Thank you for your question. I cannot give medical advice for patients in this forum, and I would defer to your lymphedema therapist. Fortunately, it seems as though your lymphedema is under good control. In general, I would not recommend stopping garment wear for lower extremity lymphedema but would encourage you to follow up with your lymphedema therapist and ensure you are replacing your garments frequently.

Surgical protocols tend to differ slightly between facilities. I would suggest working with the lymphatic surgeon regarding surgical protocol preference. However, in my experience, I do decongest the limb prior to surgery, ensuring any postoperative garments are fitted to the decongested limb. I would defer to surgeon preferences regarding when to apply postop garments.

Thank you for your question. Here at Massachusetts General Hospital, we measure patient’s arms often and ask about symptoms we know can indicate developing lymphedema (specifically a feeling of heaviness, change in arm size or sensation of swelling), and conduct clinical exams as part of screening. We use all of that information together with the patient’s risk level for lymphedema, in deciding how aggressive to be with early intervention. In patients at high risk (who have axillary lymph node dissection, or sometimes a combination of sentinel node biopsy, regional nodal irradiation and/or elevated body mass index), we may intervene early. 0.5% larger than the other arm does not necessarily indicate swelling, but without comparing that to a measurement prior to your surgery, it is not accurate for lymphedema diagnosis. When I treat early, I use compression for 12 hours a day for 6 months prior to consideration of weaning compression. I do not believe 5 hours is enough; compression should be worn consistently throughout the day when the arm is in a dependent position (at your side, as it is all day), and may be removed at night (or for some I also give a night garment). My suggestion for you would be to consult with a lymphedema therapist who is part of a screening program and used to seeing early lymphedema. That way, you can have a proper clinical exam, consider your level of risk and make an informed decision with your certified lymphedema therapist.

Thank you for your question. You have a history of lymphedema and have had two surgeries on that side as well. In my experience, and in several small studies (specifically in cases of arm surgery), patients with lymphedema will experience a temporary increase in lymphedema after elective surgery to the limb, but this can be managed well. I would consult with your certified lymphedema therapist for an evaluation, and together consider whether adding in some manual lymph drainage at home, and perhaps multiple layer wrapping temporarily to get the swelling down, is appropriate in your case to manage this flare.

This answer really depends on several factors. Generally, lymphedema is a progressive disease, if it is not treated and maintained, with compression being a first line and important part of treatment. The goal of treatment is to prevent progression to later stages of lymphedema. I have, in some cases, been able to wean garment wear for select patients, but this is done with consideration of risk factors for progression, and close supervision within a lymphedema screening program. I would suggest you work closely with your lymphedema therapist and discuss whether or not they feel there is potential for weaning compression at some point, and if so, this should generally only be attempted with very low-level edema, with low risk of progression and close screening.

Thank you for your question. I would like to be sure I am understanding your question correctly. I think you are saying that after two days of wearing your compression garment, you have pain in the morning, and you have given up wearing your garment. If this is the case, I would consult with your lymphedema therapist (or consult with one if you have not) to ensure you have the right garment and the right fit. If your leg pain is new and ongoing, I would have your doctor examine your leg to determine why you are having this new pain.

Thank you for your question. If you are already in a maintenance sleeve, it should be keeping the edema at bay, and it timing would be up to your preference; I don’t generally time measurements throughout the day.

Showalter et al showed that in 141 women with stable lymphedema, hot tubs did not predict arm swelling (p = 0.05). Triggers are individual for everyone, and patients are always encouraged to self-monitor for signs and symptoms. You may try it for a short time, 3-5 minutes, see how your limb responds over the next 24-48 hours, then increase as you prefer.

Thank you for your question. I tell patients they should sleep however they get the best sleep (many of my patients do not sleep well, so I hesitate to change their preferred sleeping position). Elevation is helpful in early stage lymphedema, however, in later stages, it often does not help improve the edema. Anyone with lymphedema should be wearing a well-fitted night garment, in addition to their day garments. Margie McNeely wrote a lovely paper on the importance of night garments in lymphedema treatment: it is available at:
https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.33943

Thank you for your question. Koya Medical (please note I have no financial relationship with this company), has released a non-pneumatic pump called the Dayspring, which is battery-operated, portable and can be worn during activity. I have tried it with a few patients, and they are happy with it. Information can be found at https://www.koyamedical.com/ and your lymphedema therapist should be able to help you with ordering.

Thank you for your question. I am not aware of research published yet comparing the two. There is a paper on the efficacy of the Dayspring device: Clinical Evaluation of a Novel Wearable Compression Technology in the Treatment of Lymphedema, an Open-Label Controlled Study. Stanley G. Rockson, Pinar Karaca-Mandic, Roman Skoracki, Karen Hock, Michelle Nguyen, Kristin Shadduck, Phyllis Gingerich, Elizabeth Campione, Andrea Leifer, and Jane Armer. Lymphatic Research and Biology 2022 20:2, 125-132. As you are aware, the dayspring device offers portability and a lower-profile device on the leg or arm. This pilot study involved 40 participants using dayspring for 28 days. After 28 days of use, subjects had a statistically significant 18% (p < 0.001) improvement in overall quality of life before using the pump. Individual quality of life domains, and limb volume improved with therapy and participant adherence was very good. I have not personally used this pump yet, however, as I have been meaning to do this for some time, I have a call out to the vendor to learn more and trial the device.

I am sorry you are experiencing this, draining wounds are difficult to self-manage. It is hard to give you an answer without better understanding why you have these draining wounds. For some, there is skin opening or leakage from severe lymphedema, for others, a non-healing traumatic wound, and most commonly, ulcers caused by venous disease. It would be best to have workup to better understand why you have these wounds, and what the treatment should be. If you haven’t consulted with a vascular specialist, this would likely be a good start. If they feel it is appropriate to see a certified lymphedema therapist, this person could help you with treatment which could potentially improve the drainage.

