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  • Help me please!

    My story begins three months ago when I was deemed an excellent candidate for the new "Raindrop" lasik inlay to address presbyopia. Fortunately, it was only placed in one eye, so at least I still have one good eye remaining. But that doesn't really make things any easier. From the start, I had problems that the ophthalmologist deemed "normal healing," however soon after, the doctor found I somehow got a corneal abrasion and the lasik flap had not closed. The inlay itself appears to be fine, with no signs of rejection.

    The first doctor referred me to a second one who over the course of the next six weeks, treated me with a corneal bandage, and implanted three amnio (dehydrated) membranes (not Prokera). Each membrane advanced the healing of the cornea, and the flap finally appeared to be closed. However, the problems were just beginning as I now entered the new world of dry eye.

    I am in pretty constant pain, although it is better in the morning, but disabling in the afternoon and evening. I cannot really work and fear I will have to go on medical disability. I have a very supportive and loving family, but they are frightened and frustrated for me. I have no real life anymore, outside my eye drops and humidifier. I cannot spend much time on devices, can't watch tv, can't go out to dinner with family. I lie in bed in the evenings and think about suicide, but am trying to believe there has to be a solution somewhere.

    Last Friday I saw a third doctor. She is reputed to be a top ophthalmologist. She did a very thorough exam and diagnosed the problem as a remaining problem with a weakened and slightly wrinkled flap. She prescribed prednisolone drops 4x per day and Restasis for both eyes 2x per day. She told me to come back in a month and if the flap does not straighten on its own, she will smooth it manually. The doctor feels very confident this will solve my problem, but I am dubious and skeptical after reading so many posts from people on this forum.

    I have only been taking the medications for two days, so I know it's too early to really evaluate their effectiveness yet on the inflammation or dry eye. Can anyone tell me how long it usually takes for prednisolone to reduce inflammation? So far I feel absolutely no relief.

    Inflammation is my biggest problem right now. My eyesight is fine, no more light sensitivity or blurriness, but pain is real and pretty much unending despite cold compresses and hourly artificial tears. Last night I resorted to Vicodin and Ativan out of desperation, but I hate taking these addictive pain and anxiety relievers.

    Tomorow I go to donate blood for autologous serum drops. I desperately am hoping this will help, but I still have to wait two weeks for it to be ready and I honestly don't know how to get through each day until then.

    I am finding it so hard to believe my doctor really understands the full picture. She is focused on the "wrinkled flap" issue more than the dry eye, but it is the dry eye that is destroying my life right now. I was in so much pain last night, I called the emergency phone number. The doctor on call said "dry eye is a complicated disease that takes time to resolve. Prednisolone and Restastis are the best tools in the fight. Keep taking them as prescribed." She could not offer any short-term solutions whatsoever.

    If anyone out there can answer any of my questions, I would be truly grateful. How long does prednisolone usually take to reduce inflammation? Restasis to relieve dry eye? How long? How can I reduce the debilitating pain in the evenings? What else can I be doing? I eat a healthy diet (when I have an appetite which is rare these days), lots of Salmon and omega 3 supplements, drinking green tea with lemon, avoiding sugar.

    I am enduring paralyzingly pain and fear and could really use some help from anyone out there. Thank you so much.


  • #2
    I really feel for you as I'm in a similar situation, mine isn't due to LASIK though. Sleeping resets things a bit but the discomfort and soreness is always there and by afternoon it's become debilitating and by evening... well you know it already. Eye appointments are earlier in the day and they can't really see me at my worst. I show them pictures on my tablet and they can barely believe what they're seeing based on what they see when I'm in the clinic. It's really hard to convey how it affects my daily life...

    The wrinkled flap issue could tie in as if the eye isn't smooth then it might be harder for the tear film to spread evenly. It's good it's no longer affecting your vision. I still have blur, double vision, glare etc. sadly.

    Steroids are typically short term so I guess you might expect to see something soon, if you go on long term steroids be sure to get eye pressure checked due to glaucoma risk and eyes dilated to check for cataracts risk. Restasis sadly can take months to work, 3~6 months I think some say. Some find the newer Xiidra works quicker for inflammation but everyone is different, some use both Restasis and Xiidra. I wish I could try Xiidra in the UK here as have already been on cyclosporin (Restasis / Ikervis) for months.

