Hi Colin!

Can you tell me a bit about how your pseudo-tumor was related to CAH?

At a routine eye exam a few years ago, my optometrist noticed a good deal of swelling around my right optic nerve.  He sent me directly to a specialist and in less than 24 hours I was having a brain MRI.  I guess optic nerve swelling is indicative of serious trouble, but they found no brain tumor.  They then did a spinal tap expecting to find that I had pseudo-tumor, but my pressure was good and there was nothing to indicate problems in my spinal fluid.  I went through further tests with eye doctors and neurologists, and they ruled out everything scary.  They even did bloodwork for rheumatoid arthritis.

They decided I had benign papylidoma, meaning basically, that I naturally had swelling around my optic nerve and that it didn’t indicate I had a problem.  They scheduled me for a follow-up in a year, and if there was no change they were going to release me.

A year later, the swelling had gone down noticably, which made the doctor nervous.  He said that meant there WAS something causing it and they had missed it.  More tests.  Still no conclusive answers.  Meanwhile, through all this my LOCAH symptoms were getting worse and worse, and I finally had to relent and go on steroids (had always refused before, because it was more of a quality of life issue and I have a history of addiction -- I didn’t want to be on steroids and develop another addiction -- I was scared.  When I got sick this time it was no longer a quality of life issue - it was more serious.  My blood levels about ten times worse than what they’d been just a year previous, I was very sick, and my immune system was shot).  I was just starting on dex when the opthamologist noticed my swelling had gone down some, although I never made that connection when I’d seen him.

Well, when I went to him a year later -- after over a year on dex and feeling better than I’ve felt in my life -- my eye exam was NORMAL.  No swelling.  My vision field test was normal too - first time for that.  This time I asked him whether it could be related to the LOCAH, or my recovery related to the steroids, and he admitted he wasn’t familiar with CAH and felt my dex dose was too small to bring about such a profound change.  I pointed out that one of the sets of bloodwork he sent me for was all endocrine system stuff, and he just didn’t have any answers for me. 

I have an appointment with my endo in about a month and I’m going to talk to her, but when I asked on the board whether anyone had issues with papylidoma and CAH, I didn’t get any response.  I’d certainly like to hear the story of your problems with pseudo-tumor and CAH.  You can email me directly if you’d like.