HI, I am sorry to hear this. My suggestion would be a custom measured compression stocking which would allow for any size leg, offer best containment of swelling and be most comfortable. I would only suggest a custom measured stocking if your son has undergone lymphedema management for reduction, to try to get the swelling down as much as possible, then transition to custom stockings for maintenance of the improvement. Certified lymphedema therapists usually have access to custom fitters, if not they will do fittings themselves.

I am not aware of this or any evidence in this area. I am assuming you mean pelvic floor disorder (PFD), but please correct me if I am wrong. I would report your symptoms after your PFD treatment, and perhaps your therapist (hopefully a licensed physical therapist) could work in conjunction with your certified lymphedema therapist to come up with a plan of care that addresses both conditions without worsening your symptoms. If you do not have a certified lymphedema therapist, I would suggest consulting with one. I am curious if you have primary lymphedema of both legs or just one, and, if a lipedema diagnosis has been ruled out? I am just suggesting that as often lipedema has not been considered when there is bilateral lower extremity volume increase, and pelvic floor issues are commonly experienced by patients with lipedema.

Thank you for your question. This type of limb is difficult to wrap in that it is time consuming to apply, uncomfortable for the patient to tolerate, and if the patient is mobile, it can fall quickly. I would anticipate the patient desperately needs intensive reduction therapy. Ideally, this could be done in an inpatient setting if you can find one, where wraps can be reapplied often (requiring foam and lots of padding for the folds) and the patient can be monitored closely. Reduction should be traditional complete decongestive therapy, without exception daily sessions, maintaining the wraps between sessions. Seeing a patient like this 2-3 times a week will be entirely ineffective. The best plan here is to find an inpatient center with a certified lymphedema therapist, or next best is to find a CLT in the community who will see this patient daily. I am not sure of the etiology of the lymphedema (you say obesity), but R leg only so I would anticipate there is something else going on. Referral to vascular and/or lymphatic surgery may also be indicated for such a patient, but only in conjunction with good complete decongestive therapy.

I am not aware of strong research trials in this area, so there is limited data to drive my answer. I strongly believe that slowly progressive and supervised exercise is better than no exercise, and we have lots of research in that area. I believe the most important thing is having an initially supervised program (by a physical therapist accustomed to seeing patients after breast cancer) which progresses slowly to avoid injury, and meeting exercise guidelines (150 min per week of moderate activity and 6-8 exercises for large muscle groups) after breast cancer. The largest exercise trial we have is the PAL trial (Physical Activity and Lymphedema) by Katie Schmitz’ group. It showed that for patients with lymphedema who did resistance training, they had less flares, and if they flared, the flare was less severe, than patients with lymphedema who did not take part in the exercise program. This has changed our advice for patients and we encourage slowly progressive, supervised exercise after breast cancer.  Choose an activity you enjoy doing, otherwise any patient would be much less likely to adhere to the program and stick with it in the long run, which is important.

I apologize for the delay in answering your question. I am not sure if you have lymphedema in your arm and breast, or just in the breast. In any case, it sounds like you are taking care of your skin well and adding some compression. I would suggest you see a certified lymphedema therapist, as there are a few other potential treatment options, including manual lymph drainage of the breast (in clinic or self MLD), different compression options and kinesiotape, to name a few. Often there is fibrosis that also benefits from manual therapy. For most patients, this does subside over time, with very few patients having issues 36 months out. I know this sounds like a long time, and treatment by a certified lymphedema therapist may help get to resolution faster than time itself.

Thank you for reaching out and I am sorry your son is having pain. I would suggest circling back with your son’s physician. Wraps should not be painful, or they would need to be modified in order to make them more comfortable. Possibly more padding is required or less tension on the bandages. I am assuming the PT your son is seeing is a certified lymphedema therapist. If not, I would suggest only seeing a CLT for this treatment. If your son has pain in one area (focally), any redness or heat, I would suggest following up with the physician immediately as these could be signs of infection. In addition, I would suggest ensuring you have a definitive lymphedema diagnosis and there is no other reason for swelling in the legs.

Thank you for your question. Treatment for abdominal lymphedema may include compression (long line garments, or wrapping), manual lymphatic drainage, exercise and self-care. Surgical referral to a lymphatic surgeon may also be considered. Maintenance of a healthy weight is recommended and often there are good resources in this area available. I am sorry that life quality has diminished for you and would suggest following up with a certified lymphedema therapist. Consistency of compression will be key, ensuring compression is replaced every 6 months.

I am sorry to hear you are having a flare. Unfortunately, there is no evidence that any OTC remedies are effective. The mainstay of therapy includes complete decongestive therapy to reduce, followed by day and night compression for maintenance. Unfortunately, these treatments are not effective in such a short time. I would suggest, if you are going to be in Scotland for some time, seeking treatment there, as there are many certified lymphedema therapists there who could potentially help. Otherwise, I would suggest ensuring you wear up-to-date, well-fitted compression, good hydration before, during and after your flight, and mobility/movement of your legs throughout your flight as best you can.

Thank you for your email. I am assuming the infection has been treated and you are followed by a physician for treatment and follow-up of the infection. You state you have been referred to a physical therapist, I would suggest ensuring he or she is a certified lymphedema therapist. They will likely ensure there is no contraindication in your abdomen to compression or manual lymphatic drainage. Treatment may consist of manual lymphatic drainage, compression (such as wrapping, longline compression garments or custom compression garments), skin care and exercise. If you have massive localized lymphedema, you would likely also benefit from a lymphatic surgery consult. You could also submit a question to Jay Granzow for his suggestion as he is a lymphatic surgeon with a lot of experience in this area.

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.