Wild West. Sigh.

        Btw, I always get a duplicate comment from you, but it’s all text. Odd? Not a problem, just thought you might want to know since I don’t get that from anyone else. You’re pretty tech-savvy so I hope you can figure that one out!

  5. dyspatient says:

    Duplicate comment? I wonder what that’s all about. Does it happen on my blog too or just when I comment on yours?

    The voice thing on you computer – sounds like Windows Narrator. I am not in love with that feature. I don’t know anyone who likes it, in fact. I suppose if you really needed the voice cues but couldn’t afford a better program, it might be good but generally it’s just not very user friendly I think.

    I think Wild West and the New England Outback (rural CT) sound like they are similar. Serious paucity of good docs. I am very glad I’m back in Big City.

    • Agreed! Totally abysmal health care. I just keep firing them until I find a semi-good doc who then leaves. I hate it out here but the weather is better for my achy body (like you I can’t do low pressure and humidity is a problem, too).

      The duplicate comment is when I get them in my inbox only, if that helps. In other words, I don’t know if it happens on your blog. I’ve discovered you can reply back 5,000 ways on WordPress, like right now. I’m in some bizarre little box and hoping I have no typos due to the teeny font.

      • dyspatient says:

        Ha, ok well now I’m in that little box too. Let’s see if this one double posts to your inbox.

      • OK, this comment double posted (and the ones I responded to last night/this morning), but the comment where you found a super-duper vitamin (yay!) ONLY came to my inbox in the “text-y” version. I have no clue! I always get the double, but now the single one that’s not in the typical WordPress format. Maybe there’s info in the Help section, where I spend all my spare time…

  6. Linda says:

    My son had crosslinking done on his bad bad eye in January. The pain was more than he anticipated and lasted for a couple of days and than he says it just felt dry and gritty for a few weeks. Unfortunately it did not improve his vision. He is scheduled to have his good bad eye done next month. He was fitted with a contact called PROSE that will allow him to function while the good bad eye is healing.

    • Hi Linda,
      Thank you for commenting! I have yet to hear from anyone who has dealt with CXL on here–but I get so many search engine hits on it. Your son may get some improvement in VA is his better eye, as I got improvement in both but much more in the worse eye. Who knows? I do know that roughly 2/3 of people get a line or 2 back. My vision is still terrible (if you read my newer posts) and I was so confused–how can I see 20/40 on the chart now and not see in real life? I got my answer today from a different, wonderful eye doc (will try to post on it if I can figure out the physics!) and it’s common with KC, etc., so I would’t get too upset about the no VA improvement, as I really don’t feel my overall vision is much better–I can see the TV fairly well now and my vision is stable all day, but not much else. That’s with 6-7 lines of improvement in just 1 eye. So strange!

      Yes, the pain of epi-off is no fun, but I did my research and epi-on CXL has not been proven that effective thus far (the researches are trying to makes this route as effective as epi-off) and as you probably now, it’s still epi-off in Europe (I’m really tired of the handful of docs touting epi-on as my surgeon often redoes these patients). So, glad you guys went the effective route like me–my KC is halted/improved in both eyes per the topographies (8 mos out). The best news is your son doesn’t have severely dry eyes like me (I think), and will get by fine with hybrid contacts or RGPs, etc. until the next technology is developed. I would like to get scleral lenses as they work with dry eyes and just looked up PROSE lenses–same company/idea it seems, but my vision is still fluctuating and I’m worried about insurance as the CXL in LA nearly wiped me out! Please feel free to post updates on your son… I get so many hits on CXL on my blog, as mentioned, and people need to hear more stories—that’s why I started blogging (to tell others about my CXL journey) as I couldn’t find any patient-perspective info online.

      Take care and good luck to your son with CXL #2 (boy, glad I did mine bilaterally and only had that awful pain/glass-in-my-eye feeling for one week!),
      A 🙂

  7. syam says:

    i am so scared about this surgery,becz i don”t kw i will get my vision back.CXL really works well or not.plz give me proper information..

