Areas of expertise:
Dr. Rockson is the Allan and Tina Neill Professor of Lymphatic Research and Medicine at Stanford University School of Medicine. After earning his medical degree from Duke University School of Medicine in Durham, North Carolina, Dr. Rockson completed his internship and residency training in internal medicine at the Peter Bent Brigham Hospital of Harvard Medical School, in Boston, Massachusetts, and fellowship training in the cardiac unit of Massachusetts General Hospital, Harvard Medical School. He is a fellow of the American College of Cardiology, American College of Angiology, and American College of Physicians, as well as a member of the International Society of Lymphology, American Society of Internal Medicine, the Society of Vascular Medicine and Biology, and the Paul Dudley White Society, among others. Dr. Rockson is the Director of the Stanford Center for Lymphatic and Venous Disorders and serves as Editor-in-Chief of Lymphatic Research and Biology.
I have radiation-induced lymphedema in my abdomen and upper thighs (uterine cancer). Five plus years out from treatment, I find myself having severe stomach pain and diarrhea, with no apparent link to diet or illness, or other trigger. Could it be IBS from the lymph pooling in my abdomen?
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.
I have primary lymphedema in my leg and have been treating it with MLD and Tribute night garment. It is slowly progressing and I am exploring other methods to improve my condition. Is there a doctor I can see and speak with about my options? I am 22 years old.
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.
I was diagnosed with lympodema and have struggled wirh complications.. I went to a dr that treats thus and he says he doubts I have it. He told me he would give me a test that runs dye in feet that runs up legs has anyone ever heard of this?
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.
I have lymph node swelling both right and left 2.1 cm is largest. I can’t get into a lymphedema specialist until Jan and don’t want a biopsy for obvious reasons unless absolutely necessary. Is nodal swelling common after this long and I have never had before.
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.
Can you advise me if it is safe to have underarm laser treatment to reduce underarm hair on my well-controlled lymphatic-affected arm?
I cannot deem this is an intervention that is free of risk.
Is anyone performing LVA surgery on neck lymphatics to improve the abnormal accumulation of Aβ-amyloid protein and abnormal phosphorylation of tau protein in the brain, which are two important causes of Alzheimer's disease. See https://gpsych.bmj.com/content/37/3/e101641
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.
Greetings, What are the best treatment options for Lymphedema in the geriatric populations? Any recommendations for home bound and very ill elderly in assisted living facilities? I live in a remote area with limited resources. On Medicare Advantage. Thank you!
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.
I have been experiencing a headache for over 3 years since covid vaccine, it feels vascular but neurology can’t find cause. It radiates to my eye and occipital area as well as down my neck, I also have painful spleen and sone strange skin patches. Wondering if lymphatic system related
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.
One of my upper arm lymphoedema patients that suffer from recurrent cellulitis will undergo LVA soon, she is on low dose antibiotics. The surgeon will prescribe a course of antibiotics for the surgery, shall she stop taking low dose after LVA?
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
I have advance lipedermatoscleosis on my leg and swelling (champagne bottle). I am having difficulty finding anyone that can help I need a TKR and surgeon is wary to do it until my leg improves
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.
Can I ask if it will be possible if phase 3 can be skipped if phase 2 successful? Also will we get a webinar update on progress like you gave last year which was great? It is great to get hope.
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.
Hello I had surgery for a root tear in my meniscus last September, and developed lymphedema due to May Thurner syndrome. I was recently told that I will probably have to have a total knee replacement in the same leg with lymphedema. How does that work with lymphedema?
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.
Dear Stanley As captopril is an LTA4H inhibitor, can it be of any use for Lymphodema? Have you heard of any research on this? Thanks so much
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.
Is the bestatin trial over? Results? I have secondary lymphedema in my right leg and am interested in trial participation.
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.
I am recovering from breast cancer. I have lymphedema in my right arm/breast/back area. Now I’m dealing with Lymphangitis/cellulitis when I get bug bites. Is there a specialist that deals with this vs going to the ER everytime? Is it related to cancer recovery?
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.
Very interested in joining a study. Please advise. Thanks.
If you wish to participate in our studies, please contact:
Marissa Dobry
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Please describe your current problem so that we can determine if you should proceed with us.
Should lymphedema patient take calcium channel blockers for high blood pressure? Is there a class of HPB medication that is better suited to patients with lymphedema?
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.
I had 2 lymphoscintigraphy, both says that I have lymphoedema-feet to knee. However a very reputed Hôpital specialised in lymphoedema, claim I don't have lymphoedema but don'texplain how despite the exams.After ovary surgery, the swollen only occur when I sit down along with the belly. What to do?
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 did LVA Surgery on this April. It was succeeded but During the operation we find that All my left hand Lymph was Probably destroyed by Chemotherapy. Could you please give me any advice is to protect my hand to play the piano as long as possible?
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.
Hello, it looks like the majority of research and surgery is directed towards secondary lymphedema. Is there anything on the horizon for those of us with primary?
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.
Hi Dr Rockson! How common is it to develop lymphedema due to heat/sun on the face! I had small swelling in one side of my face which has now turned into swelling in the mouth, eyelids!Pressure in the head, neck, ear and difficulty swallowing 2 months now
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.
