Hi all!

Have any of you with CAH or LOCAH had a benign papylidoma (swelling around the optic nerve)?  Were you able to get any answers about whether it was related to CAH?  Here’s my story.

I have LOCAH which got much worse a couple of years back.  Around the same time, I found myself in the midst of a flurry of medical concern, as my eye doctor diagnosed me with papylidoma, which is swelling around the optic nerve.  This was limiting my vision, but worse, is a diagnostic red flag for brain tumors and a host of other serious medical problems.  I went through a lot of testing -- brain MRI’s, spinal tap, blood work, neurological work-ups and the like.  The doctors never found the cause of my papylidoma, but ruled out the entire list of scary things it could have been.  They were ready to change the diagnosis to pseudo-papylidoma, which basically means benign swelling around the optic nerve due to mutated eye structure.

Around this time I did see a doctor about my LOCAH and my bloodwork was horrible (I don’t have the exact numbers, but I do remember they had gone up by about 10x over my last testing.  My doctor immediately started me on dexamethasone, and within a few months I was getting the first normal bloodwork I’d had in my life.

And the swelling went down.  Which freaked out the eye doctors, because that meant something had to have been causing the papylidoma, and they wondered if they missed what it was.  While going through another one of my endless eye exams this week, I got to wondering about two things -- could LOCAH have been causing the swelling around my optic nerve, and therefore proper treatment of the LOCAH fixed the problem?  OR, could the small dose of the steroid simply have reduced the swelling itself?

I thought I’d pose the question to the board to see if anyone had a similar experience, before contacting my eye doctor again.  I may also call my endo.