My LE Therapist's thoughts on the World Lymphology Conf.

glennie19

Hi all,, I'm going to attempt to summarize what my LE therapist told me today about the conference.

There was a big debate about MLD. Should MLD be taught for prevention or only as a treatment? There was a retrospective study showing that for prevention, it was not worth the time, (I'll have to look and see if I can find a PubMed article on this)

Also, there was discussion about our quadrants. According to what I'd learned: we have 4 quadrants, across the waist and down the middle of the body are the dividing lines to give us 4 quadrants. "Experts" says that doing MLD down the body, across the waist quadrant did nothing to move the lymph down there. Across the body,,,, from left to right,,or the reverse,, yes,,,, but not moving lymph from chest area to below the waist. Below the waist is part of my MLD routine, so that is a change!!

Reverse node tracking: So when you go in for your Mastectomy, you get the dye put into your nipple and it moves down to your sentinel node. Well, they can also put dye in your hand/wrist and it reverse tracks up the arm. This tells them when nodes are primary nodes for draining the arm or draining the truncal area. Apparently there are primary and secondary nodes for each area,,, if the primary nodes are removed, the theory is that those people are more likely to develop LE. If the secondary nodes are removed, less likely. Now the surgeon on the panel said, that he would just be taking the nodes that light up from the breast end of business, as he is more concerned with any positive nodes. But I feel this is really important. I already have LE on my left side. If I needed to have another MX on the right side,,, to reduce the risk of developing LE on that side too,,,, could the dye be tracked from both ends and they figure how which nodes that were be better to keep as they are primary? Don't know,, but found it interesting. For me: in addition to removing my sentinel node,,, my BS took 5 more nodes, because "they were in close proximity". You have to wonder,, if he had only taken the sentinel,, would I have ended up with LE?

There was a lot of discussion about surgical procedures which we didn't really talk about as I'm not doing that. UF Shands (where I go for therapy) does do the surgery, so my therapist sees those patients so it was of a lot of interest to her.

Wish I had more details, or links. I will look for articles on these topics and if I find any, I'll post in this thread.

glennie

glennie19

http://www.ncbi.nlm.nih.gov/pubmed/25704555 One abstract about axillary reverse mapping

glennie19

http://www.ncbi.nlm.nih.gov/pubmed/23975287

glennie19

And this study from 2012 shows that MLD could be helpful for prevention. OMG,, it's all so confusing.

http://www.ncbi.nlm.nih.gov/pubmed/23342930

carol57

glennie, that's a great summary, and thank you for the links. I did not go to the session where they had that particular discussion, but MLD was discussed in a few other sessions I attended. The scientists are in two camps, it seems to me. I thought those with clinical backgrounds, i.e. healthcare providers, seemed to acknowledge MLD benefits beyond just moving fluid, such as working on fibrotic tissue. Other scientists with long LE research credentials, but not clinicians, seemed to look at it just as a fluid-movement technique that can be replicated by compression. Sadly, I heard one person say in a private conversation that public and private insurance resources should not be spent just because patients want an hour-long 'massage' that relaxes them and makes them feel good. I don't think that person would ever have made such a remark in the large conference forum, but she said that to me when I was questioning interpretation of a study whose researcher interpreted to mean that compression works just as well as MLD to achieve volume reduction, so MLD is not needed.

I am so heartened to hear that the session I missed had a more positive tone about MLD.

Nordy

Hmmmm.... Well, those of us in the "know"... you know, who have experienced lymphedema first hand, and also those of us with a certification in MLD and lymphedema treatment happen to know that MLD works. Quite honestly, my arm is so finicky that sometimes I can't wrap, or I wrap and have to pull it off a couple hours later. When I have MLD, I can feel the heaviness move from my arm to my upper back (where it likes to go) until the therapist moves it across to the contralateral axilla (opposite armpit). So... we all know it works and I wish I were there to take a stand for MLD!

lisa-e

Thank you the summary.

glennie19

Nordy: according to my therapist, the debate was about whether MLD worked for prevention of LE. Using it for treatment,,, everyone seems to agree on. But one of the links above shows that MLD has worked for prevention too. Go figure. It would have been nice to have some real-live patients that to do a rebuttal!

carol57

Nordy, the compression-works-as-well-as MLD presentation generated quite a response, with two therapists arguing strongly and articulately along the lines you mention. Dr. Mei Fu, a well regarded LE researcher (and a nurse) also argued in favor of considering MLD to have broader benefits than what just compression can offer. Gunter Klose, who owns a CLT training school, also spoke up and reminded everyone that using studies to suggest MLD isn't needed is not at all productive in the continuing fight to get LE therapy reimbursed in the US, and that one study does not prove anything. Of course, he has a vested interest in MLD remaining a best-practices therapy. Even so, the research presenters got an earful. Too bad I'm not credentialed, and my gentle push back in that private conversation didn't resonate, I'm pretty sure.

carol57

Glennie, there were several MLD debates. The session your therapist attended did indeed address MLD as prevention, but there was another one as I described above. There were many concurrent sessions, so we were obligated to pick and choose. The presenting reseacher for the study I described was Karin Johansson, and her topic title was 'MLD: Do We Need it?'

carol57

More on that presentation, which was about a ten-year observation of patients and treatments in the presenter's Swedish cancer center. Karin Johansson is the presenter, and I believe her background is in physiotherapy. So it was not a true study, but a look-back review of treatments and patient outcomes. Here's part of the summary provided to conference attendees, describing her center's protocol and the results:

Compression garments are ordered if a LE is diagnosed. If needed, a
shorter period of bandaging for reduction of LE is performed and later on adequate compression garments is ordered. Patients are instructed to start physical activities, appropriate for increasing lymph- and bloodcirkulation in the extremity.
RESULTS: Frequent follow-ups including adjusting the regime and the garments on regular basis provide an optimal treatment. The advantage of physical activities and weight control/reduction for the prevention of LE is stressed.
CONCLUSIONS: Manual lymph drainage is never the first choice of treatment. We seldom see the need for it since volume reduction is achieved with bandaging and garments alone in conjunction with the above-mentioned regimens.

The conversation I had with a different presenter was about this 'study' and it was unfortunately clear that there are MLD skeptics in the research community.

glennie19

***GROAN** Not a good study. Retrospective studies often are not good. Especially if patients/therapists remember the outcomes differently or if only "good" patients are part of the study.

And I would HATE to see insurance decide not to pay for MLD therapy,, ,I get enough grief from mine for the need to go out of network. Is it my fault that no one local in network can provide the service???

glennie19

and dang it,,, what about those of us with truncal? Who just can't seem to get good compression in all the areas that we need it??

carol57

Hmmm...maybe I'll try to find a contact email for Karin Johannson and ask her how they treat the truncal patients. Excellent question, Glennie, and I do wonder how the no-MLD center would answer it. Surely they have patients whose LE is not limited to their limbs.

glennie19

Thanks, Carol, that would be awesome.

I have to say, my therapist talked to a lot of people about my issues. How to compress the left truncal area w/o squashing the remaining right breast, and upsetting the right thoracic outlet problem.

She kept hearing,, have you tried this? Yup,, tried that. Well, what about that? Yup, tried that too.

I was very appreciative that I was high up on her top 10 list!

carol57

Glennie, it sounds like you have a great therapist. People at the conference were quite kind to me; several therapists puzzled over the question of how to don a sleeve without use of the unaffected arm. No briliant answers came out of the discussions, but they were genuinely interested in helping if they could.

glennie19

at least they all had their thinking caps on. Good for them. Sorry that they couldn't come up with an answer for you.