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Self Care--All things MLD

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  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    I will second what Minus is saying - definitely reading your research and so appreciate it LW

    My acupuncturist does a very interesting lymphatic massage prior to treatment. She does nodes in the clavicle area, neck, jaw, side of trunk (by pushing), groin, back of knees, finishes with rapid pushes against the soles of your feet. Cycle takes about 3 minutes total for her to complete. She learned it as part of her ongoing education and I will try to find the name of the group she worked with because I was so amazed by it that I wanted to learn more (really stayed in my addled brain didn't it?). It feels wonderful when she completes it. Can feel a little strong during but the result is marvelous. My long winded point being, there are evolving methods out there finally.

  • maggie15
    maggie15 Member Posts: 925
    edited September 2022
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    I have subclinical LE (breast and increasing volume on perometer arm measurement) more than a year after finishing rads. I was going to an acupuncturist for breast pain, and she suggested using a protocol for radiation damage developed by the Japanese after Hiroshima that she had learned about in school but had to look up in one of her textbooks. My right breast is now a cup size smaller than my left as it was after surgery, but I'm thrilled to have to pad my bra. My arm will get checked at the end of the month at my MO appt; I'll be interested to see if that has gone down, too, as it seems less heavy. There is still some nerve pain but it's much improved.

    I don't know whether this would apply to BC LE, but my DH had extensive arm surgery with metal plates and joint replacement due to a "terrible triad" elbow bone shatter. He had horrible LE in his entire arm for 90 days where he couldn't use it at all and had been diagnosed with complex regional pain syndrome. This was in spite of 8 weeks of daily treatment by an experienced CLT and twice weekly sessions with a hand therapist (which did nothing since his arm was so swollen.) His surgeon was at his wits end. As a shot in the dark the surgeon's fellow suggested near red light therapy / far infrared therapy which he had seen used in a clinical trial by neurologists to treat brain swelling on one of his rotations as a resident. The LE went way down in a week, and his arm is back to having 95% range of motion after a grueling 9 months of OT and splints which were effective once the swelling decreased. He used a plugin knee/elbow wrap and a wrist wrap together twice a day, wore a far infrared arm sleeve during much of the day and the CLT's arm compression sleeve and glove at night.

    I would run all this by a medical professional, but the orthopedic surgeon saw no harm in trying.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Hi again, Rah! Interesting about the acupuncturist massage. Do you find that acupuncture helps with LE or do you have it for other reasons? I love the information sharing; hopefully we can learn how to successfully deal with this crap. One thing I remember Binney saying was that each of us has to find the combination that works for us; it seems that what works for one may not work for others. (Hope you are well, Binney! I miss seeing you around here.)

    I'll just toss this in here... I have been consistently "dry brushing" in the MLD sequence and it seems to be helping more than my attempts at MLD alone. I bought a silicone "dog hair" brush (LOL) that works better for me than a natural bristle bath brush. It seems to get a better grip on my skin and I can gently push and release the skin easier than with my hands. I bought it from Amazon and it looks like this...image

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Hello there Maggie and thanks for the information! So the acupuncture technique developed for radiation damage has reduced your LE? Very interesting! How often do you have to have the treatments, and do you know what the technique is called?

    I have heard the term "sub-clinical" LE a couple of times recently and I wonder exactly what does that mean? Is that like Stage 0? from NCBI, "Lymphedema progresses through four stages. Stage 0 indicates a normal extremity clinically, but with abnormal lymph transport (i.e., illustrated by lymphoscintigraphy).

    And wow... your poor husband! That arm surgery sounds brutal, and to develop LE on top of all that must have been a nightmare. How wonderful that they found a treatment that worked to resolve the swelling for him. May I ask which medical facility utilized the near red light therapy / far infrared therapy? Was it performed by the surgeon or by the PT? I will have to do some digging on that, so thanks for sharing with us. I hope your husband is feeling much better now.

  • maggie15
    maggie15 Member Posts: 925
    edited September 2022
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    Hi LW, the "subclinical LE" is increased volume of the pre-surgery arm as measured by a parometer that has not yet met the level for referral to LT. The breast swelling was picked up by my surgeon at a follow-up appointment after radiation where she was going to schedule surgery to reduce the left breast to match the right. Since there had been a cup size difference after I had healed from surgery she knew something was up when I was symmetrical. Naturally, she said no surgery until the swelling on my right breast resolved. She put me on a parometer arm check every 3 months.

