chronic upper eyelid swelling

[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.

[Michael J Kutryb, MD]

I don't know what to say. You've had a major workup - far more than I could ever add here on this forum.  Generally if is just swelling that is not as worrisome.  If there is truly a mass there it should be obvious.  My best advice is to biopsy any mass that appears.  If just swelling - that is more elusive - perhaps just some type of lymphatic system abnormality on that side.  Keeps a watch for things like lymphoma in this area - but they usually cause a soft, balsa wood type mass that grows fairly rapidly and is very obvious.  Bad things usually get worse, grow, cause major problems.  One thing you have on your side is that in 3 years, nothing major has occured.  Good Luck.  Sorry - I just don't have much to offer here.  Unusual case.

MJK MD

[jbt1125]

Dr. Kutryb, if you were to pick a hospital to be evaluated for a "definitive" diagnosis/work-up for this type of case, where would it be? Hopkins Wilmer, Mayo, etc.?  I have pain with this upper eyelid swelling that I feel in my eyeball/orbit and sometimes headache.  I am convinced that there is more to this and want to feel that I have gone to see the best for evaluation.  We have plenty of money, but not peace of mind right now... family to care for, need to make sure there is nothing ominous going on.  Suggestions?  Thanks again!

[Michael J Kutryb, MD]

I'm not sure you need to travel across the country.  It sounds like the pain is your main problem.  Believe me, there are many, many people with facial pain type syndromes from cluster headaches to trigeminal neuralgia and others.  It is very important to rule out tumors, aneurysms, avm and other mass effects.  If no obvious physical deformity or abnormality can be found, then attention should be directed toward treating the pain with all possible modalities including drugs, physical stimulation therepy, accupuncture, nerve blocks, etc, etc.  The swelling could be something complicated or as simple as just sleeping on that side all the time or having more drooping of skin on that side.  Consider seeing a neuro-ophthalmologist in a teaching hospital in your state.  That would be a good start.  In the end it depends most on the actual doctor that sees you.  In your case, you need a nice, compassionate, listening doctor who understands your problem every bit as much as you need a very smart doctor.

MJK MD

[jbt1125]

Thank you.  I am currently seeing a Neuro-Opth at UT Southwestern Medical here in Dallas, a teaching hospital.  I believe that he is very smart, but he is not some of the other attributes you mention...i.e. bedside manner.  Perhaps I will continue down this path before going to an out of state center.

[futbolplayer]

I seem to have the exact same thing.  No doctor can seem to figure out what is wrong.  I am a 19 year old very healthy male college student.  My troubles have been going on for 6 months.  I have a terrible pain in my eyelids when I try to look up or around and have some foreing body sensation.  The doctor cannot figure out why my eyelids chronically swollen.  please pm me so we can talk