Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> New to forum...have question regarding lymph nodes http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1393344500 Message started by k2of5ks on 02/25/14 at 04:08:20

Title: New to forum...have question regarding lymph nodes
Post by k2of5ks on 02/25/14 at 04:08:20

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

Title: Re: New to forum...have question regarding lymph nodes
Post by Starflower on 03/02/14 at 01:36:27

Persistent swelling in my lymph nodes was one of my first signals that something was really wrong. I had one in my neck that was around 3cm by the time I had it removed. The biopsy said it was benign, but the ENT wanted to be sure. Me too. I have another (smaller) lump on the other side of my neck, but it hasn't really grown since I was able to get my mast cell symptoms under control. I remember reading somewhere that chronic swelling can cause scar tissue to form. It's not dangerous, but like you observed it's also not very comfortable! When I flare the nodes in my neck and armpits swell dramatically for a few days.

Incidentally... although it's possible to stain a lymph node biopsy for mast cells, pathologists won't think to do it unless you ask. A bone marrow biopsy is the gold standard for diagnosing SM, but I wouldn't do it unless your tryptase is really high (in the 100s) or you have some other accompanying blood disorder that would be helpful to diagnose and/or monitor. Treatment for mast cell disorders is based on symptoms, not tests. Most doctors are not accustomed to working that way, but for people like us it's vital!

You're smart to educate yourself 8-) Welcome to the group.

Heather