If you are speaking about the physical therapy for chronic edema, the acute phase of treatment takes 4-6 weeks, on average

As you describe it, the breast cancer treatment can potentially be responsible for the arm and breast on the left side, but this would not explain the leg swelling. You can certainly start the diagnostic journey with your primary care physician but, if necessary, you can also consult the LE&RN; Centers of Excellence page for a center that is convenient to you for a consultation with a lymphatic specialist.

The ingredients are all plant-derived. This product has certainly never been validated for lymphatic indications. It is likely that some of these ingredients have very mild diuretic properties, but the claims on the web page are not trustworthy. I don’t see any implicit danger in taking this preparation, but I doubt that it will have much impact. Proceed cautiously if you wish.

The criteria for the next phase of the invesitgation will certainly be different and likely expanded, but this next phase is still in the active planning stage. Stay tuned!

A better treatment would be based on a thorough clinical evaluation. I suggest consultation with a lymphatic or vascular specialist. The LE&RN; Centers of Excellence page may be helpful here.

The trial is progressing marvelously. We hope to complete data analysis by January 2026; the expanded access program is progressing beautifully as well, and should be published by the end of the year if all goes well.

Both the disease and its treatment can theoretically be linked to lymphedema, so your observations might appear to be valid.

Please don’t worry—our research will continue, uninterrupted!

You are right, however, to worry about the future of US biomedical research, with the potential withdrawal of grant support for these vital activities.

Thank you for your question. I am sorry to hear that you have found air travel challenging; quality of life is so important and I like to see patients able to take part in all the activities they enjoy. I would suggest that you revisit your garments, as, if you are feeling swelling, you may need additional pressure in the garment, layering, or updated garments, perhaps. It would be helpful to revisit other options with your fitter/lymphedema therapist. As the seatbelt sign stays illuminated much more during flights, it is also harder to move around the plane. I would suggest whenever you can, walking around, and if not, do ankle pumps and ‘pedal’ in your seat every 20-30 minutes or so. I also always recommend hydrating well the day before and the day after the flight. Avoid salty foods on the flight, which are so often served. This will minimize potential overall fluid burden, which some people experience in their feet or legs with flying.

I can only reassure you and the radiation oncologists that there is no evidence that manual therapies for lymphedema adversely affect the cancer treatment outcomes or increase the likelihood of cancer spread.

Thank you for your question and I apologize for the delay in answering it for you. Unfortunately, it is impossible for me to know what may be causing this, but it certainly could be associated with nerve damage. In that case, she could see a neurologist for a definitive diagnosis, if her doctor feels that is appropriate. If she is turning her foot when she walks, I would worry about her injuring herself and would want to be sure that joint is protected. I would suggest she also continues with her lymphedema therapist, who could perhaps take a look at this or refer to a colleague to help diagnose the problem and minimize pain while maximizing function.

I recommend that you consult the LE&RN; Centers of Excellence webpage. There you will find a complete listing of the centers that should be able to accommodate your medical needs. You’ll need to reach out to them individually to determine if they offer virtual visits or whether consultation will be required in person.

Yes lymphedema is an impairment of the lymphatic circulation, which is part of the immune system. The regions of the body that are affected by lymphedema have an intrinsic, regionalized immune impairment.

I am sorry to hear your mom is struggling with swelling like this. However, it would not be acceptable for me to make specific treatment recommendations here. My suggestion is to ask the treating doctor to refer to a certified lymphedema therapist (likely a physical or occupational therapist who specializes in lymphedema) if there is one in the hospital, otherwise, a physical therapist who specializes in medicine or medical oncology. Your mom’s treatment by the therapist will really depend on the reason for the swelling (with a cancer recurrence, for example, there can be liver or kidney issues that can cause swelling, or disease in the lymph nodes which can cause swelling). Swelling associated with some of these causes may be helped with lymphedema treatment, and in other cases, moving fluid up away from the legs could be unsafe. In these cases, the main approach is medical management, and focus is on comfort and basic function.

