orbital pseudotumor

HELP!!! My daughter has been diagonosed with orbital pseudotumor in 2006. She has been treated with steroids for the pass 5 years, gained 50+ lbs, and not feeling well about herself. The doctors are now running CTscan, MRI, blood work etc. and still can't slow the progression of the disease. Could you please recommend to me a nuero-ophthalmologist in the Houston/Dallas area who may specialized in this disease that could maybe take another direction in treating this disorder.

[Sandra M Brown, MD]

You don't want a neuro-ophthalmologist.  This is an inflammatory disorder.  Orbital pseudotumor is usually extremely sensitive to oral prednisone and the prednisone needs to be taken only in "pulses" and the weight gain is mostly water and can be lost between flares.  So it is unusual that your daughter has gained so much weight, unless she has been on the prednisone more than she has been off it.  That being said, definitely orbital pseudotumor can be treated with other antiinflamatory agents like azathioprine.  The ophthalmologist should be in communication with a rheumatologist to select the medication and monitor side effects. If I had recurrent pseudotumor, after the third closely-spaced episode I would definitely be wanting something other than prednisone.  I see no reason for a CT scan AND an MRI based on the information you provided, so you should find out exactly what was imaged and what they were looking for.  It does sound like the doctors are reconsidering the diagnosis.  However orbital pseudotumor is pretty "typical" and not hard to diagnose, usually.