    • Hi Syam,

      Epi-off CXL is extremely effective at halting the progression of keratoconus. You can find this information in numerous medical journals online. Here’s one such study: http://www.ncbi.nlm.nih.gov/pubmed/22378112. This means that after you get CXL, your keratoconus should not get worse and as the studies show, you may get a line or more of vision back. However, it does not cure keratoconus as nothing, not even corneal transplants/grafts, will restore your vision to how it was before. I hope that makes sense. In other words, it’s the best we have for now until a true cure is found and we can all see perfectly once again. I am now 3.5 years post-CXL and my corneas are still stable and no signs of progression (worsening of my keratoconus). Additionally, I still have several lines of vision back so my overall vision is still better than it was pre-CXL. For me, CXL was so worth it and I have no regrets, so please don’t be scared.

      If you can wear contact lenses, you should be able to see quite well once your eyes have healed via RGP lenses or some newer options for keratoconus. If you have a mild case, you may be able to see with glasses. I am lens intolerant due to severe dry eye, but I force myself to wear scleral contact lenses for a few hours to drive, get groceries, etc. and I can see surprisingly well with them.

      Hang in there; you will be okay!
      A 🙂

    • Harper says:

      I really hope you haven’t had the surgery yet. Don’t do it. I have been in pain, double vision, blurred vision, and continual vision changes- from minute to minute for the past 2 years. Lights are glares and sprays all over. You feel like an idiot when one minute you can see something and the next you can’t. Forget getting into contacts, even glasses are sometimes going to work, and in an instant you can’t see. You will think you’re going crazy. Oh, and when the dr. tells you wait a year, it’s most likely because malpractice cases have a one year time limit. At least in my state. Please get an opinion from a few doctors who specialize in keratoconus, not surgeons before making a decision that you can not reverse. Best of luck with whatever you do.

      • Hi Harper,

        I think your response was to Syam, but I’m really surprised at all of the issues you’ve had from CXL. The procedure is very simple and the only slightly risky part, as long as you meet all the surgical criteria (corneal thickness, etc.), is having your epithelium removed, which is also done every day for PRK surgery if you’re familiar with that. If you read my follow-up posts, I do actually have a couple of permanent side effects, but it’s because I have Ehlers-Danlos syndrome (EDS) which causes me to heal extremely slowly and I also scar much more than an average person as EDS affects collagen. Anyhow, EDS is what caused me to develop KC it turns out. It is imperative that the epithelium grows back within a few days, and that wasn’t the case with me due to my genetic disorder (I was misdiagnosed at the time so I didn’t know I had it). I hope you didn’t have any issues like that. In all my years of blogging and researching, I’ve never run into anyone else who’s had long-term or permanent side effects from CXL. I hope you can get a second opinion to find out what is actually going on with your eyes as your side effects are very different from mine and I wonder if it’s more than just a bad doctor as they should all be able to remove the epithelium without issue and a medical assistant can apply riboflavin drops and apply the UVA light. Perhaps something else is going on with you, as well. Btw, my CXL surgeon was one of the top keratoconus specialists in the U.S., but I’d honestly feel fine having CXL performed via a good, board-certified ophthalmologist due to the simplicity of the procedure. Well, I’m hoping to never have it again due to my EDS, of course. I’m just shy of 4-years post-op and everything is status quo, just no resolution to my lack of tears or corneal opacities post-op.

        Thanks for sharing your story and best wishes to you,
        A 🙂

  8. Greg says:

    Hello:

    I had the pleasure of reading this through and loved seeing your progression after cross-linking for 18 months. I also loved seeing you respond in 2016. It sounds like you are so upbeat about cross-linking.

    Since 2012, there has been a lot of discussion around cross-linking and i wanted to get your thoughts since you had it so long ago and (hopefully) are still improving.

    What is your thought of a procedure like PRK, with cross-linking at the same time.
    This is basically a question based on “what you know today” rather than what we knew back then.

    I have a slight astigmatism in one eye, Dr says I have KC. I do plan to get a second (maybe 3rd) opinion on it, but my other eye is perfectly fine.

    I wanted to think about potential options, and I know PRK would shapen the cornea removing the astigmatism, and the cross-link would harden the cornea.

    Your thoughts and opinions on this?

    • Hi Greg,

      Thanks for reading my long and winding post from so long ago. I also appreciate your comment very much. To start with, you might not know that my case is very complicated as after I got CXL, I was finally diagnosed with a genetic connective tissue disorder (Ehlers-Danlos syndrome aka EDS) which caused the keratoconus (KC) in the first place–I had been misdiagnosed since I got sick in ’01 and my EDS throws a big wrench in my keratoconus story.