I have secondary lymphedema of the left arm due to breast cancer. I have received conflicting responses from various healthcare providers whether or not lymphedema impacts my immune system. Do you have any data/studies that address this?
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.
Hi Dr. Rockson! I have a question regarding the research you are conducting on the drug Acebilustat! If the results prove to be successful, do you think there is a high chance of finding a cure for Lymphedema for those who have it? Best regards
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.
What is your opinion of using acupuncture for treatment of lymphedema? I'd like to try but am afraid of infection. Thank you.
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.
How long will the drug research on humans take and how many people should participate. How long does it take after the research is completed to get permission from the FDA to sell the drug? I hope that we patients will not have to wait long. Best Regards Vera Jeremic,
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.
I've noticed a lot of variation in protocols for lymphoscintigraphy (tracer material and dose, injection sites, timings of scans, rest/active, etc) depending on the medical system. What are the correct (or best) protocols for a diagnostic lymphoscintigraphy to test for possible lymphedema in the legs? What protocols does Stanford use?
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.
How long from the initial contact or referral does it take to get surgical treatment or genetic targeted pharmaceutical treatment?
That is highly variable, and depends largely on insurer responses to requests and to other local scheduling issues.
I am 49, have had primary lymphedema since childhood. I have swollen lymph nodes that never show up on ultrasound or CT! Is it possible that my nodes are smaller than "normal" to begin with? I am concerned that I need a biopsy, but nobody taking me seriously.
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.
I am wondering when this feeling of walking through concrete will end. My lymph came from being obese and was in remission when a recent trip to the hospital inflamed it.
Appropriate treatment of lymphedema can have a wonderful impact on the symptoms.
Hello! I am eligible to have the lymphedema mass on my leg removed or debulked but I am having trouble locating a physician skilled in this area at a reputable hospital that will take a patient with over a 35 bmi. I am curious how to navigate thisz
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.
Dear doctor, i have primary le onset 19yo - now 40. I have a newborn and wondering weather there is a non invasive test ( fe blood test) ti check if she has general hypoplasia as well so that I can be alert/ careful to prevent or postpone le onset.
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.
Dear doctor When can we expect an update on the clinical trial? Thank you
The clinical trial is expected to be completed by the 4th quarter of 2025.
I have suspected primary lymphedema (age 34.5 onset). Chronic swelling in one leg since long flight, no swelling in foot, no known cause. Venous ultrasounds and abdominal CT are clear. Bad reaction to bandaging. What kind of specialist can diagnose me? Should I get a lymphoscintigraphy despite false negatives?
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 am wondering,I have been hearing when individuals where on the ozempic they did not get tough, fiberous skin(tissue),but when they went off of it the skin in the affected area flaired up,the skin got hard,fiberous and so forth.I was on ozempic and found that to be true also.are youhearingthatalso?
I have not heard this from my patients and this is not yet reported in the medical literature.
Is acupuncture contraindicated for lymphedema? Or is it less so as it used to be?
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.
6 months on Ketoprofen is working. Just diagnosed with colon cancer doctor thinks is early. The Yin Yang of LTB4 mediated inflammation in cancer study indicates LTB4 can be a plus? I would be advised to stop ketoprofen? Or continuing might help? Google colon cancer and LTB4, for positive excerpt.
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 Dr. Stanley Rockson's lecture on YouTube, he said a trained primary care physician should be able to diagnose lymphedema with a 15-minute physical exam, without tests/imaging. How do I find a doctor qualified to do this and confirm they're qualified? How do they diagnose it?
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.
Hello Prof. Hakan, My close relative is suffering from lymphedema in the scrotum. We believe it is now at the end of stage 2 or maybe beginning of stage 3. Do you treat lymphedema in this area of the body? If so, what would the medical procedure that you use?Thanks
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.
Hello! My child was born with swollen feet and toes. Please advise how Lymphedema could be diagnosed at this early age and if anything could be done to prevent the progress of lymphedema?
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.
Hi. I am wondering if this new drug has promise to remove lipedema nodules. It is hard to imagine anything could disolve them besides surgical removal. On a level separate from this specific medication… is it even possible for a medication to do that? Selectively remove diseased fat only?
Hi. I am wondering if this new drug has promise to remove lipedema nodules. It is hard to imagine anything could disolve them besides surgical removal. On a level separate from this specific medication… is it even possible for a medication to do that? Selectively remove diseased fat only?
Theoretically, yes, but there is no data yet to directly respond to your question.
My 37 year old son has it in both legs and also has type 1 diabetes, heart disease and gastroparesis making treatment very difficult. He has not had cancer. How can we tell what his lymphedema is caused by and does it matter? We would gladly join a research program.
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.
Recommend treatment? 10+ year history of cyclic vaginal drainage of chyle. The past six months malodorous pus has replaced chyle. MRI confirms fluid collection above vaginal cuff GYN and colorectal surgical history.
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
Diagnosed with lymphedema in left leg, lipodema in both legs, and hypothyroid. Wanting to lose weight to alleviate some of the symptoms but losing weight seems impossible so far. Would weight loss surgery or even weight loss injections work considering all the diagnosis above?
