Thank you for your question. I am wondering if you have a certified lymphedema therapist you have worked with in the past? It sounds like you would benefit from further reduction therapy (complete decongestive therapy) and then perhaps new custom garments to keep the swelling down. A pump is really an adjunct to full therapy, not a treatment in and of itself. Each patient has individual needs with a pump, so I would suggest recommendations come from a CLT you are seeing, and only after reduction therapy and new garment fitting. Garment replacement every 6-9 months is also imperative to keep the lower legs and feet under control, and custom flat knit is far superior to off-the-shelf circular knit.

I am sorry for the delay in replying to you, as you have already had your surgery. Feel free to reach out again with further questions as you need.

Thank you for your question and I apologize for the delay in answering online. I am wondering what the etiology of your full body swelling is? Needing full body compression is not common. I agree it is very difficult with insurance coverage the way it is currently. In the next year, you will see great improvements as the Lymphedema Treatment Act is enacted. In the meantime, perhaps trying to decrease the number of pieces you are using, for example, sleeve and gloves, pantyhose and a long line trunk garment, which is 6 pieces. This is still very expensive, however. If you do not have a definitive diagnosis, I would suggest considering further work-up to see if there are perhaps any additional treatment options available to you, as I would guess this has a dramatic impact on your life. Garments, lymphatic imaging, lymphatic surgery and research has come a long way in the past few years, so I would suggest checking in with your team, including your CLT, at least yearly.

Thank you for your question and I apologize for the delay in replying. I did not feel it was my place to advise re: the BI protocol, so I reached out to Kathy Shillue, PT, CLT in the Lymphatic Surgery Program at Beth Israel, who very kindly replied with the following:

“We don’t use any compression or MLD immediately post op, and only resume once the patient is seen and cleared by the surgeon at the 3 week post op visit, and then resume pre op level of compression for all patients. 

If the patient was using self MLD prior to LNT, we would generally resume that with a new drainage pattern towards the new lymph nodes, which we often place in the proximal forearm.  However,  we now are learning much about individual lymphatic anatomy and drainage patterns with imaging, so would also use information from pre operative ICG to assist in directing the patient in self-drainage,  and might use a more individualized pattern.   

I would recommend speaking with the surgeon to find out where the lymph nodes were placed and what might be known from imaging about lymphatic drainage prior to surgery.    This should be a collaboration between surgeon and lymphedema therapist.”

Thank you to Kathy for her quick reply and help with this question!

It sounds like you have a very good program in place! Please ensure you are replacing your garments regularly. Pumps may be used as an adjunct to a program like yours, yes. I would suggest discussing this with your certified lymphedema therapist in case you have any contraindications to using a pump. In general, the only issue I have with pumps is if they are not being used in addition to all of these other things you are doing. They are not meant to be a stand-alone treatment. For patients who are very active, I generally would never recommend a pump if it means losing the time to exercise because of pump treatment. I would prefer a patient is exercising rather than sitting still with their limb in a pump.

Thank you for your question and I apologize for the delay in replying. We know from the literature that lymphatic vessel closure pressure is higher than what we previously anticipated. In a 2016 study by Jean-Paul Belgrado, the observed mean occlusion pressure of the superficial lymphatic vessels was 86 ± 3.7 mm Hg. Saying that, I would suggest pressures of no higher than 80 mm Hg with a pneumatic compression pump. I would suggest trying different pressures and perhaps refitting appliances to ensure the foot and ankle are draining well. Working with company reps, programs can be altered on some pumps, for example, to increase time spent in one area that is more problematic. In any case, pumps have been shown to be an adjunct to a comprehensive lymphedema treatment program, including compression, self-care, exercise and proximal clearance before applying a pump to a limb.

Thank you for reaching out. It sounds like the bra strap is digging into some swelling and causing pitting indentations into the skin. You would likely benefit from either a bra with a very wide band below the breast, or a long line compression garment (like a tank top but specifically for swelling/lymphedema). I would also recommend alternating or changing garments at least daily, to avoid developing welts in your skin. Finally, you could see a certified lymphedema therapist who can try different techniques for this swelling to try to improve it for you, so that your bra does not dig in.

Thank you for reaching out, this is a very challenging situation. Lymphedema should be treated by certified lymphedema therapists, and I would strongly recommend that your employer consider supporting this for at least one if the staff in your facility. There are some programs to help with the cost of this training, and it sounds like your area would very much benefit from a certified therapist. Here is a link to LERN’s https://lymphaticnetwork.org/treating-lymphedema/grants-and-awards/. Please note that this is available to PT’s, PTA’s, OT’s, OTA’s, MD, DO, PA, DC and RN, so perhaps someone in your facility or community could apply for such an opportunity to help prioritize the needs of this patient population. As an MT, please note that manual lymphatic drainage in and of itself is not sufficient to treat lymphedema, as these patients also require compression between sessions to maintain the effects gained in each session. They also highly benefit from exercise. I applaud you for trying to meet the needs of a patient population lacking care, however, this should be met by CLT training.