Increased female hormone levels can hasten the appearance of lymphedema, but pregnancy per se is not considered to be a risk factor in this kind of post-surgical setting. The removal of 4 lymph nodes is considered to be a ‘sentinel node’ excision, so the lifetime risk is quite low (<5%).

Thank you for your question; this is common, unfortunately. Sometimes, this can be because your upper body moves differently after surgery or radiation, for example, creating muscle imbalances. I see many patients like this, and it is important to address the muscle imbalance - stretch what is tight, strengthen what is weak, and get the shoulder and arm moving really well and strong again. Other times, this can be because of compression from the garment, which can be let out with a custom sleeve. Or, it can be a bit of both! Depending on your history, if your lymphedema is secondary to cancer treatment, for example, I would suggest treatment with a PT who specializes in seeing patients after cancer treatment, as he or she will treat this often and come up with a comprehensive treatment plan that should improve/resolve this for you.

Thank you for your question, this is a really common problem. I have found that the best approach to this is a good custom compression garment (flat knit, at least Class 2 or even a Class 3 pressure) which go to the waist. If you have lymphedema on only one leg, the opposite leg can be made into a short, and you will essentially be wearing pantyhose with one leg to the toes and the other to upper thigh. This tends to really control this area. You could also pursue a different pump which includes the lower trunk, if this is safe for you from your provider’s standpoint. I have found both of these things together really control that area nicely.

Knee replacement is feasible in the setting of lipedema. If there is a lymphedema component, the risk of infection increases, but it is still feasible. Body weight is an additional risk factor, with or without lipedema or lymphedema.

I am again sorry to hear you are so uncomfortable, however, given you are having abdominal pain increased by treatments for lymphedema, this needs to be evaluated by a physician and collaboration between your physician and your lymphedema therapist will be very important. I reiterate it would be inappropriate for me to offer individualized treatment advice virtually; I strongly advise you contact your physician and your lymphedema therapist.

Thank you for your question. Intermittent pneumatic compression pumps can be an effective adjunct to lymphedema management. They should not be used as a stand-alone treatment, and should be used together with other treatments, including manual lymphatic drainage, compression, elevation and exercise. They should be prescribed by a certified lymphedema therapist who can work with your treatment team to ensure the pump is safe for you to use, and to ensure you have all of the other components of your treatment in place safely given your presentation and medical history. You can wear a compression garment under the pump, or you can use the pump against your skin or over a light piece of clothing.

Thank you for your question. If I am understanding you well, you only had your legs wrapped twice. Typically, the first part or reduction phase of lymphedema treatment is done with almost daily treatments until the leg reduces completely and the volume plateaus/becomes stable without any further change. Only at that point should custom made compression be used. Unfortunately, sometimes, transitioning to garments after wrapping is difficult and is a bit of trial and error. Garments can be customized with loops, zippers, velcro for example to help them be easier to apply. Sometimes a different type of garment is better, and sometimes the measurements need to be altered too. Wraps that fall off are certainly not effective to maintain the effects of the first part of your treatment. I would loop back with your compression fitter and your lymphedema therapist to get this right for you. It may be that you need more reduction therapy, or just that you may need further attempts at getting your compression right for you. There are lots of options, so hopefully you can work together toward a better solution for you.

Thank you for your question and I am sorry to hear you are so uncomfortable. My first thought is that for some reason, your lymphedema is worsening, and/or there is a medical reason why you are not able to clear fluid from your abdomen/body and so you are getting painful fluid accumulation in your abdomen. In either case, it seems your condition has worsened, and I would strongly suggest you seek care immediately with a physician to determine why your abdomen is painful and swollen, and a certified lymphedema therapist to collaborate with your physician(s) to safely treat your lymphedema. Unfortunately, I am not privy to your medical history or diagnosis, and therefore I should not be making treatment recommendations for you. I strongly suggest medical workup to help determine what treatment(s) may be helpful to you, and I am hopeful that this will make you more comfortable.

