Chronic swollen unilateral upper eye lid

[jbt1125]

For almost 3 yrs now, I have had a swollen upper left eyelid.  It occasionally is accompanied by dull deep pain in my eye and sinus/septum also.  For the last 2 yrs I have seen a variety of opthamologists, neuro-opthamologists, etc.  Recent (less than 1 yr) MRI of orbit and brain was normal.  Clinical exams have all been normal.  However, every MD does acknowledge that there is swelling there, they just dont know why.  Even had a lacrimal gland biopsy, which showed inflammation, but nothing cancerous.  

I am so frustrated, I dont know what to do.  There is obviously SOMETHING wrong, but they dont know what so far.  Is there an advanced/specialized hospital in the U.S. with eminence for eyelid disorders? What do you think that this could be from what I have described? I am very worried it is going to end up being something fatal that has not been detected properly.

[John C Hagan III, MD, FACS, FAAO]

Suggest Chuck1000 see a neuroophthalmologist. Find one near you at www.aao.org

JCH MD

[Chuck1000]

I have had this for a year and half, only in the right eye. Opthamologist said maybe allergies. Allergist said thyroid. no doubt tests have shown my thyroid is out of whack, and I do have most of those symptoms, but this swelling is like clockwork once a week, right eye. And I have sixth nerve palsy right side, but they say no connection. I am very frustrated.

[John C Hagan III, MD, FACS, FAAO]

There are many world class tertiary care centers in the United States and eyelide problems just falls into a group that they see much of.  Given your work up its likely that its not "fatal" and watching for change is certainly one option.

In the USA outstanding eye care cetners: John Hopkins Wilmer Institute, U of Miami Bascom Palmer, New York Eye and Ear,  Mass Eye and Ear, Mayo Clinic, Emory univeristy, Iowa University, Washington University, UCLA, USC, and many more.

JCH III MD