Hello ,
I some how missed your post last night and again this morning when I logged on.

It's so sad you had to go through the resection to find out that something else possibly is the main problem...

Another member had a similar issues - she had surgery but one of the top TOS drs suggested she also had some unusual / unnamed autoimmune condition that causes swelling for her as well as TOS.
She has fewer headaches now since her surgery but pain & swelling are about the same.
An autoimmune dr is probably the way to proceed, I hope you can find a very good one in your area.
you might check out our Autoimmune forum for more info -
http://neurotalk.psychcentral.com/forum44.html

oh I was looking around for more Autoimmune info and this might be handy-
[Autoimmune Disease Checklist:
A Handy List of Symptoms That Can Point to Possible Autoimmune Conditions, to Bring to the Doctor ]
http://www.thyroid-info.com/articles...-checklist.htm


Did the dr feel the lump in the arm pit?
Is it still there?

If it is a lymph gland they usually can be massaged , stroked and warm heat to unclog it. It would be good to have a professional verify what it might be first.

Is the swelling problem in only one arm?
What other symptoms are you having along with swelling?