    It's great you have access to autologous serum. Here in UK the NHS doesn't allow for it much so I'm have just started fingerprick autologous blood which isn't fun, serum bottles would be easier, and like you I'm also impatient for pain relief but am told another patient found it took 3 months for the fingerprick autologous blood to settle.

    After this I'm considering pursuing scleral lenses. I've never worn contacts before so it'll be tricky and there aren't many fitters in UK, but I'm desperate... In the US you have a lot of great options like LaserFit, PROSE, etc.

    I had Prokera Plus in my worst eye and I did find it reset the inflammation and severe pain for awhile but didn't last long enough in my case. It could be worth a shot though as another member here with LASIK induced dry eye did find it very helpful:

    http://www.dryeyezone.com/talk/forum...done-yesterday

    I'm assuming you're in the US and you're in a good position there as new eye treatments often seem to hit there first. There's lots of things in the pipeline like lacripep, lubricin, RGN-259, tavilermide, SYL1001, rhNGF, ADX-102, BRM 421, TOP1630, etc. which regardless of their origin seem to hit the US market first. For example the people developing TOP1630 seem to be based in London but are doing their study in the US, I guess UK regulations are just too tight.

    In the meantime I'm trying every single artificial tear / lubricant / ointment on the market as scarring from my condition stopped my lacrimal and meibomian glands from functioning and possibly my goblet cell count. So far Hylo-Forte and Retaine MGD / Cationorm are the ones that don't sting for me but everyone is different, I also use VitA-Pos and Xailin Night ointments. VisuXL stings a bit, especially later in the day, but sticking with it in case it helps my steroid-induced cataracts. I've previously tried and stopped Systane Balance, Hylo-Care, Hylo-Dual, Clinitas, Thealoz Duo Gel. Next I'm trying Moorfields Emustil and Carmellose PF, Lumecare Advance and Evolve, EvoTears, Thea Liquigel and Duo without the gel. I try to avoid anything with preservatives or phosphates. In the US Refresh released a new one called Optive Advance Mega-3.

    I also do warm compresses twice a day, Ikervis once a day, eyelid hygeine with Ocusoft Plus / Optase tea tree wipes / iLast Hydraclean / fractionated coconut oil, drink smoothies with 'stuff good for eyes', drink citrus green tea, take Vitamin C / Omega 3 / Astaxanthin, use a desktop humidifier, etc.

    Previously I had long term steroids (Dexamethasone/Prednisilone) and antibiotics (chloramphenicol/levofloxacin) and a bandage contact lens. Back on a chloramphenicol antibiotic ointment while doing this fingerprick autologous blood thing.

    I hope you have relief soon. Wish I could make this all go away with a snap of my fingers for both of us. Let us know how you get on.
    Last edited by PhoenixEyes; 16-Jul-2017, 08:13.
    Sufferer due to Toxic Epidermal Necrolysis.
    Avatar art by corsariomarcio

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    • #3
      Hi
      How about collecting all facts - such as MGD/glands or water problems? If MGD, oil/glands status? then you can perform right/effective treatrments as if your oil is thick, you need either higher heat or longer time for warm compress. Also need to find out causes (Vit. A, D, medication, etc). All need to be tackled step by step and at the same time.

      Inflammation:
      It is very important to put under control first. Do you know the trigger? demodex or bacteria?
      For bacteria many doctors in USA use lid cleanser with hypochlorous acid, like Avenova or Ocusoft Hypochlor, etc. -
      they believe this is effective/safe then patients do not need antiboatic drops which could develop resistence.
      For demodex - tea tree oil is effective.

      Goji berry is also effective to deal with inflammation. It has rich Vit. A, C, iron, zinc etc. Just today, I tried Goji x15pcs, green tea and fresh lemon. Seems a good combination.

      mid-night pain: maybe wear swimming google when sleep would help.

      warm compress, lid hygiene are important before bedtime for MGD (especially if you suffer mid-night pain). I also do twice a day, even now my doctors just confirmed recently that I do not need compress any more as ALL my alive glands are functional (took 1 year to get them working) - so you can do it, too.