There is not imaging technique that can identify the site of damage with certainty. There is no upper age limit for imaging eligibility; this would be determined only by co-morbidities (accompanying diagnoses) that might limit the safety of the imaging technique.

It is impossible to say without fully evaluating you, but the 2 reactions that I can provide are:

1. lipedema is typically extremely symmetrical until very late in the disease evolution. If you indeed have only R-sided swelling, this is very unlikely to be lipedema
2. the false negative rate of lymphoscintigraphy is quite high (some estimate 15%), so a negative LSG does not exclude lymphedema in someone where the clinical presentation supports the diagnosis.

I hope that this helps a bit.

Yes, it is absolutely safe and appropriate to take this drug for blood pressure control. We just do not want to rely on diuretics to control lymphedema under the wrong circumstances, but it will not provide any harm if it is appropriate for your blood pressure control

Hi Ellen, thank you for your question. I am not sure if you have both lipedema and lymphedema? I find that anything with texture is helpful for small areas of swelling that are fibrotic (feel scarred) in either case, however, with lipedema, being gentle is important as the skin is often easily bruised. I will use textured toy balls, golf balls, or lacrosse balls, to roll over fibrotic areas as an adjunct to manual lymphatic drainage or soft tissue mobilization. Textured compression garments, such as quilted night garments, for example, can have the same effect, and foam chip bags or swell spots placed inside compression can also be helpful. I am not sure if you have had treatment for your lipedema/lymphedema, but it is really important to find a certified lymphedema therapist who knows about your particular diagnosis and can provide evidence-based treatment based on your individual needs. This person should have several options to review with you to find what works best for you.

Weight loss is an important treatment option and can provide significant relief for many Lipedema patients.  While your mother-in-law has considered a keto diet, other options are possible, and she may consider seeking a referral to a comprehensive weight loss center.

I am sorry to hear you are uncomfortable postoperatively. Waist high garments are the standard of care based on established surgical programs globally, rather than a local recommendation. Garment fitting is highly individualized and typically, garments are fitted well before surgery so we can be sure the patient can tolerate the garments in his or her daily life. Given you are uncomfortable, it is possible your garments need to be refitted to be more comfortable for you. Unfortunately, I am not sure of your diagnosis or your treatment to date; I would strongly recommend you reach out to your treatment team (certified lymphedema therapist and/or surgeon’s office) to discuss your discomfort in compression directly with them. These garments are important so you have the best outcome possible after surgery; please discuss with your team prior to discontinuing garment wear.

This is something best discussed with your surgeon who performed the surgery.

These are not typical symptoms of primary lymphedema. I suggest that you seek additional evaluation with your physician to identify the cause.

Thank you for your question and I am very sorry to hear you do not have the strength to stand. I would suggest that if your exercises are easy for you, but you cannot stand, your strength is not quite there yet to support your body weight. I would hope that your strengthening exercises are being progressed so that they stay challenging for you, allowing for your body to strengthen. If you are not regularly seeing a physical therapist who is guiding you to progress your exercises, I would suggest strongly that you do this, if possible in an outpatient setting so that you can continue to progress.

There is no known relationship between lymphatic function and IBS. I would be inclined to believe that this potentially related to radiation-induced damage to the colon itself, but is unlikely to be lymphatic.

Thank you for the inquiry. 

No “one size fits all” solution exists for any patients, including lipedema patients.  For best results, I use my Lipisuction method which includes coordinated lymphedema therapy, bandaging and compression garments.  Aspiration of solids is performed with the appropriate cannula and machine, depending on how advanced the patient’s condition is.  If lymphedema is also present, we use our Suction Assisted Protein Lipectomy (SAPL) protocol instead.

It can be successful in giving you varying degrees of improvement if don properly and if you are a good candidate

Yes, there are specialists who can determine if you have additional appropriate treatment options. I recommend that you consult the list of LE&RN; Centers of Excellence as a starting place to identify a geographically appropriate consultant for your care.

