I’ve been wanting to post this for a while, but it’s hard to effectively describe what’s going on and my thoughts about it.
Would love to hear from anyone experiencing anything similar, alternative theories or suggested treatments.
Clinical signs
What I experience
So I have a problem with trying to reconcile clinical signs with my symptoms, at least in this regard. It’s frustrating to be told that I have no problems with the glands, and to not really be listened to. I am sick of feeling alone in trying to diagnose my own problems and get the treatment I need.
But to my mind this indicates that I can now systematically produce good oils and my problems are localised to a few glands. The huge relief (ecstasy really) I occasionally feel when the blockage occasionally clears indicates to me that this is now about 80% of my problem.
I am booked for a gland expression with possible probing. I think this means only glands unable to express anything will be probed. I suspect something will come out of even my bad glands, so not sure how useful this will be. I’m also wondering if I need PRP or similar injected into the glands to stop them producing the ‘toxic’ meibum
I think I would actually feel significantly better if these glands were somehow just removed, if that is even possible. Obviously it would be better to have them unblocked and expressing good oil somehow but maybe this would work as a last resort?
Would love to hear from anyone experiencing anything similar, alternative theories or suggested treatments.
Clinical signs
- Meibography is good, indicating no significant dropout or problems.
- Lipiview lipid layer thickness: Now 100 in both eyes
- TBUT 8 seconds (1 second a year ago).
- At most recent exam, no problems with oil or glands detected (expression with cotton bud, but not of every gland).
What I experience
- Blinking pain. At worst it feels like tiny razor blades or stones are sewn into my eyelids. At best, just like something is between my eyelids and stopping them make proper contact with each other.
- Tacky’ sensation when eyelids separate
- A feeling of fullness and pressure in upper eyelids. Sometimes as though they are going to explode. I get this very strongly if I sleep without taping eyelids.
- Tenderness in some spots when touching eyelid during massage. As though the contents of the glands can’t be pushed through the gland openings. The location of the tender points / glands is pretty much symmetrical between both eyes and has been the same for a year. Upper lids only, mostly in nasal corners.
- Occasionally, the blocked glands can be expressed. I see semi solid meibum expressed. Translucent stringy, or mozzarella-like.
- Sometimes the expressed meibum is extremely painful, to the point where I have screamed and felt like I would pass out when it gets into my eye. My eye would also turn red when this happened. In the past, meibum expressed would have a brown / dirty appearance. I suspect release of this ‘toxic meibum’ sets off inflammation again.
- It feels like the blocked glands interfere with the entire blink. When they do occasionally open up, my whole eye feels hugely better. I’ve read about how the upper eyelid pulls moisture up from the lower lid and wonder if this action becomes broken by the blocked / swollen gland. It just seems like moisture spreads much better over the eye.
So I have a problem with trying to reconcile clinical signs with my symptoms, at least in this regard. It’s frustrating to be told that I have no problems with the glands, and to not really be listened to. I am sick of feeling alone in trying to diagnose my own problems and get the treatment I need.
But to my mind this indicates that I can now systematically produce good oils and my problems are localised to a few glands. The huge relief (ecstasy really) I occasionally feel when the blockage occasionally clears indicates to me that this is now about 80% of my problem.
I am booked for a gland expression with possible probing. I think this means only glands unable to express anything will be probed. I suspect something will come out of even my bad glands, so not sure how useful this will be. I’m also wondering if I need PRP or similar injected into the glands to stop them producing the ‘toxic’ meibum
I think I would actually feel significantly better if these glands were somehow just removed, if that is even possible. Obviously it would be better to have them unblocked and expressing good oil somehow but maybe this would work as a last resort?
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