Chronic eye lid swelling as well

Dear Dr. Kutryb,
I recently read a posting from an individual about chronic eye-lid swelling. Unfortunately, I have the exact same problem. I have had swelling in my left upper and lower eyelid (and sometimes right) since I was 15 and now I am in my mid-30s. My attacks happen at night when I sleep and are unpredictable... sometimes 2 to 3 xs a week. I have SEVERE pain associated all day long on the days of my 'attacks' and consequently, HAs, swollen lymphs and achey (achy) joints in the hands, wrists fingers and elbows which also feel 'hot' and swolllen however my immune work-up is benign.  Sometimes the swelling is so severe I cannot see due to the inflammation and the sclera/cornea is swollen as well. Interestingly, I also developed MALT lymphoma in my eyes three years ago and get it treated via cryotherapy vs radiation. Any thoughts if the chronic swelling is related? Nobody knows what to do about the chronic swelling however I am concerned it caused the lymphoma and wondering about what else might occur. Any ideas or suggestions would be greatly appreciated. I am obviously under treatment at an eye institute however the eye swelling seems to be the last thing on people's minds yet I think everything has to be linked somehow.
Thank you

[Michael J Kutryb, MD]

First, if you had radiation and cryotherapy to the eyes then I'm not surprised that you still have chronic edema problems.  I suspect your problems are mostly related to lymphatic drainage of the eyelids and periorbital tissues.  It is a very mysterious problem to figure out and it may not be able to be treated in any effective way.  The swelling didn't cause the lymphoma, the swelling is often a result of the lymphoma or lymphatic drainage problems.  Sorry but your case is way beyond what I can help.  You may need to sleep with head elevated and  perhaps some type of facial massage, salt restriction - just throwing out ideas.  Perhaps you have  some sort of venous or lymphatic anomoly causing abnormal drainage on that side.  Making sure you don't have a recurrence of lymphoma is the main concern here.

MJK MD