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My experience with debilitating dry eye post LASIK (and how it is six years later)

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  • My experience with debilitating dry eye post LASIK (and how it is six years later)

    About six years ago, I had LASIK for the first time. I had really bad vision (about -5.00) and contact lenses were too uncomfortable to wear. It's not that I refused to wear glasses... it's that I felt utterly useless when waking up, going swimming, looking for my glasses, etc. I didn't want to be so dependent on something that was not attached to my body.

    After hearing great things about a particular surgeon and personally knowing some success stories, I decided to do it. The first procedure was smooth. Very smooth, in fact. I followed doctors instructions as well as tips from other LASIK patients I knew and stayed in a dark room for the first three days. There was very mild dry eye, but it went away in weeks. I felt good about it.

    But about a year and a half later, my vision was at 20-40. It was still miles and miles better than it was prior to LASIK, but I was squinting more. The doctor explained that a certain percentage of people require a touch up, and it's common. He assured me that two touch ups would be a very rare case and the one touch up should do it for about ten years.

    Here's where I made the first mistake:
    The particular LASIK package promised free touchups within the first two years. So I felt pressured to fix it sooner rather than later. I don't think my eyeball layers had fully recovered, and if it weren't for the package deal and wanting to save two thousand dollars, I definitely would've waited longer.

    I got the second procedure. The doctor himself was excellent, but I think the nurses could've been less assuming that I remembered protocol. Hammering in the post-op care, even if I've done it once before, is still important. I was a little resentful that they didn't explain things as carefully as the first time.

    I remembered to stay in a dark room for the first three days, but feeling confident and absolutely fine I decided to go out for a night with friends a week after surgery. It was a very, very windy night. Wind pounding against freshly shaved eye lids. I was dumb. Early 20s. Really dumb. That was the second and much bigger mistake.

    That's when the hell started.
    My eyes hurt so bad, they constantly felt dry. Way worse than the mild dryness I experienced for a couple of weeks after my first procedure. It was like sand paper. Preservative free eye drops were purchased in large quantities - hundreds of dollars a month. I needed them constantly and desperately, and yet they provided such little relief. Nothing made it hurt less.

    I was not only feeling immense pain when my eyes were open, but even closed. In fact I almost always had my eyes closed, or at least one eye closed. It hurt too much to open them. I went back to the doctor several times. He acknowledged it was a little dryer than we would want. He wrote me an rx for a mild steroid drop which did help curb the throbbing slightly. But the problem was much bigger. I desperately needed drops. Constantly. I had humidifiers in my room, compresses... my eyes required- no, DEMANDED more around the clock care than a newborn. The pain was excruciating and constant. I felt like I had made the biggest mistake of my life.

    At that time I felt extraordinarily afraid. When chronic, unbearable pain is a part of your day every day, it's easy to forget what it's like to feel okay, and it's terrifying and all too easy to imagine that it will never get better. When months go by, even a year, two years, and it's still horrible....it's scary, frustrating and so many more things. During this period I sought great comfort from words written by people who had been through what I was going through, and the many assurances that it really does get better. Some of the tips I pulled also helped me. I read them daily, sometimes several times over. They were such an integral part of not feeling alone during this time, and I was so grateful for them.... so I vowed to one day write my story of healing. I had to believe I was going to heal, as discouraged as I often felt.

    I'll tell you the things that helped me:

    1) mild steroid drops. Alrex was the one I used.
    2) punctal plugs. I had a semi-permanent kind that would last months, and then require replacement when it would fall out. It kept my scarce tear and moisture production from draining.
    3) Zatidor or Pataday. Then again, I have allergies.
    4) onion goggles (not attractive but one of the few ways I could keep my eyes open and not feel like someone was sanding my eyeballs)
    5) lots and lots and lots of herbal tea, constantly. Staying hydrated.
    6) humidifier.
    7) moist, hot compresses like a microwaved wet towel or a microwaved blepharitis bean bag pillow
    8) healing the rest of my body to aid it's healing ability. Deep tissue or thai massage, yoga, so much green juice. Getting healthy. When I focus on my posture and optimal wellness my body has an easier time healing.
    9) finding and seeing a GOOD chiropractor.
    10) icing my eyes with a paper towel covered ice cube for 30 seconds each twice a day.
    11) refresh preservative free drops
    12) night time refresh gel for below the lid.
    13) gentle eye wipes, morning and night and after showers.