      Having said that, my KC was regressing for at least 2 years post-CXL and was totally stable (no progression) for at least 3.5 years post-surgery. I am no longer blogging and didn’t want to mention my bad news, but one of my eyes started to rapidly progress sometime this past summer and has gone up a whopping 14 diopters and has thinned down to nearly 300 microns, although the “good” eye is also below 400 microns now. Fyi, you need a corneal thickness of 400 microns + for epi-off CXL, and I was a little above that in both eye pre-op. Some studies show that CXL thins the corneas further, but I likely had naturally thin corneas due to EDS even before KC showed up. So, there’s a brief update but I want to stress that I’m very cautious in my thinking now, especially due to having EDS as I worried CXL may not last after thinking about it (yet another post I wrote on here). My KC specialist is very stumped by the progression after nearly 4 years, but is testing out a theory before we look into other options.

      Per your question. I would never do PRK back then or obviously now! I wrote about this somewhere on my blog as I had a former corneal specialist mention it about a year after CXL as I am lens intolerant due to severe dry eye (I stopped producing tears from CXL, but that is very rare). I force myself to wear them to get around, but only for a few hours a few times a week. After the doctor suggested PRK, I looked into it and every study at the time involved a Greek ophthalmologist who was paid by the company that makes the equipment used in PRK surgery, so a huge conflict of interest. Also, many people–especially men–who have EDS are rather asymptomatic so I suspect a lot of KCers have EDS and don’t know it since they feel fine or they are sick but are misdiagnosed like I was. Unless you know for sure that you didn’t get KC from that, I wouldn’t risk it as I produce faulty collagen and heal horribly due to EDS and I feel that PRK would have just given me more corneal opacities–what I got from CXL–and probably caused my CXL to fail even sooner if it indeed has.

      Lastly, if you can see with glasses, count your blessings! Mild astigmatism would be a dream to me and once you mess with the cornea via surgery, even CXL, there’s no going back. I am wondering if the mild astigmatism you have is actually early-stage KC (irregular astigmatism) as that is much more likely and what I typically hear from KCers. KC is also a bilateral disease almost exclusively, so it does hit one eye before the other. Boy, I am really full of bad news today! I do think epi-off CXL is still a safe and effective surgery for most with KC if it’s progressing and the best time to do it is very early if you are lucky to get diagnosed at that stage unlike me, so my best advice would be to get epi-off CXL one eye at a time (if needed) and wait it out for at least 5 years. If you are still stable, then maybe there will be new research regarding CXL and PRK and you can make a more informed decision, but I don’t trust the studies I saw on PubMed and I don’t think I would do anything that doesn’t have some long-term, unbiased studies behind it.

      I hope that helps and best of luck to you. Please don’t worry about CXL as my story is very atypical and just make sure you don’t get sold down the river with “epi-on” CXL, which is my only option now due to corneal thinning.

      Hang in there and thanks for dropping by,
      A 🙂

      • Greg says:

        Thank you for such a quick response. I went to the DR. with some mild blurriness only in the left eye. Im a beast in the right. To be honest im only affected primarily when reading my phone or computer. Even at that, its a slight blur, primarily in bright settings and white type of fonts are the most troubling.

        Lets go back 2 months ago… I had a stye on my eye lid. Dr says “warm compress religiously”. so I go home for the next 2 months and compress the heck out of it. My guess is that I excessively rubbed until my cornea modified shape.

        Back to current state. They did a corneal map of my eye, dr says I have KC. That the rubbing may have induced it. I feel there is so much coincidence that i for sure need a second opinion.

        My biggest concern, if I do have KC, is nipping it in the bud now rather than later so it doesnt progress so bad that now im crap out of luck. But I fight with the fact that the US is so new to this. You are right, long term studies havent had a chance to be established yet.

        My cornea in my bad eye is 531, good eye 560. I am really hoping not to drop as the months go on.

        Thoughts?

      • Interesting. I used to do hot compresses as I have meibomitis (MGD), but have a suspicion that I had very mild KC in one eye for years before it went bonkers one day and then hit the other eye. I never rubbed my eyes and switched to IPLs for the condition as the compresses were making it worse. Plus, I was prime to get KC with my EDS, even though I got it at a very odd age: late 30s. There is old research that suggests a connection between eye rubbing and KC, but now doctors aren’t so sold and it’s looking more and more like genetics (collagen issues) cause KC more than anything.

