Truncal Lymphedema

lene17

I had 5 nodes (all negative) removed in 9/08, went for PT to a Lymphedema therapist and was told I did not have it...but to wear a sleeve if I flew.  Well, I flew to London in April and have now noticed I have folds (I thought I had gained weight strangely) in my back torso on one side.  I also have a small area of edema between my reconstructed (trams) breasts - which I am constantly rubbing as it is so annoying.  I went back to the PT and was told I now have slight lymphedema and will be going to her for therapy.  Has anyone developed edema BETWEEN their breasts?  Also, I'm told to wear a cami which gives some compression but then articles say to wear loose clothing.  Which is it??  My PS told me to go back to wearing the high-waisted support panties.  

rockysmom

It's great that you will be having therapy!

I have trunkal lymphedema. I am able to do a decent job of controling it myself finally since having been taught mld by my therapist.

I wear a compression bra (Belise) if I am doing anything at all strenuous. I wear it to work every day (factory), and for yard work and such. I haven't really noticed any problemd BETWEEN my breasts, my effected breast, however, gets hard and fluid filled. My worst areas are my upper back and around the side uneder the arm.

For the high waisted panties- I am a bit surprised they told you to wear them. I was told specifically to NOT wear anything constricting at my waist- no tight jeans, etc.  Check with your therapist about that.

Seems you've at least caught it in a timely enough manner to be able to get relief through therapy.

Best wishes

kira66715

lene17,

Jane is out of the country, but she developed hard fibrous edema in the cleavage area after her TRAM, and she found that swell spots, under her compression bra/cami worked very well. Perhaps Binney can describe it better.

You can buy them from the company, or bandagesplus

http://solarismed.com/store/cart.php?m=product_list&c=4

Here's Jane's story:

http://www.stepup-speakout.org/Story%203.htm

Hope this helps.

You don't want to restrict the watersheds at the quadrants, but you do need to compress, and with a trunk, that takes a creative approach.

Kira 

Binney4

Hi, lene,

I'm with rockysmom and Kira on avoiding the high-waisted support panties -- you want the fluid to be able to move "south," and a high waistband can make that difficult. Some gentle compression on the swollen areas will help prevent further swelling until you can begin therapy. Here's a page of information on truncal lymphedema, with some suggestions on the bottom for possible compression options:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Keep us posted. Very gentle hugs,
Binney

lene17

Thank you all for your suggestions!  I'm on my way to the PT today - with lots of questions.  BTW - the high-waisted support panties were because I had a tramsflap 8 months ago.  I am scheduled for surgery on the 26th to remove 3 areas of hard necrotic tissue.  Now, after reading postings here, I am questioning my decision.  That's something else I will discuss with the PT today! 

ckslow4

Iene,

I had bilateral TRAM and have breast and truncal lymphedema well as bilateral arm lymphedema.  I went searching the internet and found contourMD that has compression garments for post plastic surgery procedures.  The garment I ordered that helps me get through the day is one that has compression for arms, trunk, & abdomen. It zips in the front and goes down to my thighs.  It costs about $129.00 and I forget the name of it.  It comes in beige and black.  I have 3 in beige and 2 in black.  It required a letter of medical neccessity from my surgeon for my health care account to cover the expense.  I wear my sleeves underneath, and my gauntlets on my hands.  I feel like a trussed up goose but it helps.  The web site is www.contourMD.com.  I hope this helps.  It's expensive I know...I work full time and couldn't find anything to help or anyone around here to advise me.  This garment along with the soft spots also compress my armpits where I was getting a lot of swelling.  This keeps them in place.  Good luck.  Gentle hugs,

lene17

Thanks so much for the responses.  The PT showed me the Bellisse bra but said she didn't think I needed it yet.  She did suggest I wear the sleeve when exercising or flying.  I bought shaping camisoles (larger than I would ordinarily wear) which gently compress plus I bought ugly but comfortable Playtex bras - which have wide comfortable straps and sides.  She feels with the manual drainage massage and me massaging at home that I should be able to keep it under control for now.   She also suggested a soft sleep bra.  I have a sheet of exercises to do at home.  Hopefully, I won't get any worse after next week's surgery!  I appreciate you all taking the time to write back.

OneBadBoob

Hi Lene--

I too had LE in the cleavage area of my TRAM breast.  Be extremely careful with the Belisse bra, and do not wear it without a swell spot or foam padding in the cleavage area, since the Belisse bra "pushes" the breasts together and leaves an open "air" space for fluids to collect in that area.  The first time I wore a Belisse bra without a swell spot or padding in the cleavage area on a transatlantic flights is when I developed fibrosis in that area as well as increased swelling--and the LE fibrosis is quite painful, so you want to avoid that at all costs.

Of course, the LE therapist I was seeing at the time told me the swell spot was totally unnecessary--well, she is long gone from my life!

Have you been massaging your areas of fat necrosis?

I too had fat necrosis in my TRAM breast and found that the swell spots and chipped foam are an absolute miracle for softening fat necrosis as well as LE fibrosis.

I wore a breast binder with a full breast swell spot for sleeping every night, and was delighted that not only did that plus the LE therapy soften the LE fibrotic spots, but it actually softened all of the fat necrosis as well.   

Now that all is under control, I always wear a compression cami with a little "butterfly" swell spot between my breasts.

Let me know if there is any other information I can help with.