    The things mentioned absolutely did help, but only slightly. Every day was still eye throbbing hell. These tips basically took the edge off of the pain (sometimes). I was still scared, and healing was so slow that I didn't think it was healing.

    About two years later, still keeping up on these tactics and still feeling horrible, discouraged, and scared, my dad got me an appointment with one of the top eye doctors in my state. I had already been to so many eye doctors, and nobody had anything useful to say. They would just offer me different types of eye plugs and renew my prescriptions. There wasn't much more this highly rated doctor could do for me than the others. However, he gave me one great piece of advice that began the next phase of healing:

    Cut out the Restasis.

    (might not be the right advice for everyone, but if your story bears similarities to mine and you are still struggling, its worth talking to your doctor about this. It was the best thing I did for healing.)

    I had come to feel so dependent on it. Cutting it out felt counter intuitive to me, but I'm so glad I did it. My eyes began to feel human again. I felt marginally better in the course of the following year or two, keeping up with good habits and self care.

    Well, life got busy and I'm not sure when, but today, a six and a half years later, I don't use any drops. I stare at my tablet for hours (not saying it's a good thing, but my eyes are fine). Last I checked I still had 20-15 vision. Today I often forget that for a significant period of time it was such a big obstacle in my life.

    It took a few years, and it was a really rough and scary time. My biggest fear was that I was not going to heal. The posts from others on sites like this really helped me maintain hope in the darkest days, and it's about time I kept true to my vow of reciprocation. This is my story of healing. It's tough, it's scary, but it really does get better. Eventually.

  • #2
    Hi mash , whats was your diagnostic? Aqueous deficient or MGD? Did you had inflammation in your eyes or no? My problems began three months after Lasik when i used Steroids Dexamethasone , since then i have a big inflammation who doesnot heal thanks to other steroids... or Cyclosporin... Thanks for your answers

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    • #3
      Hi Peter,
      I fell into the aqueous-deficient category, and also had inflammation. I'm sorry to hear about your issue with steroid drops. Sending positive healing thoughts your way!

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      • #4
        thanks for your post mash2011. I had Lasik 10 months ago and have severe dry eye. was diagnosed with MGD, but since a lot of the MGD treatments arent working, my doctor things the cut corneal nerves are playing a bigger part in the dry eye. Which I guess would be aqueous deficient? I do pretty much all the things you did. I only used restasis for the first few months but my doctor thought it was useless so I stopped. I guess time is what I need. but its so hard to see a light at the end of this. every day is a struggle. Thanks for your post

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        • #5
          Thanks Mash for your post. I am over 2 years in and still struggle with it but things are better than the first year. I hope your recovery continues. So good to hear you are out the other side.

