Truncal Lymphedema

Do any of you ladies suffer from truncal lymphedema?  It frequently occurs after reconstruction or lung surgery.  Symptoms can range from very minor swelling or discomfort to severe pain and swelling that may encompass up to the entire chest, back and shoulders. 

I have a bit of truncal lymphedema in my right underarm.  Thankfully, it is very mild.  For about a year after my reconstruction I felt like my underarm was bulgy and very uncommfortable.  When I took off my bra at the end of the day I felt like I was still wearing it all evening.  Yet when my oncologist compared my underarms she said she couldn’t see any swelling.  Huh.  That just means that even the most minute edema is painful and uncomfortable.

Unfortunately, my mom has not been so lucky.  She is suffering from fairly severe truncal lymphedema.  At first it was just the underarms like mine.  Over the last year or more, however, it has spread across her unreconstructed chest wall, around her ribcage and is beginning to spread across her back.  According to her, it’s so bad as to look like her old breasts have relocated to her sides under her arms.  GreatThis is what truncal lymphedema looks like.

She routinely does self massage and physical therapy with a lymphedema masseuse.  She has to or she looks like she never had her mastectomy.  The trouble she’s recently been having is that the lymph build up across her chest has stretched her skin much like expanders do prior to receiving breast implants.  Again, yeah!

My mom recently (this morning) consulted with a plastic surgeon about removing all the extra skin.  Her appointment was something less than satisfactory. 

She was told that while he could remove the skin the swelling may just return and stretch it out all over again.  Ok.  We both kind of figured that.  But the surgeon also told her that it was not lymphedema.  What is it, then?  Excess fat. 

Yes.  You heard me right.  Excess. Fat.

Forget that two oncologists, a general practitioner and a lymphedema physical therapist all agree it is truncal lymphedema.  Disregard obvious and predictable positive response to manual lymph drainage.  Discount completely the possibility that a patient who has undergone chemotherapy, surgery and radiation just might know her body a bit more than a plastic surgeon who is looking at it for the very first time; call it instead, excess fat

Needless to say, my mother will not be seeing that plastic surgeon again. 

I found that once I stopped wearing a bra entirely my underarm issues went away.  But it took a while.  I had actually forgotten I had had the problem until a few weeks ago when I attended an all-day photography lecture.  I wore a tight elastic cami under a peasant blouse.  It had a built in shelf bra.  By noon I found myself pulling uncomfortably on the underarm of my peasant blouse.  At the mid-afternoon break my right fingers were puffy and the cami was cutting into my underarm like a tourniquet.  I rushed to my car at the conclusion of the lecture and squirmed out of the cami immediately.  It took nearly 4 days before my underarm felt normal again. 

I had to shield my eyes from the blinding glare of the lightbulb over my head. 

I know that the most common treatment of lympedema is compression.  Compression sleeves, compression camisoles, etc.  I can’t help but wonder, though, if wearing nothing in conjunction with the lymphatic massage might be a better solution for my mother. 

I don’t mean to put this out there as a tried-and-true solution by any means.  I am hoping to access the great knowledge of the internet.  Please let me know what your experience has been.  What has worked for you.  Do you do massage?  How does it work for you? 

For those looking into Manual Lymphatic Drainage Massage there is a video on YouTube. 

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5 Responses to Truncal Lymphedema

  1. whymommy says:

    I love MLD. For me, I have to do daily MLD, periodic MLD with a therapist, daily compression sleeves and gloves, and a special nighttime compression sleeve each night. The nighttime one is key — I wear one that actually drains my arm overnight, and I feel better in the morning.

    Since I have truncal lymphedema too, my physical therapist taught me to do a complete set of MLD, neck to chest to belly to lingual line, back up the side to the underarms, then down the arm to the fingertips. And then back. It takes a lot of time, but it totally helps.

    Good luck to your mom!

  2. jan says:

    I’m the mother that imstell was talking about.
    One of the questions I’ve had about my edema starts way back ,shortly after my tubes were removed.I had to have the tubes an extra week because of the amount of fluid my body produced.I went to the Dr.after 1 week and she had to use a syringe to remove the extra fluid.We did this for several weeks,until she wasn’t able to remove any more fluid.She sent me to physical therapy where I learned to do massage.It seems to work very well for awhile.after several months I had to return to therapy for more intensive massage.Again it opened up my lymphatic system.I’m starting therapy again and hoping it lasts longer this time.
    My question is:Could the fluid being removed by syringe have anything to do with the excess fluid?
    Any comments or ideas might help.
    Thanks for letting me vent.
    Jan

  3. Laurie says:

    I have truncal lymphedema. It started immediately after surgery. When I asked what it was, my surgeon said, “back fat”! – this kind of thing drives my physio (I think you guys call them PTs wild.
    I only treat mine sporadically but I do find it makes an enormous difference when I don’t just stick my head in the sand. Lately I am finding it hard to sleep on my right side so time to seek help.

  4. Spruce Hill says:

    Thanks for this post Stella! I am having problems with my left arm right now and have therapy scheduled for the 30th. I have not really been instructed in message yet and this really helps! I have a bit in mt back area as well. Very painful stuff!

  5. […] it for some months now and did not realize it. I am suffering from mostly truncal lymphedema. Like Stella my symptoms are mostly pain with a bit of swelling. I have made lots of trips to my oncologist […]

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