    The acupuncturist remembered reading about the Japanese treatment for radiation post WW2 when she was getting her master's degree over 20 years ago. I don't know that it has a name but it involved needles in my back between the shoulder blades. After the first 3 weekly treatments the reduction in swelling stayed pretty stable and I went to every other week. So far so good and I am now trying every month. Of course, my problem is not as severe as others'.

    My husband's treatment was inspired by clutching at straws since none of the usual methods helped and everyone was at a loss for what else to try. He asked about ultrasound and LED therapy since he had seen both used successfully on horses with swollen legs. The surgeon said no to the ultrasound since it can cause the metal hardware to heat, but was OK with trying the LED therapy based on what his fellow had seen experimentally and reading about it. We bought the LED wraps online. The wrist one was https://www.hammacher.com/product/heated-led-wrist.... The elbow one does not seem to be on that website anymore but this one is similar: https://ledtechnologies.com/product/dpl-joint-wrap.... He had dramatic results in a week using both twice a day. He has been able to keep things at bay four years later using them a few times a week. I have seen one study using this for arm LE after breast surgery which mentioned a 30% improvement but there was no proper clinical trial done.

    Rads were not good to me. In addition to the swelling I developed radiation induced pulmonary fibrosis 6 months after finishing treatment. It was scary for a while being on oxygen and prednisone, but the pulmonologist's treatment halted the progression and my lung function is OK in spite of the scarring that remains. I am no longer going to have the second surgery since intubation for anesthesia could cause the fibrosis to start spreading again, and I would rather be lopsided and able to breathe.

    Good luck in your search for things to ameliorate your lymphedema.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Thanks for the explanation, Maggie. I had measurements taken before my surgery by the plastic surgeon who performed the LVA bypass, so every 3 months I get measured as part of a study. At least I got a year before my "official" LE diagnosis! I'm Stage 1 because the slight swelling in my arm will resolve with elevation, but I'm worried about progression.

    I'm glad the acupuncture treatment has worked for you. I find that really interesting, mostly because I have never had acupuncture! And it's so great that they managed to find something to help your husband.

    I believe that rads were not good for me, either. I'm almost positive that radiation messed up the lymphovenous bypasses in my axilla, because I had no swelling in my arm until a couple of months after rads ended. But it is what it is; I can't undo any of that so gotta move forward.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    Hey LW - snarky is OK sometimes. No worries.

    Trying to move to page 4 and see the lastest post, but NOOOOOOOOOOOOOOOO How about these apples?

    image alt="">

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    imageOh well, it won't let me even post the error. Trying again. Access denied - Sucuri Website Firewall

    image alt="">

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Hey -2... that's the exact error I get when I try to edit a post!! Stupid website. Devil Also, I've tried again to enter my diagnosis/treatment info and it always messes up. Ugh.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    lw - check the "post your glitches" site. This is the 2nd time I've posted there & at least I got an answer. AND there was information about a New Upcoming discussion platform...next year.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    -2, I saw the notice about the new platform. I suppose the "good news" is that 2023 is only 3 months away.

    Maggie15--I found this PMC article on Conservative Treatment of Lymphedema that mentions "Photobiomodulation Therapy," which appears to be the treatment your husband had. Very interesting! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8565523/

  • maggie15
    maggie15 Member Posts: 925
    edited September 2022
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    LW - Thank you for the link. It's good to find out the name of the treatment and read a medical reference. Previously we were going just on possibilities and what the orthopedic surgeon's fellow had seen as a resident. The low level laser lights seem to have no effect on cancer cell proliferation so it just might be useful for bc lymphedema. The red light wraps were not cheap but cost much less than the sleeve and were extremely effective.

    The article also mentioned that acupuncture worked for lymphedema. My acupuncturist did mention the moxibustion (heating of the needles) but decided to treat without given that I was six months out from second degree burns over 20% of my body (including my chest.) So far I'm happy with the results. My surgeon's reaction was, "What else would you expect after surgery, radiation and being hospitalized in the burn unit?" I understand that doctors view things through the eyes of their medical specialties so I guess that is why patients have to do their own research and think outside the box.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Here's the 2022 Webinar from ALERT (Macquarie University in Sydney AU); topic is "Managing Lymphedema Latest Research to Improve Outcomes." The video is an hour and a half long but pretty interesting if you have time to watch.


  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Maggie--I'm just pleased and grateful that there seems to be an uptick in the amount of research and treatment for LE. Of course we'd all love a miracle cure but since that doesn't appear to be forthcoming, we'll just have to limp along and see what might work for us! I appreciate the info on the laser light treatment as well as acupuncture. Hope you're having a good weekend.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    My acupuncturist attended a 2 day webinar on lymphatic system with a group called "Stop Chasing Pain". The webinar she attended is entitled "Lymphatic MOJO" and was 16 hours of instruction. This is where she got the expanded lymphatic technique that she uses on me before needling. Its pretty pricey but I may bite just to educate myself further. They give you full access to the webinar plus slides.