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          • #6
            I had my Lasik done in December 2014 and have been suffering from Post Lasik Corneal Neuralgia/Dysaesthesia ever since. For me the schirmer score has always been absolutely normal and TBUT has been more than 12 seconds. My eyes do not have any noticeable dryness. I see floaters, halos and have light sensitivity (but i am fine with it ). I have gone through extreme suicidal pain/burning and dryness (my damaged corneal nerves keep sending wrong signals to my brain making my brain feel that my eyes are extremely dry even when they are completely wet). Almost everyday I have unbearable dryness sensations in my eyes that does not even let me sit in office. I was on leave for 2 months. I have tried putting artificial tear drops every 5 minutes (I am not kidding every 5 minutes). But they just do not help at all. I have tried all lubricating eye drops available in India and many eye drops from US as well. Long story short. my eyes are killing me and I have suicidal thoughts. and I may never be able to get married. It is actually difficult for me to sit in front of a computer screen and type but I have recently logged on to this wonderful website so that I may get some help from fellow sufferers. I am somehow holding on to my job as I work in a govt bank and they have given me comfort level (I only have to make phone calls and just 1 hour of computer work. That is also very difficult for me). I have tried all possible treatments. I am currently on 100% autologous serum and restasis. I am yet to try scleral lenses but the doctors feel they will not help as mine is not a dry eye issue but corneal nerve regeneration issue. I have had no relief even after 26 months of Lasik. It has only become worse. Imagine waking up with unbearable pain, burning and dryness every single day of your life. I don't have words to describe my agony. I can go on and on but want to make this post short (readable).

            Mash,

            It is great to know that you have recovered. it does give hope to others. Did you have a genuine dryness in your eyes or you had neuralgia ? Any others having neuralgia/corneal nerves regeneration issue ? Any suggestions will be greatly appreciated.

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            • #7
              Neerav1989 I am so sorry for what you are going through. I had Lasik April 2016 and have severely dry eyes. Mine does not sound as bad as yours but I completely get how debilitating it is. If you are on Facebook you should join the Lasik Complications group. several people on there talk about their corneal neuralgia and what they are doing to treat it. I believe there are medications and I think sclerals could definitely help too. I dont have neuralgia and pain but my doctor believes my issue is also a nerve regeneration issue. Most peoples grow back within months but some can take much longer. You should also look into Prokera or another kind of amniotic membrane treatment

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              • #8
                Neerav, I understand how you feel. I feared the worst-- that I had absolutely ruined my life. It hurt to do anything. My days were spent crouched directly over a humidifier, eyes closed, drops in hand, drinking tea religiously and I was still in unbearable pain. I am so sorry you are going through this now.
                It also felt like it was getting worse before getting better for me. My doctor told me the pain was from the cornea being scraped too thin, and this is why my eyes continued to feel dry even years later. For the first few years, I produced very little moisture for the Schirmer's test, and was diagnosed with dry eye. However, even after my eyes started producing moisture, I still had the excruciating pain. It took time for my cornea's to heal.

                Please hang in there. Someone later on, perhaps your future wife, will thank you for hanging in there during this incredibly hard time. I recommend doing everything you can to help your body heal, and also talk to your doctor about Restasis. for me, that was a turning point. I felt i deeply depended on it, but when I stopped it, within months I started slipping out of agony and into more manageable pain. From there, it was a healing track.

                I do yoga, I stay hydrated and eat healthy, and a lot of these practices stemmed from that horrible time, when I was desperate to do everything I could to get out of pain. The human body is an amazing thing, please don't lose faith. I know it feels like you should be all better this much later. For me healing time was probably about 4-5 years total, with the first 4 being excruciating.
                Also, if you haven't tried onion goggles- I recommend them. They really helped take the pain level from excruciating to slightly less excruciating, whereas most things did little to nothing to alleviate any pain.




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                • #9
                  Clair, it absolutely is rough. I remember how each and every day was its own hell, and it felt like I had to sit out on life because of the pain. At only 10 months in, it does sound like time is what you need. Eyes heal so slowly, so so slowly that it truly feels like they aren't healing at all. That's what was so hard about it. It felt like no improvement. It becomes impossible to believe it will ever get better if you can't notice any single improvement with it. But its time. Give it time, and hang in there. I'm not sure if what we have is exactly the same, I don't remember being diagnosed with MGD. The doctor said it was a corneal issue, and the corneal layers being too thin. I don't think mine was a nerve issue, unless the cornea itself is considered a nerve. I'm not a doctor but I am reading that it is densely populated with nerve fibers, so perhaps my corneal nerves were affected.

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