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Floppy eyelid syndrome

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  • Floppy eyelid syndrome

    Hi all,

    FES is a condition that doesn't get discussed very often on this board so I'd like to see if some people who have it could come out of the woodwork and pool a little information.

    People with floppy eyelid syndrome may literally rub their corneas on their pillow , causing (obviously) erosions and sometimes serious damage. It's much more challenging to treat than standard lagophthalmos because the type of gear we wear for that may come off under the treatment it'll get by an FES patient.

    I'm going to post the text of an email I received on this recently, and also my reply in case it's helpful to any readers with this condition - and if you are an FES patient with some useful suggestions I'd GREATLY appreciate your input.

    Hi Rebecca,

    The reason my dry eye has not resolved itself is because I literally bury my head in the pillow when sleeping (on my right side). I have tried consciously changing to my left side but end up rolling over during sleep. I find I end up removing most of the eye patches available on the market during sleep. If I can overcome this my symptoms will be resolved as my left eye is not bad at all (I could keep a contact lens in all day) compared to the right which is twice as worse. Most of the eye patches are uncomfortable, need to find a solution.

    Dr. X in January said diagnosis is floppy eyelid syndrome. The right lid can be everted easily and he said there are corneal wrinkles (epithelial cells). Very frustrating as how does one change sleeping habits.

    Any thoughts? Feel free to share with others withholding my name.
    My reply:

    I hear from people with this condition pretty frequently and I'm surprised it doesn't get discussed more on the bulletin board ( I don't have any info on changing sleeping habits - that's a toughie.

    But the products I'd tend to recommend first for this would be:

    1) post LASIK style goggles (like the simple sleep goggle I have in the shop - only the picture is now inaccurate because they don't make that one anymore) - the point with those is it's got a rigid front with a gap in front of the eye so you CAN'T rub your cornea on it no matter what you do during the night, and it's hard to remove. - They are not the funnest things to wear, for sure, but they work.

    2) Expensive but maybe better for your case:
    Medtronic NITEYE bubble eye bandages. Never used them myself so I can't comment on the type of adhesive they have but they're basically a plastic bubble over each eye with an adhesive. They are single use and expensive. But every once in awhile I run across someone for whom it's been just exactly the right thing. I don't sell them because I can't get the manufacturer to sell to me but here's a link:

    Depending how gentle the adhesive is, that's probably what I'd be trying if I were in your shoes.

    One other thought - bear in mind I have NO knowledge about this for your specific purpose (never heard of it being done, and for all I know there might be medical reasons against it) but it's something that came to mind and it might be worth asking your doctor about:

    You know how people with poor lid closure get gold or platinum weights implanted in their eyelids? Well, I read awhile back about a product that lets you put a weight on with an adhesive for use just at night. Here's a link:

    If your lids evert very easily I just wonder if this might possibly help them stay put. What I'm thinking specifically is that if you had one of these on the lid while ALSO using a really good protective goggle or bubble eye bandage at night, maybe somehow it would help 'retrain' the lids.

    edit... On second thought the weight might backfire (the weight might pull the lid back depending how your head is oriented). Need dr. input on this.
    Rebecca Petris
    The Dry Eye Foundation

  • #2
    My mom had this and had surgery to correct it. She's doing better now.

    Thanks for posting it, Rebecca!


    • #3
      I was diagnosed with FES about a month ago and will soon undergo testing for Sleep Apnea. I've always been a side/stomach sleeper, almost identical to the patterns described above: "I literally bury my head in the pillow when sleeping (on my right side). I have tried consciously changing to my left side but end up rolling over during sleep." My left eye is fine, the right (because it's buried in the pillow) was often feeling raw. Contributing to the mix are concretions and dry eye.
      Following a scleral scraping, I'm now using RefreshPM at night, and/or Refresh Celluvisc, and using a taped on eye shield. I'd love to use an eye mask, but, so far, every one I use has twisted across my face, once directly scraping my eye. I've tried to retrain myself to quit sleeping with my face in the pillow, but it's been a fruitless effort. If anyone has suggestions, I'm really open to them. So far, I've tried using the bulky mask to make it uncomfortable to sleep on my face, switching pillows, self-hypnosis. With the taped on eye shield I can revert back to sleeping with my face in the pillow...
      thinking of trying the post-lasik goggles for a while!


      • #4
        RE: nighttime eye occlusor

        I recently bought a couple of boxes of these:

        They are absolutely great! They don't stick to the lids so it's not like peeling off tape the next day (OUCH!) and they stay put once on. My eye surfaces LOVE them!

        The teeny-tiny problem was that I woke up with a two well-defined, raccoon-type, red rings around my eyes the next day. I'm obviously allergic to them!! BOOHOO!

        But I would highly recommend these to people who are not allergic.