Hi all!  I’m new to this forum, but not to the world of masto :^)  First spots appeared 22 years ago (with about 4 years of worsening spots/symptoms till diagnosis of UP (clinical diagnosis of SM followed 3 years later).  Just like a lot of people with mast cell disease, I’ve had challenges finding (local (Phoenix)) docs that can (or want to) help.   I recently switched insurance plans that enable me to be seen at MD Anderson.  My first appointment is this week, and I’m doing a mad dash to update my core/basic knowledge of SM (which is severely lacking for the past several years).  I’m sure I’ll be put through a BMB awa lymph biopsy and blood tests to determine exactly where I fall in the masto spectrum.  My biggest question today is...have any of you had surgery to remove perpetually swollen lymph nodes?  Or, manual manipulation of lymph nodes to help drain?  I’ve had swollen nodes in an armpit for two years (two ultrasounds—no cancer.)  Unfortunately, they’ve progressed to the point of unrelenting ache/pain (not just annoying occasional ache).  The idea of any type of massage freaks me out (given a week-long flare from a massage 15 years ago…didn’t know it was a no-no in our world back then), but the idea of surgery to remove them is equally unappealing :^)   Like anyone with lymph involvement, I have pain at lymph locations on a regular basis and have learned to just ‘live with it’…but wonder if MLD (manual lymph drainage) might be an option at this point.
Any input would be sincerely appreciated :^)  Thank you!  Kimi