Never give up, and try another specialist
Never give up, and try another specialist until you find someone who says "I know what you have and here is how to treat it!" While what is wrong with my eyes may not fit you or many, my story is universal - the story of not giving up.
My troubles started in 2011 with Lasik laser eye surgery. A year and a half later I had, moderate Meibomian Gland Disease, Evaporative Dry Eye & the pain had just begun.
By 2015 I'd done all the usual drops, ointments and had even given Autologous Serum Tears / drops a go. The pain was at its worst and life was looking like it was not worth living. In October 2015 my specialist at the time (#3) patted me on the back and said “Just keep hanging in there” – I took that to mean he was out of ideas. He had to go!
My doctor, ever the optimist said, “Some new medical breakthrough is always just around the corner, keep searching, something will turn up”
In December 2015, I visited specialist #4 and he uttered the quote I wanted to hear (above). By that time I had developed Corneal Hyperalgesia (nerve pain) and was having Corneal Erosions weekly on top of everything else. I recall specialist #4 saying - stop messing around with bullets and grenades, you need the nuclear option - Scleral lenses and Lacosamide.
It took me a long, long time to get Scleral lenses that fit, but even badly fitting ones took the pain away & my life returned to something pretty normal. At the time I was told it normally takes 2 – 4 lenses to get a good fit but it took me more.
In 2018 I got scanned for Free-Form Custom Scleral lenses. Essentially a 3D printed contact lens & the fit is perfect I can’t recommend them enough. (Info. From my specialist optometrist - They are designed on the sMap 3D topographer. The lenses are super high oxygen of 210 Dk and hydraPEG coated to make them super comfortable and wettable).
Now I just have to stand the pain for 30 minutes in the morning and 30 minutes at night i.e. when I am not wearing the lenses. I can cope with that much pain.
Update: May 2019
Photos and a video of Garry’s custom lenses: