Truncal Lymphedema

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happyhere
happyhere Member Posts: 15
edited June 2014 in Lymphedema

Has anyone found that compression garmets help them with truncal lymphedema?  And is there anything recommendation for something that is not custom made?

The main area affected is the upper half of my left arm, arm pit area, left chest area through to my back and shoulder.  I have almost no swelling issues from my mid-upper arm down to my fingers.

I wear my sleeve, but where the sleeve ends on my upper arm is the area with the swelling occurs.  So the end of the sleeve gets tight by late afternoon.  I tried one of the slimming camis but my arm pit/area between breast and arm has swelling.  The arm hole of the cami irritates this area.

The only suggestion from my compression garmet fitter is to try the cami or the next option is something custom made.  Before I go the custom route, wanted to see if anyone had tried anything else.

Thanks!

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2012

    Hi happyhere,

    The main Breastcancer.org site has a page on Compression Sleeves and Garments, which suggests a special bra or vest for truncal lymphedema. Also, at the bottom of the page, there are links to resources where you can shop online to see if any of those garments might work for you!

    Hope this helps!

    --The Mods

  • Katiejane
    Katiejane Member Posts: 789
    edited July 2012

        Happyhere,     I have the same problem around the armpit on into my side/back.  I did try a Tribute vest a few years ago for well over a year and the only things it did for me was to make me sweat at night and it really hurt the area back behing my pit around to my back.  It felt worse when I wore it in alot of ways.  And this was a custom made vest!  Some gals they work well for but I was not one of them!!!! I hope you find what works for you and please share it with the rest of us!

    Katiejane 

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited July 2012



    Happy -

    I have same problem area (in & all around arm pit:  pec muscle area front, down side, around back of shoulder across to center back & down to waist.)  The few articles & websites that address truncal LE -including this one (moderators above) & SUSO - refer to garments that obviously won't work for this area.  Anything sleevesless is problematic bcse arm opening doesn't provide adequate coverage (at best) or cuts into edematous tissue. Garments w sleeves are problematic for arm LE. I have not found any that work for me.



    Many people on this site recommend surfer rash guard tops or UnderArmor sports shirts. You might them. They don't work for me (I don't like the fit or the fabric & "compression" is too light for me.)  



    I rely on a homemade shirt that is better than anything else - but it's not good enough.



    I also have a custom Tribute vest.  It helps somewhat w pain (not w swelling) when trunk feels especially bad -  though it is hot & uncomfortable in its own way.  I have some ideas for a better fit & am looking for a creative fitter or therapist willing to help w design & order.  



    I am now considering Flexitouch machine as last resort.  Out of pocket per my insurance.  Don't know if it will work but feel like I'm at the end of the line w other options. ?!



    Would love to hear from anyone w a solution.



  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited July 2012

    Happy-   I forgot to address swelling at very top of arm  -area over top of sleeve & space btw arm sleeve & vest / cami. 



    No great solution. 



    Sometimes I tuck a swell spot in my armpit and wrap something somewhat stretchy around top of arm and armpit.  Not at all tight - just enough to hold swell spot so it squishes into armpit for a while.   Jovipak makes a swell spot that is supposed to tuck into a cami or sports bra (or Bellice  bra in particular) with a little axilla "puff" attached.  I don't use that one - but it might help to sort of pad the arm opening of your slimming cami.  ?

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited July 2012

    I have truncal LE as well. However, due to my severe post mastectomy pain syndrome, wearing anything like that around  my chest sounds like it might not be an option for me.

  • Ericamary
    Ericamary Member Posts: 44
    edited July 2012

    I just started today with truncal LE. It is very painful, under the arm on the trunk. It feels like sunburn type pain and is swollen and filled with mild fluid. IS there anything i can do besides wear a garment? It feels heavy, hot and painful. Thanks for your help.

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Ericamary, "hot and painful" is a heads-up for possible cellulitis. So is the fact that the swelling came on suddenly. Sent you a PM. Please don't wait until Monday to check this out. Right away is best!
    Be well!
    Binney

  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2012

    Very interesting thread....Just lurking and reading.

  • happyhere
    happyhere Member Posts: 15
    edited July 2012

    Thanks for everyone's feedback.  I may try the swimmers shirt.  I am also looking at the kind runners use.  The other option I am going to try is taping.

    I've been sewing children's clothing for 11 years and I cannot come up with a good solution that could be custom made. So that is my hesitation on going down this road of having a garment made.  It's a tough area to get compression and movement without a binding seam.  It's the area at the 10 o'clock position (on left arm) from the armpit that swells and gets painful from the sleeve and cami.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2012

    I tried the kiesio tape...it never stayed on more the a few hrs.you gotta stay like a dummy and do nothing.The I was told to try Milk of Magnesia before the taping...that didnt work either.A roll of that tape is about 100 bucks.