Thank you for your question and I apologize for the delay. It sounds like your lymphedema is not only in your lower leg. I would suggest you work with a certified lymphedema therapist to determine the most appropriate compression for your leg, which may include compression over the knees, and/or over your upper legs or abdomen. Please keep in mind your garments should be replaced every 6-12 months so that they will remain effective. Your certified lymphedema therapist or certified fitter can help to get you on a schedule so that your garments are always current and remain effective.

Yes, this a common, non-invasive imaging study called lymphoscintigraphy. This will help to determine whether or not there is a functional disturbance in your lymphatic circulation in the legs.

This would not commonly represent part of the natural history of long-standing lymphedema. Lymph node enlargement can have a wide variety of causes, and most pose no reason for concern; however, this should be clinically evaluated. The evaluation starts with a physical examination, which can, by itself, be very reassuring. If this is not sufficient, there are imaging techniques that will help to determine whether there is a cause for concern. It is only after these steps that fine needle aspiration or biopsy would even be considered.

I cannot deem this is an intervention that is free of risk.

We are at the dawn of our understanding for the role of lymphatics in the development of Alzheimer’s disease. I am not aware of anyone in the US that is attempting a surgical intervention. This would generally be considered as premature and potentially risky. We need to develop a much more robust science around this question before applying surgical solutions.

The most important resource for older patients is the options for Velcro wrap garments to replace the stockings and sleeves that are difficult to put in place. For those that have a bit of assistance, use of pneumatic compression devices is also recommended as an adjunct to daily self care.

Thank you for your I apologize for the delay in my reply, we are having technical issues. Clearly you have clinical lymphedema and would benefit from decongestive therapy. There are situations where seeing a physician prior to starting lymphedema management with a certified lymphedema therapist is important; your PT will refer you to your physician if he or she feels you should receive medical clearance prior to starting decongestive therapy.

Although the central nervous system lymphatic network has now been linked to migraine headache, for example, we have no clinical insights yet into how this can be evaluated or treated. I think that the best route to a potential diagnosis might be to pursue further evaluation of your skin and your spleen.

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.

In my experience, Lymphaticovenous Anastomosis Surgery (LVA Surgery) produces improvements in clinical outcomes even if the surgery sites are distal (towards the fingers or toes from the center of the body) to the site of obstruction.  Perhaps a better analogy would be that opening up a few additional exit ramps in front of a freeway traffic jam can lighten the traffic arriving at the point of obstruction.

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.

It is not possible for me to make a specific recommendation for this patient but, in general, low dose, prophylactic antibiotics are suspended when a course of active, full dose antibiotic therapy is underway

In my practice, all surgical candidates must receive a complete evaluation to be considered for lymphedema surgery.  This typically includes evaluation by a certified lymphedema therapist, appropriate imaging studies and evaluation by an experienced lymphedema surgeon.  Conservative therapy should be tried first.  Before finding a surgeon, it is important to find a good lymphedema therapist for the initial conservative lymphedema therapy.  Lymphedema therapists often are good resources for surgical referral.

Unfortunately, lipodermatosclerosis is a late skin reaction to chronic venous hypertension. The condition is not reversible. The underlying venous disease can possibly be stabilized, which will prevent progression of the lipoodermatosclerosis.

I suggest that you seek referral to a vascular physician or surgeon who can evaluate and treat your venous system and then guide the orthopedic surgeon regarding the safety of the orthopedic procedure.

There will be an acebilustat webinar update in January. Everything is looking optimistic but, unfortunately, the FDA does not allow skipping of steps to approval.

Total knee replacement can be performed in the face of lymphedema, but you need to know that the risk of infection is increased in this setting, so appropriate surveillance and care are necessary.

no.
as long as you are healthy and have functioning lymphatic vessels.

Catopril is primarily an inhibitor of angiotensin converting enzyme. It has been shown, in old crystallographic work, to minimally interact with the zinc element in the LTA4H enzyme, but this affects primarily the aminopeptidase action of the enzyme. To my knowledge, there has been no meaningful demonstration of reduced LTB4 production in the use of captopril, and it has not been studied in lymphedema.

