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Hello - RCE and Map Dot Dystrophy - Help Please

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  • Hello - RCE and Map Dot Dystrophy - Help Please

    Hello, I知 Carl a 44 year old male from the UK and a year ago I started getting these excruciating pains in both my eyes which after numerous attendances to a&E and the emergency eye clinic I now know are recurrent corneal erosions.

    The drops help throughout the day, Hycosan Extra work best for me but at night time the ointments no longer work, have tried Lacrilube and Vita pos. In April I ended up with very large erosion that stopped me from opening either eye for over 24 hours due to the pain being so severe.

    I was seen in the emergency eye clinic and was given a corneal scrape, debridement I believe it痴 called and a band aid lense fitted.

    They also stated it looks like I have map dot dystrophy and would refer me to see a specialist.

    After the lens was removed the erosions started again and now while I知 still waiting to see the specialist over these past three months I致e endured waking up two to three times during the night in agony as my eyes keep ripping while I知 asleep. I put the ointment in at night lots of it then I wake up in pain add drops, then again a few hours later it occurs again.

    The other day I actually woke up needing the toilet and my eyes were still shut but I could feel my eye balls were stuck to my lids.

    Does anyone know how to stop this happening, or is it at the point where I need to wait and see what the specialist says?

    In addition around once a month I get a massive blister in my eye on either the left or right of the pupil, happens in both eyes, it eventually goes down after I keep adding lots and lots of eye drops, has any one any experience of this or know what it is?

    I have also noticed my glasses prescription seems to have changed in the eye I had the debridement in, is this a side effect of the procedure or the ongoing result of all the nightly trauma I知 going through?

    Sorry for all the questions, I always keep hydrated (four to five pints of water a day) eat a well-balanced diet and I知 at a loss to find a way to stop these erosions from happening every night and wish I could get my eyes back to normal after a year of pain and tiredness.

  • #2
    Hi Carl
    Sorry to hear about your story.
    Maybe this communication exchanges would help you something - especially morning/mid-night pain

    Briefly, I think you should treat this erosion ASAP otherwise only get more damages (to cornea and dry eye/MGD - for my case).
    I did puncture which failed, then PTK which solved the problem but the eye with erosion often suffer more - more glands are gone for this eye too.

    I suspected you also have MGD like me, wise to find a expert to check your glands - dr muss press glands by finger etc to check their function as glands could look very normal but no function (= no (clear) oil secrets when press).
    Last edited by MGD1701; 20-Jun-2017, 12:39.


    • #3
      Hi Carl. You might want to check with your doctor if you are a candidate for scleral lenses, given your eyes did better while wearing bandage lenses.

      Sclerals are nickel-sized dome-shaped rigid gas permeable lenses that vault over the cornea bathing them in saline all day, and the lens edges sit on the white sclera part of your eye. There are people who have RCE and map dot dystrophy who these lenses have helped, however not everyone can tolerate sclerals. I didn't post earlier to you about it because I read you periodically get blisters to the right or left of your pupil, which I'm assuming is on the sclera where the lens edges sit on, so if the blisters cannot be controlled, you might not be a candidate for these lenses right off the bat.

      But wanted to give you this info just in case you wanted to ask about it. The Boston PROSE scleral website has a good general description, and I also found another website as well, but there are several different brands. I wear the PROSE sclerals 12+ hours a day, and it helps a lot while I'm wearing them, and my eye surface seems to be in better condition after I take them off too. I believe sclerals are available in the U.K. at Moorfields and Oxford NHS hospitals.


      • #4
        Hi, many thanks MGD1701 and Hokucat, some very interesting things to think about, ive managed to get my appointment with the specialist brought forward and im now seeing them Friday so it will be interesting to see what they bring up in relation to what you have said.