  • Jolly
    Jolly Member Posts: 6
    edited July 2012

    I also have edema in a hard to reach spot: in front of my pec and in my underarm area. Vests and camis made for compression hardly cover the area. The best solution I have found is the Reebok Easytone shirt. The cap sleeve is just long enough to reach my compression sleeve for continuous coverage. It is extremely tight (I remember thinking "sausage casing" when I struggled to put it on the first time). But after a few tries it is easy and it feels so good. I mostly wear it when hiking and always when flying. I should mention that I had BMX without reconstruction and I do not wear prostheses, so there are no breasts, real or not, to accommodate. This shirt would definitely flatten them! But it is sold as a workout shirt, so I guess some people with breasts like it too.



    It is harder and harder to find so I wonder if they are no longer making them. If you like this shirt or would like one and can't find it, contact Reebok! I am because I would be lost without mine and I know they won't last forever!



    I do see Dick's has a new exclusive "high compression" Reebok shirt that I am going to try. I will size down for good measure. They have free "back to school" shipping right now.



    Good luck! I am delighted to learn from others' experiences with truncal edema and look forward to reading about more solutions.

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Jolly, welcome! And thanks for the tips. I looked for a cap sleeve at the Reebok site but didn't see one. Do they have any with a higher neckline for those of us with swelling more toward the middle of the chest?

    For my axilla and right-in-front-of axilla swelling I use a Solaris Kimbe Swell Spot, which stays in place well under my WearEase camis. Today it's really bad, though, so I've resorted to a Jovi bilat post-MX pad:
    http://www.jovipak.com/breast.html
    They don't stay in place so well, so I only use them when I'm going to be home so I can adjust them as often as needed.

    Sorry about the stupid truncal LE, Jolly, but really glad you joined us!Smile
    Binney

  • Jolly
    Jolly Member Posts: 6
    edited August 2012

    The only places I can find the Reebok Easytone shirt now is Amazon and EBay. I am terrified they are discontinued so I have amassed quite a collection. They are far more compressive than the Under Armor garments I have tried. FYI, if you find one and are wondering about sizing, for reference I am relatively small (5'3", 115 lbs) and without breasts and the small is very tight on me.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    Jolly-If im a 35DD what size should i buy...im 5ft.121lbs.with these  kantalopes.I would like to try it.I have Truncal LE.mild.and I do exercise everyday.

  • Jolly
    Jolly Member Posts: 6
    edited August 2012

    I would guess a medium. It will be hard to put on and take off the first few times. If I were not sure I would by both medium and large and return one. They do loosen up slightly over time. You might read some of the customer reviews to get an idea of how they fit over breasts. Keep in mind these people are looking for compression to increase fitness, not to treat a medical condition.



    I wash mine in a net bag in Ivory Snow and hang to dry, which extends the life of the compression a bit. Btw, when I exercise heavily (such as go on a difficult hike) I sometimes feel winded and wish my lungs had more room, but the Belisse vest I have is much worse and doesn't protect the area that swells.



    I just ordered two other styles from Dick's that are also Reebok that they say are exclusive to them. I'll let you know how they compare.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    Jolly---I am in no hurry.I am starting Pt #3 Aug 16th.I wanna see what she says....this is getting impossible.Im doin my homework as i spent a fortune when i was told edema(not)then i spent more $$$$$havin extras and comfortable sports bras(no good either) but i feel i might need the compression at night.I sleep now in my compression bra(not)and the sports bra on and off.Been doin it for over 1 yr.only had 2x pain.do exercises every day...

    just wondering about the vest.Thanks for the info.hugggs K

  • Ericamary
    Ericamary Member Posts: 44
    edited August 2012

    Hi, i am having a similar problem as you. IF you find something that works please message me and let me know. I wish you the best and hope you find something that works. I am going to try the underarmour shirts but i can't wear those in 90 degree weather, will try in the winter.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    When I called the PT to see if they are gonna measure me they told me to go to Nordstroms.So I called them...yes they will measure me and yes they will tell me what I need.just gotta get there.

    I know the Belisse is not only quite expensive but it doesnt work for everyone and you need 2 people to put the damn thing on....

    I am still wearing the bra i thought was a compression bra to sleep and the sports bra during the day.

    If somehow i score on something i will keep everyone posted....

    LE suks.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I too have truncal along with it under my breast and on my side. I was having the hardest time doing my manual massage becasue of where the swelling is. I would have DH do it when he was here, or use a bath towel across my back to try and get the same effect. Finally my LE therapist reccommended a pump.. I had a free home consult (1 hr using the pump unit) All I can say is wow!! Insurance approved it, the company waived my copay (700 bucks) and it's on its way here! I would highly reccommend ya'll look into something like this to help. After trying various garments, the heat, I was fed up with the pain and swelling. I will say, I found a compression bra (long line) that is made from the same type of fabric as my sleeves on amazon. I am waiting for it to arrive. I want comfort that does not make me look like I have a flak jacket on.