The bestatin trial was prematurely terminated for financial reasons, hence no formal results. We are currently investigating the ‘next generation’ drug with a similar, but more potent, effect, called acebilustat. The trails are promising but still ongoing, therefore there are no results to report as yet.

Recurrent cellulitis can be managed by an internist or family physician. If needed, you can consult with an infectious disease specialist. The lymphedema may require referral to someone who professes expertise in the care of the problem, but the cellulitis is a direct consequence of the lymphatic damage that has caused the lymphedema.

Varys depending on provider/institutions.

If you wish to participate in our studies, please contact:

Marissa Dobry
.(JavaScript must be enabled to view this email address)

Please describe your current problem so that we can determine if you should proceed with us.

CCBs do have edema as a common side effect. Therefore, anyone with preexisting edema can experience worsening of the baseline edema if CCBs are added. They are not contraindicated but, perhaps, should not be a first choice. Your doctor has many other drug classes to choose among as alternatives.

You present a question that doesn’t have an obvious answer. One of the two opinions that you’ve received is incorrect. Perhaps a third consultation will help to resolve the question. If you live near a center that uses MRI for lymphatic imaging, it is more sensitive and specific for lymphedema than lymphoscintigraphy, and will leave less doubt about the diagnosis.

There is no harm in treating your edema problem as lymphedema, even if the exact cause of the edema is unclear.

I am also a pianist so I feel particularly empathetic regarding this question. I’m afraid there is no ‘cure all’, but i would advocate for aggressive hand compression when not playing, and also consider the use of dynamic compression devices on a daily basis following piano sessions.

varies depend on a patients: LVB & Lymph node transplant, liposuction, debulking…any or some of these might be options.

My simple answer is that most of the solutions on the horizon will be theoretically effective for both primary and secondary forms. Many of the studies are done on secondary lymphedema because the pool of subjects is much larger, but the work will extrapolate to primary as well. The identified genetic causes may ultimately have some targeted therapies based upon the individual mutations.

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.

Increased temperature is a stress on the lymphatics if there is underlying dysfunction or damage. Sun exposure does create lymphedema, especially if there is sun damage (sunburn). In a related way, sauna has been well-documented as an absolute risk factor for lymphedema patients that are prone to lymphedema.

The lymphedema affects only your *regional* immune responses. Your systemic immune system is unaffected, but immune traffic in the involved arm is theoretically compromised by the lymphedema. This is one of the reasons that lymphedema patients are prone to soft-tissue infection in the affected regions of the body.

Thank you for the kind comments. The progress of the work is exciting. I certainly believe that effective drug therapy for lymphedema is in sight. To reach for a ‘cure’ is highly optimistic, since most chronic adult diseases are treatable, but not curable. However, I will be optimistic that we can accomplish this. At a minimum, I do hope that acebilustat, or another drug like it, might ultimately prevent lymphedema in high-risk individuals, in addition to providing very important clinical improvement and stabilization to those that already have the disease.

There is very little data to suggest that acupuncture might be helpful in lymphedema. If it is, it likely will improve symptoms such as discomfort, rather than reducing limb volume.

There is little to worry about, provided that your acupuncturist is willing to avoid placing the needles into the involved regions of the body, or any that are still at risk because of prior surgeries, radiation therapy, or other risk factors. If the problem is a primary lymphedema with a likely genetic cause, this approach may not be as desirable because, in theory, all segments of the body would be at hypothetical risk for future edema.

Response from Dr. Skoracki:

Not unless there was widespread lymph node involvement with cancer prior to the radioactive iodine treatment. In that case other surgery would usually be indicated and radioactive iodine alone would not likely be the only therapy. Short answer – I have never seen lymphedema of the head and neck develop after radioactive iodine treatment alone.

Hope that helps

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.

Dr. Skoracki’s response:

The eyelid issues are unrelated. The drainage from the head and neck is to a different set of lymph nodes. Having said that, depending on the systemic treatment of the breast cancer, this can have effects on other parts of the body including generalized swelling. If that is the case, your medical oncologist will want to know.