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      • #4
        Thank you Phoenix Eyes and MGD1701 for your thoughtful replies. My inflammation is not bacterial, it is non-infectious conjunctivitis riding along the back and right side of my eye.It sounds so minor, but the pain is unending. Good suggestion to look into MGD status. In addition to my ophthalmologist, I have made some appointments with doctors who may know more about the ins and outs of MGD and dry eye. They call themselves dry eye specialists. We'll see if they can offer anything useful. Right now, I just wish the inflammation could get under control. It is torture. Still only been two days with the prednisolone. I guess that's not really enough time to see if it's working. Thanks.

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        • #5
          They can diagnose meibomian gland dysfunction by examining the glands or doing Lipiview, also lacrimal gland scarring by turning eyelid up.

          The inflammation for me starts from the outer edge, spreads along the bottom and in the worst eye covers the whole of the white part of the eye by the end of the day. And yes I agree it is pure agony.

          Hopefully you get more answers at your next appointment.
          Sufferer due to Toxic Epidermal Necrolysis.
          Avatar art by corsariomarcio

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          • #6
            Hi Phoenix and norabo
            Could you please satisfy my curiosity, where such inflammation come from? injury? is there name for such inflammation?
            This can lead to dry eye too? Thanks!

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            • #7
              Dry eye causes inflammation

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              • #8
                Yes, if your eye is dry due to lack of lacrimal gland function (aqueous deficient) or lack of oils (meibomian gland dysfunction) or even a lack of mucin (goblet cell deficiency), then there are gonna be gaps in your tear film which would otherwise protect your eye from exposure to the elements and friction from your eyelids. All that irritation causes inflammation in much the same way bacteria, demodex, allergies and other irritant causes of dry eye leads to inflammation. I have punctate keratitis / epithelial defects on flourescein dye tests due to dry eye.

                Phillips also posted an article recently that points to chronic heparanase activation even after a trauma, injury or infection has healed. Maybe there are more inflammatory mediators that also don't switch off because of the missing components of a healthy tear film after trauma that would normally down regulate them after the threat has gone.

                http://www.dryeyezone.com/talk/forum...ole-in-dry-eye
                Sufferer due to Toxic Epidermal Necrolysis.
                Avatar art by corsariomarcio

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                • #9
                  Hi Phoenix and Norabo
                  Omeg 3 also can reduce inflammation. I eat lots of nuts/seeds daily with salad or oil for cooking and my level is almost double than normal.

                  Regarding to lack of mucin (goblet cell deficiency)
                  I often have swimming/clear discharges (=mucus strings) which hard to get them out. Any idea what are the causes?
                  I asked doctors but they think it is a minor issue and never told me solutions. Thanks.
                  Last edited by MGD1701; 17-Jul-2017, 04:28.

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                  • #10
                    Originally posted by MGD1701 View Post
                    Omeg 3 also can reduce inflammation. I eat lots of nuts/seeds daily with salad or oil for cooking and my level is almost double than normal.
                    Already been taking Omega 3 for awhile now unfortunately. Also taking Astaxanthin which is supposed to increase efficiency of Omega 3.

                    norabo mentioned they eat lots of salmon and omega 3 supplements.

                    It does indeed reduce inflammation for some though, everyone is just different sadly.

                    Regarding to lack of mucin (goblet cell deficiency)
                    I often have swimming/clear discharges (=mucin?) which hard to get them out. Any idea what are the causes?
                    I asked doctors but they think it is a minor issue and never told me solutions.
                    EDIT: Thought you meant eye floaters at first but just read again, do you mean mucus strings? There's mucus fishing syndrome.

                    https://www.ncbi.nlm.nih.gov/pubmed/11712630

                    https://www.google.com/search?q=mucu...dryeyezone.com
                    Last edited by PhoenixEyes; 16-Jul-2017, 18:45.
                    Sufferer due to Toxic Epidermal Necrolysis.
                    Avatar art by corsariomarcio

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                    • #11
                      Phoenix - thanks a lot.