    Thanks, LW for inspiring me to get back to work on this.

    Maggie thanks for your information on what you tried. I will bring up with my acupuncturist . By the way, I do let her needle my affected arm. We are very careful with alcohol wipes prior to placing needle, etc to reduce any infection risk and so far so good.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Hey Rah. Hope you're having a good weekend. I will be extremely interested in your findings on the acupuncture method(s). Hope it's not too expensive to get the information.

    As a followup to the videos I posted earlier on the "new method" of MLD by the Australian PT, she finally posted a response on her Facebook page. Several people (including me) asked to see the research papers and wanted to know why she (and a few other Aussies) are touting the "new method" when it isn't mentioned by other mainstream providers. This is her response, which is a bit different than I first understood from the videos ...

    "Hi Everyone, firstly a mega thank you to K, MacDonald for putting up a lot of information and links on the new MLD technique. It is such a dramatic move away from the original method that it can be a lot to take in. Dr Louise Koelmeyer and her research team at Macquarie University are world leaders in Lymphoedema Research and the new technique of firm, slow massage to the same side armpit is the method they are advising. Keep in mind that light pressure is not ineffective or harmful, just found to be not as effective as slow, firm pressure."


  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    Thats interesting. Wonder if they have any patient statistics or interviews to discuss the impact of the new technique?

    My webinar is Oct 1 and 2. I will only be able to participate online a few hours each of those days so will have to digest the rest after the seminar is over. I will share any good tidbits I find. At least those I can retain - my brain these days.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    I have not seen any patient statistics or other validation besides the active displays of lymph movement with the indocyanine Green (ICG) lymphography. They injected the dye into a patient's arm or leg, then performed the massage while charting the movement of fluid real-time on a screen. That is shown in one of the webinar videos but I couldn't say which one; I'm cross-eyed with this stuff.

    I hope you get some good info from the seminar next month.


    .

  • sashas
    sashas Member Posts: 3
    edited September 2022
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    Hi lw and rah. I have been a long time lurker here, and I have had a very satisfactory experience at Macquarie Uni, with the Indocyanine Green Lymphography.

    I was treated in 2017 with ICG at Macquarie and was given a 'map' of how lymph fluid travelled in my right arm and right anterior chest region. The mapping of the lymph fluid strongly informs the therapists' treatment and advice to patients. I had a significant reduction in the size of my arm initially and it has been reasonably stable in size ever since.) I travel to Macquarie Uni twice a year for reviews/check ups (and to stay in touch with what is going on there.)

    I developed lymphoedema in 2009 immediately after a right mastectomy. I had 29 lymph nodes taken and have been proactive in terms of looking after it ever since. Lymphoedema treatment in Australia has changed quite significantly over this time.

    Sasha




  • moderators
    moderators Posts: 8,056
    edited September 2022
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    sashas - Welcome to BC.org! We're glad that you decided to join our discussion boards after all these years! Thank you for sharing your experiences on lymphedema here with everybody. Please let us know if you need any help at all from us. We look forward to hearing more from you soon!


    The Mods

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Hi SashaS and welcome! I appreciate you taking the time to comment; it's great to hear from someone who has had the ICG at Macquarie University. Here in the USA, ICG is typically only used prior to surgery for lymph node mapping and not as part of LE standards of care.

    Do you have experience with the "new" MLD technique of using a firmer stroke and also directing fluid to the affected side? If so, how has that worked for you (as opposed to the original instruction of using light touch and moving fluid away from the ipsilateral side?) Thanks again for your input to the discussion!

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    sashas - yes WELCOME. The more voices heard the better we know what else to try.

  • sashas
    sashas Member Posts: 3
    edited September 2022
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    Hi all and thanks for the welcome.

    I use the firm and slow method of MLD as directed by the physios at Macquarie Uni. It did seem odd at the time, making the change from light touch to firm, and not redirecting lymph all over the place. Now I follow the map made by the ICG and direct it towards the end of my collar bone. In 2019 they recorded a 36% decrease in volume in my forearm, (which is where most of my arm swelling seems to be. Am sorry but I can't remember the latest numbers from my last visit, it works so I don't take that much notice of the numbers these days.)