Unfortunately, the process for new drug approval is rather lengthy. We are currently halfway through the Phase II trial. If it is deemed worthy to progress to Phase III, that will likely be a larger, multicenter trial that will be conducted over 1-2 years. At that point, the FDA can consider whether to approve the drug.

There is no one standard protocol that is universally accepted and all of the protocols in use have merit. Perhaps you are confused by the difference in lymphoscintigraphy for sentinel node identifcation versus what is required to assess lymphatic function in relationship to lymphedema.

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.

That is highly variable, and depends largely on insurer responses to requests and to other local scheduling issues.

It is difficult to know what is actually present within your body, but if there are no findings of pathological lymph nodes on CT scans, there is no reason to be concerned about the size of the ndoes.

Appropriate treatment of lymphedema can have a wonderful impact on the symptoms.

In general, the BMI relates to overall surgical safety for an elective procedure. Most surgical teams refuse to do surgery electively if the BMI is over 40. If you can qualify for this criterion, the LE&RN; Centers of Excellence program should help you to identify a center where the surgery can be performed.

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.

The only blood test that would apply in this situation is genetic testing, but this only makes sense if you have an identified mutation that you are screening for in your newborn.

The clinical trial is expected to be completed by the 4th quarter of 2025.

If you don’t have access to a doctor that professes expertise in lymphedema diagnosis, I suggest that you contact one of the LE&RN; Centers of Excellence to be seen for diagnostic purposes. They can decide if imaging or other studies are appropriate.

I have not heard this from my patients and this is not yet reported in the medical literature.

Acupuncture is not contraindicated, although its efficacy has not been well-established. For safety reasons, the acupuncture needles should not, however, be introduced into the areas of the body that are affected or at risk.

In general, NSAIDs are considered to have an anti-cancer effect. We don’t have enough data on LTB4, specifically, to say anything additional.

In US, most commonly training in Plastic surgery and microsurgery.

I recommend that you seek care at a LE&RN; Center of Excellence, where you should be able to find a clinician with this skill set. Bedside diagnosis involves inspection and palpation of the tissues, along with examination features that will help to exclude other potential causes.

The choice of treatment of scrotal lymphedema is based upon a thorough diagnostic evaluation, so I’m afraid I can’t directly answer the question.

Diagnosis can be made in infancy, usually by thorough examination. Lymphedema can also be addressed in infants. I suggest that you seek a referral to a physician or therapist who is prepared to deal with small children.

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.

Theoretically, yes, but there is no data yet to directly respond to your question.

The only definitive identification of the cause of lymphedema is in the setting of genetic analysis that identifies a causal mutation, but this is exceedingly uncommon.

There is only one reason to know the exact cause of the lymphedema, which is that genetic causes, if identified, can be presumed to be heritable by the offspring of the patient and may influence family planning decisions. All lymphedemas are fundamentally treated in a similar or identical fashion.

I’m so sorry, but this is too complex to render an opinion from a verbal description. I strongly advise you to obtain a referral to a suitable interventional radiology department to consider a treatment approach

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

Both bariatric surgery and GLP-1 agonist drugs can theoretically be effective even in the face of your other diagnoses.

The answers to most of your questions will require a thorough evaluation of your individual case. However, it is unlikely that hidradenitis suppurativa would aggravate or cause lymphedema. Hypothyroidism is not a cause of lymphedema, but it can be the source of edema that can be confused with lymphedema.

You are correct. The current trial is limited to arm lymphedema. We do intend to study leg lymphedema in the future, but those studies are only in the early planning phase.

We hope to be in a position to publish within the next 12-14 months.

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.

If you are asking about lymphatic microsurgery to reduce the impact of lymphedema, most specialists would advise waiting until full adulthood is reached. The benefits of the surgery will be optimized and the complications minimized if you wait, since this surgery is purely elective.

Your other questions are complex. These laboratory abnormalities should be investigated thoroughly—it is not entirely apparent how they would directly relate to the lymphedema.