  • Jolly
    Jolly Member Posts: 6
    edited August 2012

    I just wanted to follow up on my previous post about the "high compression" shirts I ordered from Dick's.  They just arrived.  They have slight compression, but not even close to the Reebok Easytone shirts.  I ordered XS (5'3", 115 lbs, no breasts) and they do not compress me.  I will probably return them.  If you are a larger person and could order a size down you might experience some slight compression that could be helpful for sleeping, cool days and those times when you aren't experiencing a major flare up.  

    I should add that I do not rely on compression, but try to use it as a follow up to regular exercise and self- or PT massage for drainage.  Swimming has saved me.  I had to start VERY slowly and build up:  10 laps a day for a month or two; added 2 laps every 2 weeks or so; started over if I had a period away from a pool.  I now swim a half mile a day -- just takes 20 minutes!   The combination of compression created by the water pressure, controlled deep breathing,  non weight-bearing repetitive exercise of the chest, back and arms and cool temperature...not to mention the meditative and fitness effects (!) has been wonderful.  In some respects my new level of fitness  is the "silver lining" to this burdensome affliction.  The swimming has also prepared me to hike with poles, kayak, work in the garden, etc. (all with the shirt, sleeve and gauntlet).   My worst flare ups now come when I don't swim, so I never go anywhere without my swim suit and I seek out a pool in every place I travel to.  If it is a tiny hotel pool I still use it to exercise my arms through the water.  BTW, I never exercise without following it up with self massage.  I also self massage first thing in the morning and last thing at night.  

    Hope some of this is helpful! 

  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    Jolly, come over to the LE exercise thread! We could use some of those ideas and all that enthusiasm for added inspiration!

  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    Granny, if you need taxi to Nordstroms, yell for my funny little prius~~we go there!

  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    proudtospin---thank you soo much for the offer....Its so wonderful havin a sista in the next town with a heart as big as that town.I appreciate it.Im goin away this weekend and I dont really want to buy anything till I see the PT for the first time on the 22 of this month.

    Im doin the exercises every day sometimes 2 and 3x a day and I cannot go swimming unless its a warm pool.The cold water kills my sciatica.

    And I do have it under my arm too.

    LE suks.big time

  • KS1
    KS1 Member Posts: 632
    edited August 2012

    Jolly - I went to one of the large Dick's sporting goods store. I also found that all of the compression shirts they carried (underarmour, nike & reebok) were downright, and they all seemed to be pretty lightweight compression. I know I am small, but I am not *that* small.  The Reebok XS was the least baggy.  Wearing two at the same time over a Jovipak axilla pad, I get a modest amount of compression and my side feels better.  I've got a long plane trip in a couple of days, and am not sure whether it will be enough for the flight. What do  you think about me wearing a short sleeve sweater underneath the two compression shirts to make them tighter?  KS1

  • Jolly
    Jolly Member Posts: 6
    edited August 2012

    KS1, you might get more compression that way!  I haven't tried it, though.  Sounds like you think it might work.  Let me know what you experience.  I have never seen the Reebok Easytone compression shirt in a store, just online.  In my opinion, they are in a class by themselves!  If you go to Amazon maybe you can get one in time.  Another option I have tried:  compression shirts made for boys.  I got one at Target a while ago and it was OK.  I don't know how they would accommodate breasts, however.    Best of luck to you!  BTW, I travel a lot and try to move regularly on the plane -- I get up and walk, do stretches, lunges and squats, gently pump my arms occasionally over my head, etc.  

    Carol57, can you send me a link to the LE exercise thread? I went to the LE section and notice there are hundreds of threads!  I'm relatively new to this and still haven't found my way around very well.  Thanks.   

  • carol57
    carol57 Member Posts: 3,567
    edited August 2012

    Hi Jolly, here's the link:

     http://community.breastcancer.org/forum/64/topic/783789?page=42#idx_1248 

    I'll be looking for your posts there! 

  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    KS, if you're wearing the sweater under the compression shirts, then you have to worry about where the sweater seams are and how they're made. Two compression shirts pressing seams into your skin in the wrong place could be a problem. How about a breast binder over the two shirts instead?
    http://www.breastbinders.com/Store/catalog/Traditional_Breast_Binders-1-1.html

    Truncal LE--phooey!Yell
    Binney

  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2012

    I put everything that all the sistas post in my favorites... every garment, so im ready to rock and roll.just waitin till the eval.

    LE suks..big time.

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