    I have a reasonably regular 6 weekly massage with a local therapist (who has studied at Mac Uni), and I visit the University Clinic itself every 6 months for measurements and follow up. Thinking about it now I haven't had a significant swelling since 2017 so having an understanding of where the fluid goes seems to be paying off. Previously, I had had a couple of bouts with weeks of compression bandaging (like a mummy) to keep it under control. I do wear a made to measure sleeve everyday, (which I really really dislike, but wear it none the less).

    I think it's been worthwhile overall, I am certainly glad that I found them nearby, and that someone is making an effort to research lymphoedema because it really is overlooked by the general medical profession.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    Sashas thank you so much for sharing your experience. I am so thrilled you were able to get the mapping and have had effective results. It really does make a lot of sense to get an image of exactly where your lymphatic system is compromised, then develop a tailor made therapy to accommodate it. I have not had access to ICG at all. We are still in the stone age here. Diagnosed only by measurement changes and visual/pain cues. We have so far to go. All we can do is push for the next generation of sisters so that their experience is better than what we went through.

  • lw422
    lw422 Member Posts: 1,399
    edited September 2022
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    Thanks for your response, Sasha. For the past week or so I have been using a firmer stroke and directing fluid from my arm to my ipsilateral axilla. I also massage that armpit which I was not doing previously. I've been using a silicone brush to dry brush and direct the fluid and I'm happy to say that I believe this is actually working for me. I have noticed a dramatic softening of the "towel roll" under my arm where my truncal LE presents.

    I have also switched from wearing a bra to wearing a shaper camisole that fits high up under my arm, and a Solidea Active Massage sleeve. I'm so thrilled that the Solidea sleeve fits me, is not so TIGHT and horrible, and is a reasonable price (my insurance does not cover any LE garments or supplies.) S-l-o-o-o-o-o-o-o-wly I'm figuring out what will work for me.

    I'm going to pick the brains of the LE specialty docs at MD Anderson about the ICG mapping as used in the Macquarie model.

  • minustwo
    minustwo Member Posts: 13,116
    edited September 2022
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    I routinely use a firmer touch - not because it was recommended, only because I've always seemed to fall into that.

    LW - Thanks for the sleeve recommendation. Looking forward to what MDA tells you about mapping.

  • sashas
    sashas Member Posts: 3
    edited September 2022
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    LW- Happily I have abandoned bra wearing since I retired. It is so much more comfortable! (Not having to look 'presentable', or use prostheses for work everyday is a great feeling.)

    The cost of compression garments is really frustrating, and it takes a lot of time, effort and money finding what works for you. I agree that it is a very slow process to get to place where you feel reasonably confident that you can deal with your lymphoedema, or have access to capable, professional people who can help you.

    rah and minus two - I find it difficult to 'go slow' with the firm touch. I start out slowly, but seem to always end up speeding up somewhere along the way. If I pay attention to what I am doing I can 'feel' the difference in the parts of my arm that would like to harden up, compared to the softer less problematic areas.

  • rah2464
    rah2464 Member Posts: 1,192
    edited September 2022
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    Sashas I agree, I can find those spots as well. Took me some time to understand what I was feeling because originally I thought surely that was in my head. I think learning to do self massage is important because then you stay intensely connected with what changes are occurring in your body (kind of like those breast self exams eh?). But I truly would rather not have to add this daily activity on my list. Oh well

  • lw422
    lw422 Member Posts: 1,399
    edited October 2022
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    Hello again to anyone following this tome. Rah--I was wondering whether you attended the webinar on the Mojo thing and what your take-away is if you'd care to share. Coincidentally I recently ran across a video on Youtube referencing the "Stop Chasing Pain" website and the methods used by Dr. Perry Nicholston. Here's the video...



    Lots of "patting and tapping" going on, but interesting nonetheless! :biggrin:


    Sasha--I hear ya on abandoning the bra! I've tried just about everything since having a single mastectomy and finally settled on no prosthesis at all. I wear a lot of black and don't think anyone even notices that I'm a "uniboob!" Hope all is well with you.


    Minus 2--I went to the appointment with the plastic surgeon at MDA to discuss surgical options. Unfortunately the wait time was more than 3 hours so after an hour and a half I got up and left. I don't want to deal with a doctor who has so little regard for his patients. So on to the next!


  • minustwo
    minustwo Member Posts: 13,116
    edited October 2022
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    LW I hear ya. My favorite is my eye doc. She had a sign posted by the check in window to the effect that ir you're still waiting 15 minutes after your appointment time. please tell the receptionist - 'your time is as valuable as ours'.

    We you there to discussing the lymph node surgery?