truncal lymphedema?

WhatR- for most of us with lymphedema, "fullness" is the common presenting symptom.  If there are lumps or bumps, they can be other issues, or the symptoms of a longer term untreated lymphedema.  About the best thing to do is to get a consultation with a LANA certified LE therapist who can sit with you, see what you see, describe what she sees, do some measurements, and possibly do a very light massage technique to "move" fluids to a different lymph gland area in order to lighten the fullness.  For most of us, our doctors were the least helpful, and the OT/PT trained people have been the most helpful - they simply have more training.  LANA is the primary certifier, and if you can find someone nearby with this certification, you'll be a long ways down the road in getting good help.  Keep asking your questions, we're here to help.

can lymphedema present a year and a half after lumpectomy and rads?  My left breast is tender and swollen, I am being treated for infected seroma with antibiotics.  I have been on them for a week and there is a little improvement.  That breast has been asperated twice and that brought relief instantly.  Karen

I was afraid that was the answer, I have an appt. with my BS tomorrow.  I will  ask him about the possibility that it is lymphadema. I already found a PT that does MLD.  She is about an hour away from my home. Is it a series of visits or does she teach you how to do it?  Thanks Norma June.   Karen

Has anyone tried acupuncture for opening the lymph channels for truncal LE? My LE therapist is switching up her treatment plan for me, eliminating the compression bras during the day, slight compression at night with MLD and wants to add acupuncture. Just curious.. if Kira or Binney reads this, I'd love to know your thoughts on the subject.  

Probably the thing I find most helpful after the MLD is exercise and deep breathing.

Betsy, we're all so different, so it's hard to know what will work for who. In the Orient acupuncture has long been a sort of standard treatment for edema of any sort. There are two studies that I know of that are presently going on in the U.S. to determine how effective and safe it is (or isn't.) But at present there's no evidence either way.

I met a Chinese doctor, now in the States, who believes acupuncture can help relieve the swelling in LE and she's started one of those two studies. She doesn't think U.S.-trained acupuncturists are "safe," because she finds their training lacking and their practice lax, but I have no way of judging the validity of that belief. She was adamant that when done properly, and with the proper sterile precautions, it would not cause infection in a LE limb, but she was also quick to point out that no needles need ever be placed in the area with LE in order to treat it adequately. I'm very interested to see what the current studies show, but they won't be published for a while yet.

I think what might concern me more, personally, would be the suggestion of eliminating daytime chest compression. Maybe you'd want to try that for only an hour or two at a time and see what happens, extending the time gradually if you see it having no effect on the swelling.  There are many factors that can influence swelling, from the weather to activity types and levels, so while you're experimenting with the reduction of compression use, you'd want to keep a close eye on whatever triggers most influence your own swelling, and perhaps be more conservative about using compression during those times when swelling is most likely. We all love the idea of freedom from compression, but getting things back into control if they flare is no fun either, so slow and easy, and one experiment at a time, would be the way to go. JMHO!

Be well!
Binney

Binney,

I am back to wearing compression bras during the day. It only lasted three days before it was just too uncomfortable for me. I wish I would have read your post before I went cold turkey. Maybe easing into it might have worked better. Oh well...I still think I'm going to try the acupuncturist. My LE therapist gave me two names, one Chinese and the other a N.D., MSOM, LAc., R.D. She told me absolutely do NOT go to anyone my friends recommend. Both practitioners have experience with LE. Her perspective is it will help my stress levels besides opening the channels. Stress happens to be one of my triggers.

WhatRstatsanyway - Before I went to my LE therapist I spoke with my surgeon, who gave me the recommendation. I was also being seen for radiation induced fibrosis. I watched the video clip Kira posted but the technique is different for everyone. I do not have LE in my arm only my chest.  I would highly recommend going to a LE therapist, even if it's a 10 hour drive. It's well worth it. If you have someone that can come with you, that would even be better. They give you a lot of information to digest and sometimes having two sets of ears is better. If that doesn't work, bring a tape recorder so you can listen to what was said later. Good luck to you and know that you are not alone in this.

Well I went for my first acupuncture today. My dr. worked on my back only, as I have radiation induced fibrosis too. I see him again on Monday. He said maybe he would start dealing with my chest then, which happens to be swollen again. He said my back channels needed to be opened first.  I'm keeping my fingers crossed this will help. Meanwhile, I continue to wear compression bras during the day time and work out at the gym, do my MLD, and my deep breathing exercises. 

I am desperate for relief from the TLE.

Betsy