So, having completed the procedure to address the Floppy Eyelid and Giant Fornix Syndromes that I had been diagnosed with, I was to now continue the recovery process by applying a commercial eye ointment into the eye, and wait for the bruising to heal and the swelling to subside.
And the bruising did subside within a short and quite reasonable time.
Not so the swelling, unfortunately. That persisted over time and through several visits with my eye surgeon, who suggested that over a few months it should subside. That did not occur.
A few weeks post surgery we returned to the eye drops, and continued regular follow-up visits with the surgeon, but there seemed to be no reduction in the swelling. I should note that there was swelling on both sections of the upper eyelid, as well as on the lower part of the eyelid protruding into the upper cheek area.
This swelling was affecting my vision as well. Not really significantly, but, for instance, when driving in bright sunlight, I was seeing a reflection of the sun from the lower part of the eyelid, and I found that quite distracting.
By August – some three months after the surgery – we decided to seek a second opinion and arranged an appointment with a second surgeon. This is where the fun began.
He took a look at me and asked me what the hell had happened, and so I gave him the full opera, in three part harmony and .. sorry, wrong story.
He proceeded to take some skin samples for biopsy, one from the upper eyelid, and a second from the lower. These were duly sent away for analysis, and a possible diagnosis of Erdheim-Chester Disease was returned.
Note that this was a “possible diagnosis”. The lab wasn’t sure, but there were lots of histiocytes, which is one of the primary indicators of ECD. Googling ECD was a relevation, and my presentation was atypical. I had no leg pains, for instance, and the medical advise was that if this was ECD, then it’s possible that it’s localised, and hopefully that’s how it will stay.
But as I said, that’s where the fun really began. Because of the rarity of ECD, diagnosis is very difficult, and there’s a lot of differential diagnosis that needed to occur, so that we could hopefully eliminate (or perhaps identify) other potential villains in this story.
So we now begin the pin cushion mode of this story. Blood tests. Lots of blood tests. CT Scan. Bone scan. MRI. Full body scan.
Life is good.