Thank you for your question. To my knowledge and upon a quick literature review, there is no evidence supporting use of vibration to specifically treat lymphedema. There were two studies completed 20-40 years ago, neither which evaluate the effectiveness of this treatment on its own. I am not aware of a particular frequency recommendation and would suggest more evidence-based methods of lymphedema management which should be provided by a certified lymphedema therapist.

Thank you for your question. I am sorry to hear the mammogram was so uncomfortable for you. However, I have never seen a patient whose lymphedema was incited by a mammogram. You may have some acute breast swelling or discomfort, but this should be temporary and resolve quickly.

Good morning and thank you for your question. Intermittent pneumatic may be used as an adjunct to a full lymphedema treatment program, in addition to compression and potentially manual lymphatic drainage in clinic. It should not be used as a treatment by itself. Compression, fitted appropriately by a certified lypmhedema therapist, should be worn in between pump sessions. Because there are some precautions and contraindications to pump use, it would be best to work with a certified lymphedema therapist and your physician to consider whether a pump would be appropriate in your case. One would always work from the foot to the groin - the direction of movement should be up toward the hip.

Thank you for your question. I would recommend that if you regularly wear compression, you ensure your garments are new and up-to-date. Garments that may be specifically helpful after knee replacement, when the knee is swollen postoperatively, would include velcro-closure wraps or ‘reduction’ velcro-closure wraps, that can be cut down as your leg decreases in size. I am glad to hear the surgery in your other knee and both hips was successful. As after any operation, prevention of infection is key, and infection can certainly worsen lymphedema. It would be best to ensure that anyone touching near your incision practices hand hygiene before touching your leg and follow the surgeon’s instructions regarding infection prevention. Regaining your mobility with the help of the therapy team will be key to ensure good circulation in the leg and ongoing use of your muscle pump which also helps fluid to clear. Best of luck with your surgery.

Thank you for your excellent question. Each person’s lymphedema course is different, so it is difficult to generalize. Lymphedema is a chronic disease, however, it can stabilize, and I see that likely more in cases of primary lymphedema than in lymphedema that is secondary to cancer surgery, for example. I am glad yours seems to have stabilized and is doing well even without compression. I will say, however, if your swelling is still not really well controlled (if the volume of the leg is still greater than the other side), I would suggest continuing with compression and reduction treatment as needed, to avoid lymphedema progressing to later stages. This is because in later stage lymphedema, the tissue changes to a more fat-dominant swelling, which really cannot be treated without surgery and can predispose the limb to infections.

As for weight loss, our research team found that weight loss did not decrease lymphedema risk in patients at risk for lymphedema after breast cancer. Katie Schmitz’ research group found that weight loss did not improve lymphedema outcomes in her WISER trial. However, I would argue that weight loss, for those who are overweight or obese, has so many other health benefits, I would suggest aiming for attaining a healthy body weight. Many patients at risk for or with lymphedema struggle with weight loss on their own, despite healthy lifestyle behaviors. This is sometimes due to treatment side effects or hormonal changes. In those cases, working with a registered dietician and your physician can be helpful.

Thank you for your question. I am wondering if your pain could be coming from a source other than lymphedema. There could be something orthopedic or neurologic, for example, in addition to any discomfort from swelling. In earlier stages of lymphedema, often the discomfort is described as heaviness, or fullness, or a sense of swelling. Pain can certainly be present in later stages of lymphedema, but it is always best to seek out any other issues that may be responsible for pain. These issues could be treatable and help to decrease the pain you are experiencing. I would suggest seeing your PCP, if you haven’t already, for an evaluation and referral as appropriate, including to a certified lymphedema therapist if you have not already received management. You can use a Find a Lymphedema Therapist function on the LERN website found under ‘Living with Lymphatic Disease’.

Thank you for your question. This can be a common problem. I would ask your dermatologist for their recommendation re: moisture lotion. Something heavier/more emollient is usually more helpful as this won’t soak into the skin and disappear. Ensuring you apply this at night and in the morning, is helpful. If you wrap your toes for your lymphedema, ensuring there isn’t a fold in the toe wraps as they approach the web spaces is helpful as wraps can dig into the skin, make sure you are monitoring for openings in the skin. If you feel there is an infection at any point, you should seek medical attention right away.

Thank you for your question. If the goal is reduction, then a product suitable for limb volume reduction would be best. This would be either a reduction garment or self-bandaging. If patients are able to achieve good self-bandaging, this is a good option. Often this takes more than one session, and patients need to be aware that bandaging pressure decreases over the first 24 hours, so ideally, wraps should be reapplied daily.

Thank you for your question. I would suggest that if you have a diagnosis of lymphedema or lipedema in your lower extremities and are advised to wear your compression hose daily by your lymphedema therapist or doctor, I would suggest you do so when rebounding as well.

Thank you for your question. Lymphedema on the ball of the foot can be quite uncomfortable. You may wish to increase compression to 30-40 mm Hg or you may wish to try a toe cap and an open toe stocking, which sometimes can help that area. You could also try metatarsal pads, as you mention. If you wear night compression, a garment that has good foot and toe compression would be important.