The diagnosis of lymphedema as a distinct form of edema relies on a combination of physical examination and lymphatic -specific imaging, either by nuclear medicine (lymphoscintigraphy) or MRI.

Actually most patient except for the most severe/end stage patients can be considered for VLNT.

before considering surgery, you should make sure that you have the correct diagnosis and that you are a good candidate. Not everyone is a good candidate for lymph node transplant.

Did you have lymphoscintigraphy to confirm diagnosis?
what is your BMI?

if you your BMI is very high, you may benefit from weight lose first.

Swollen painful lymph nodes typically indicate that the lymphatic system is responding to something with acute inflammation (either infection or an inflammatory condition). This should be evaluated medically. One cannot directly reduce lymph node size, but they will shrink once the inflammatory reaction subsides.

I would be delighted to try to help but, unfortunately, my expertise is only available in the context of a full medical evaluation. If you are not close to Stanford, perhaps you can seek a specialist in one of the closer Centers of Excellence.

I’m afraid that I don’t have any disease-specific recommendations for lymphedema-associated pain. Yoga is a wonderful solution, but hot yoga may not be ideal. While there haven’t been studies of this particular intervention in lymphedema, we do know that sauna use can be a specific trigger for lymphedema in patients who are at risk. It would be wise to limit the high temperature exposure—I recommend under 105 degrees F.

Thanks for your question Liza. Glad our surgery worked great on the forearm!

The upper arm can be more difficult, especially if you have had an LD flap surgery. Also, swelling above the elbow tends to be more fatty than fluid, so LVA may not be so appropriate.

We would be happy to discuss this with you in clinic, and think about an MRI scan if you wanted to look into it further.

I’m so sorry, but the answer is no. I don’t agree that lymphedema patients cannot fly, but, in any case, the studies that are being undertaken are only approved and funded at Stanford University.

No, not necessarily, but they have the capacity to represent a risk factor, depending on the regimen.

Yes, I am aware and collaborating with these scientists.

The drug is intended to reverse the pathology of lipedema, which means that it will work in the regions of the body affected by the disease. It is not a muscle-building compound.

This pattern is absolutely within the spectrum of acquired lymphedema from cancer therapy. The onset is atypically delayed, but we do see this in ~5% of patients.

Unfortunately, if this is lymphedema, subsiding fully is unlikely. The skin color has a possibility to return to normal. You should consider a conversation with the surgeon to ask if there is a level of edema that he/she would be comfortable with. If it is only full recovery that is the expectation, perhaps you should seek a second opinion to find a surgeon with a more liberal approach.

Without knowing the details, I can assure you that you do have residual lymph function despite the surgical excision, which is admittedly extensive. There are ways to stimulate lymph function beyond baseline capacity. This typically involves work with a trained lymphedema therapist who can provide modalities to improve function. Unfortunately, at this time, there is no cure.

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’m afraid that antenatal diagnosis of the CPL is difficult or impossible, but the presence of the hydrops fetalis is actually a strong clue. This is an aspect of fetal development that can be identified by ultrasound prenatally.

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.

Since you ask about LTB4 in the title of your inquiry, we do believe that all forms of chronic edema are likely to be responsive to LTB4 antagonism.

The only option, other than using the most accessible arm, is to ask your doctors if there is an indication for placing a port for infusions and phlebotomies.

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.

The best choice would be a physician lymphedema specialist, because they are trained in both diagnostics and therapeutics, and can integrate the response with your existing diagnoses. If this is not feasible, you can consider lymphedema-trained PTs and OTs to have equivalent expertise.

There is reason to believe that lipedema will respond to LTB4 antagonism. Please watch the published literature as it evolves.

Yes, I do believe that a thorough evaluation is appropriate, in order to determine the exact cause of this problem.

They are not typically related.

Surgery can be performed in the face of existing lymphedema, as long as there is recognition that the lymphedema can be negatively affected, at least transiently. If the function of the shoulder is impaired, this should be addressed. The complications, if any, can be addressed once the surgical healing is complete.