        Your corneal thickness is fine! You can Google that to get the range, but you are in the clear for epi-off CXL as you’re above 400 microns. Is the KC progressing in your eye? That would normally mean that diopters are going up and the cornea is getting thinner, but I’ve changed that rule so I’d pay close attention to diopters more than anything. If it isn’t changing or not changing much, you can probably relax as you have time and maybe it won’t get any worse as some people have very mild KC that they only find out about when they go in for LASIK. Food for thought. I highly doubt you’ll go from, for ex., moderate to advanced KC in a couple months like I did as even my top doc is blown away by my case. And, having one normal eye is 1 million times better than having KC in both, ugh! So, presuming you don’t have EDS (or another connective tissue disorder) and aren’t progressing quickly, your cornea thickness shouldn’t drop like crazy (and your beast eye should stay unchanged). Can you see well with glasses or are you already in some type of RGP in the bad eye? That would also indicate the severity. I honestly was just chatting with an old blogging friend who wore glasses for her KC, had CXL (in the UK) the same time I did, and is still fine 4 years out and still getting by with glasses. I would trust the studies out of the EU on CXL as they go back to the late ’90s, just not the few on PRK/CXL (sorry for the confusion). Another thing you could do since your cornea is thick enough is get CXL–if you’re going that route–and then get intacs for better vision. I wouldn’t do it at the same time, personally, as CXL changed my corneal shape so much (both eyes) and I did get a lot of vision back. I would have waited until everything stabilized, but I never pursued it due to cost, corneal scarring/dry eye from CXL, etc. It is a safe procedure, but you need a doc who has lots of experience doing it.

        Those are my thoughts du jour…

      • Greg says:

        As far as if my KC is advancing? Not sure. Went to the Dr. Dec 3rd, “You have KC, see you in 20 Days.” I go back the 23rd, “nothing has changed, see you in 6 months”. As far as seeing, I dont wear anything. No glasses, no Contacts, no reading glasses. Never had, and never had a disturbance in my vision, until now. This disturbance in vision really butts up against the bump on my eyelid (which doesnt cause vision problems), and the constant rubbing and obsession of messing with my eye/eyelid to resolve the bump.

        Once that bump happened, and I started on the obsession of getting rid of it (compress, heat, pressure, massaging/rubbing the bump on the lid) i started to notice a blur when reading on my iphone. Once that happened i started to obsess with my vision by testing it constantly. Close right eye, perfect, close left eye, CRAP!

        As of right now, my daily activities arent too bad. It’s when i have to read still images and require true focus. Like reading an email, or a text, etc. TV, driving, life, not bad. Looking down at my radio or dashboard when driving… ugh.

        I actually read a 531 micron in my KC eye is pretty decent. “Thin” but decent, as i see alot of people have well below 500. Therefore, I would like to pursue any “option” prior to some crazy progressive thinning where a Dr. would say “cant do this, your cornea is too thin”

        I still have this problem accepting that I have a disease rather than just saying, “Greg, you damaged your eye by obsessively messing with it”.

      • I hope it’s okay to say lol. 🙂 I really didn’t freak out about my KC even though I was completely visually impaired from it and should not have been driving at all and could barely find things in a store. It was so hard to read my laptop until I adapted it, but I do have the brightness turned way down on here, as well as on my Android. Food for thought. While no doctor could Dx me for nearly a year as I live in a horrid medical desert/wasteland, I was more frustrated than anything–probably because I was already very disabled due to EDS so this was just more crappy icing on the cake. However, now I am freaking out about my KC due to whatever is going on with my left eye and I have a bit of OCD, so I can totally relate to covering one eye and then the other and thinking the worst: all those nightmares of failed transplants and guide dogs. This will not be your story! I am moderate in one eye and advanced in the other and at high risk for corneal hydrops now due to my left eye being at around 309 microns. The vision in that eye is so awful now it’s scary (legally blind from around 20/60 on the HD chart at the eye doc’s in just a few months) and I can’t tell if it’s getting worse so I’m doing a topography and pachymetry every 4 weeks via a much better local corneal doc, but with my crazy progression, what does it really mean when it stops for a month? I hadn’t been under the care of a good MD, like one who actually does yearly topographies, and was in the hands of an inept OD so I’m glad you’re more worried than I was, but as you can see from my blog I really thought I was out of the woods due to CXL.