                      Omeg 6: did you check if your omeg 6 is too much, as it causes inflammation too. A canadian said omeg 3 + omeg 6 together is ok. but not sure the ration.

                      (raw) garlic (I cut in small piece and leave for 10-20 min before taking them for better results) and ginger also good for anti-inflammation. I eat them almost daily too.

                      Comment


                      • #12
                        Hi norabo. It's a good move you are planning to see a dry eye specialist. Besides checking for MGD, they can check your TBUT and Schirmers to see if these scores are low, which could help diagnose where the inflammation or dryness is originating from.

                        From the LASIK, besides the wrinkled flap, it's also possible you had some corneal nerves damaged, which can mimick dry eye symptoms and pain. The doctor would need a confocal microscope to diagnose this.

                        Given the amino membrane treatments helped your cornea heal, you might benefit from continuing protection of your cornea and symptom relief from scleral lenses, as PhoenixEyes mentioned. Have heard of a few doctors that also had patients put a few drops of autologous serum tears in the lenses daily, so it could stay on their eyes all day. You likely would need to resolve the conjunctivitis before trying sclerals. Not everyone can wear these lenses, but if you can, it has provided several LASIK and other dry eye patients with varying degrees of immediate comfort.

                        http://www.bostonsight.org/PROSE/PRO...ats/Post-LASIK

                        Since your pain worsens as the day goes on, it may help to wear moisture goggles at night (TranquilEyes, EyeSeals), and air shields/goggles (7Eye and WileyX are some favorites) during the day, including indoors.

                        Hang in there norabo, it can get better. You are doing all the right things seeing other specialists and asking questions in this forum.
                        Last edited by Hokucat; 17-Jul-2017, 01:47.

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                        • #13
                          Originally posted by Hokucat View Post
                          You likely would need to resolve the conjunctivitis before trying sclerals.
                          I have chronic inflammation on the sclera of my left eye but the inflammation was temporarily reset by Prokera amniotic contact lens so I'm hoping scleral lens may still help despite the constant redness. Eye doctors I've seen are concerned about my punctate keratitis posing a greater infection risk when I asked for bandage contact lenses though. I'm desperate for pain relief however... As I'm in UK I think it's also harder though to get a good fit, no LaserFit etc. technology and also don't think they use plasma coating so they might cloud more. =(

                          air shields/goggles (7Eye and WileyX are some favorites) during the day, including indoors.
                          I second this. I use Ziena Verona ones inside and out.
                          Sufferer due to Toxic Epidermal Necrolysis.
                          Avatar art by corsariomarcio

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                          • #14
                            Hi PhoenixEyes. Given you are in the U.K., if it's at all possible for you to go to one of the Boston PROSE centers U.S. on the East Coast, that might be ideal given your more complex circumstances, and their fitting expertise and vast network of experience treating a wide array of conditions. Sclerals are expensive, and the fittings can be tricky, so you want to have the best chance of success with a top fitter.

                            I was very impressed with my PROSE doctor because it took her just one fitting to get it right for me. We did do a second pair of lenses to tweak the vision correction slightly, but both were the same fit, and she had me keep both pairs of lenses so I'd have a backup. And when I have questions I can email her, and she usually gets back to me within 24 hours.

                            From looking at the Boston PROSE website, their success with SJS/TENS patients is very high. I know you may have other complications, but good to know they have experience in this area.

                            http://www.bostonsight.org/PROSE/PRO...hnson-Syndrome

                            That's just my two cents, as some people end up not being able to wear sclerals or are uncomfortable with their sclerals because their fitter may not have had enough expertise and experience. With your situation it could be more complicated, so want you to have the best chances possible!

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                            • #15
                              Thank you Hokucat. I appreciate your kind input and am really glad to hear you had such a great experience with them. I wish I could travel abroad but can't afford it sadly. I asked a local scleral fitter and they said due to the complications of my case I'd be best to go to Moorfields / Innovative Sclerals.

                              I just started doing fingerprick autologous blood though so guess I gotta wait and see. Pain just makes you impatient!
                              Sufferer due to Toxic Epidermal Necrolysis.
                              Avatar art by corsariomarcio

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