        I know you were looking into a 2nd/3rd opinion and I would urge that, plus more follow-ups. It’s just that no surgery is without risk and if it is some oddball manifestation of KC that showed up and possibly will not get worse–and will not go away with CXL–then there is no need for surgery. The Dresden Protocol– the CXL that was in trials in the US like the one I was in–is only recommended for progressive CXL. I promise that you cannot lose enough microns in your stromal thickness from KC even in 6 months to be too thin for surgery as your corneal thickness is really just fine. I went up 14 D in a few months (crazy progression!) and didn’t lose that much thickness. If you can see w/o glasses, you are staged at super mild and I don’t even know how this is really affecting your vision like with other KCers, but I do believe you. I’m just wondering if something else could be going on, as well, or if the KC diagnosis is wrong altogether. It sounds more like you gave yourself a corneal abrasion that scarred over and those can be lasered off, usually. Nonetheless, don’t blame yourself as that would be the best outcome here. Corneal scars (opacities) can mimic KC vision as I have one behind my pupil (deeper down from CXL) and I would not be surprised if a doctor didn’t see it as that also happened to me. Did you (or can you) see a well-respected corneal specialist in your area? I’m just wondering if, per your topography, your diopters (D) are higher than normal and truly reflect KC or the abnormal “topo” is just showing a raised spot that could be a scar. The latter was suspected when I finally noticed my atrocious vision in my left eye, so it is quite possible. Anyway, I would definitely go more than every 6 months if it is KC as people tend to get anxiety from it; I wonder why??? A few things to think about and sorry for the novel (one reason I stopped blogging)…

  9. Joël von BRACCO says:

    Just had cross-linking in one eye, my doctors refused to give me codein, I only have 2 pills of tylenol a day. I have an important exam tomorrow (36h after the operation), and teachers refuse to cancel the examn because “it’s just one eye”

    I’m actually happy i’m not the oly one in this situation

    • Hi Joel,

      Yes, epi-off CXL is very painful! I had both eyes done at the same time in 2012 and couldn’t see a thing for at least a week on top of the pain, so I empathize. My surgeon did prescribe me a narcotic, but they make me sick so I told him to not call it in. I was given numbing drops to use every 20 mins I think, but those ended up making me throw up. What a mess. The 1st day was by far the worst. The second day I felt like I had glass in my eye vs. acid so it was a bit better, lol. It will get better little by little, I promise.

      Hang in there…
      A 🙂

    • You would think a doctor’s note would get you out of the exam. Jeez! Everyone needs to rest after surgery. Best wishes and this too shall pass.

  10. Lisa says:

    I have just had CXL. I supprised everyone because I have a bad pain threshold. Yet after the surgery once the drops worn off, all I felt was a scratch feeling, which I classed as more of a irritation than a pain. I had it done on 9/5/17 and was told for the next day, to put provided antibiotics in every hour. Went back on the 11/5/17 everything was healing nicely, got told to carry on antibiotics every 2 hours until 14/5/17 which was when I was to change to putting them in with the steroids 4 x a day. Went back on 18/5/17 where I got told everything had healed fine so I was allowed to stop the antibiotics but have to do the steroids for another 3 weeks. I am now awaiting my last appointment.

    One thing I will say is considering I didng suffer with pain from tge surgery. Since having the steroid drops in my eye, my eye now has a moderate bruized pain it which affects my head too. My sight isnt any better and varies from day to day. I had my surgery in Liverpool UK. All Drs and nursery in the department were fantastic, couldnt have felt more comfortable having it done.

    • Hi Lisa,

      Thanks for your comment. That’s great that your post-op went so well. I still say that epi-off CXL was the most painful surgery I’ve ever had! Wow. I was on steroids pretty soon after surgery and was so sick from them, but they will get rid of the haze that develops. They didn’t bug my eyes, but I got a rash from the preservatives in them so nasty stuff. Everyone reacts differently to steroids, though. I think it took a few weeks for that haze to clear so just hang in there. Once that was gone, my doctor let me stop the Pred Forte (steroids) due to how sick I was from them, but they did cause me to start losing a lot of hair just to warn you. That doesn’t happen to everyone and it will grow back if it does.

      Take care and glad you could get CXL.
      A 🙂 (In the U.S.)

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