Both bariatric surgery and GLP-1 agonist drugs can theoretically be effective even in the face of your other diagnoses.
Recently diagnosed with "dilated lymphatics", Venus Insufficiency, lipedema, and large saphenous vericose vein by a vein doctor. They were unable to answer basic questions. 1. Is dilated lymphatics actually lymphedema? 2. Will fixing the vericose help/reverse the disease? 3. Does lipedema complicate things? 4. What if I also have Hidradenitis Suppuritiva and hypothyroidism. Do these affect lymphedema as well?
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.
It's my impression based on some of your presentations that you may not need to open the study to lower extremity? Will you get enough info from the arm and lipedema participants? I may qualify for liposuction soon but don't want to upset my chances for participating. I have LEfromcancer.
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.
When are the results of the HEAL trial likely to be published? (They are eagerly awaited!) Will any preliminary results be available soon? Many thanks.
We hope to be in a position to publish within the next 12-14 months.
Is it justified to perform lymphedema surgery in an 11-year-old boy or should we wait? Can lymphedema be accompanied by very high ddimers (of 5000), increased CRP and OB? How to treat edema with such high ddimers?
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.
Half of my medical team has diagnosed my swollen feet and calfs as being lymphedema and the other half has made the edema diagnosis. I am leaning towards the lymphedema team. Reasons being (1) lymphedema clinic was successful and(2)radiation/esophagectomy a year prior to onset. How can I tell the difference?
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.
Hello Dr I had mono in October of 2022, my lymph nodes were very swollen and they gave me prednisone to help with swelling. Initially it stopped. After a month my lymph nodes began to hurt again and haven’t stopped. I need help on what to do.
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.
Dear Stanley, I'm seeking advice regarding long-standing lymphedema issues post-pregnancy. Previous consultations offered limited hope, emphasizing physiotherapy as the sole treatment. I'm eager to explore potential treatments, assess severity, and discuss lifestyle modifications. Your expertise would be invaluable. Thank you
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 am pediatrician 47 yr old, diagnosed with tarda. I am not overweight annd very active. Any suggestion for leg pain? And i do yoga, does hot hot yoga ok? Thank you i really appreciate it
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.
Since patients with lymphedema aren’t able to travel bt air, would you be willing to collaborate with Georgetown University in your clinical trials? We live in the DC area of VA. My loved one would be interesting in clinical trials within driving distance.
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.
A loved one has lymphedema which was worsened due to prednisone for a rare autoimmune disease. My loved one is now on cell cept for maintenance of the autoimmune disease. Do all immunosuppressive drugs worsen lymphedema?
No, not necessarily, but they have the capacity to represent a risk factor, depending on the regimen.
Are you aware of this study at GIT: https://www.sciencedaily.com/releases/2023/03/230320143114.htm What do you think?
Nanotechnology could treat lymphedema | ScienceDaily
Yes, I am aware and collaborating with these scientists.
I heard acebilustat will be available for a lipedema trial soon. Does it have any promise for very skinny people with lipedema? Some of us are quite thin but most of our fat is lipedema tissue. Does it hold any promise for building muscle? Most of us have lost it.
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.
I had a hysterectomy (Cervical ca) with lymph node dissection and radiation in 1980. My left ankle began swelling around 1991 but the calf only the five years, and my thigh the last two. Is this normal, only one side and so long after?
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.
Am now 69 YO male was active carpenter/teacher. Now confined to wheelchair after infected artificial R knee was removed and replaced with an anti-biotic spacer. Had skin graphs SD on chins. Surgeon won't replace knee till swelling from lymphedema subsides and skin color returns to normal. Is that possible?
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.
I had ovarian cancer surgery in 2015 and53 lymph nodes were removed from many areas of my abdomen during exploritory surgery. Ive been dealing with pain, swelling, and pressure in one leg, abdomen and hip and17 fibrosis continues to advance. How can lymph possibly be moved back to the heart?
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.
My daughter was diagnosed with primary CPL posthumously after developing severe Hydrops fetalis. Could CPL be diagnosed in future pregnancies prior to any onset of effusion? Any further understanding of CPL would also be greatly appreciated with such limited information available.
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.
Cantu syndrome is a connective tissue disorder with a high incidence of lymphededema due to hyper active potassium ion channels. -from what you see about Cantu is it reasonable to assume lymphemdema in Cantu may have a different cause and more importantly therefor treatment?
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.
Following double mastectomy & radiation I have Lymphedema in both arms, left hand due to blood draw, back & chest. I am required to have blood work and infusions. No one will use my foot. What do I do?
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.
I have a very strange case of lymphedema, cancer related, the doctors are afraid to address it. I would love to consult with a knowledgeable person, just who is the question? Is a physical therapist trained in lymphedema more highly trained than an occupational therapist in regards to treating lymphedema.
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.
I understand. Is there a preclinical model of some sort of the cells indicating they might respond to ltb4? Or is there a reason to think ltb4 is implicated in lipedema tissue growing? Is there a trial starting?
There is reason to believe that lipedema will respond to LTB4 antagonism. Please watch the published literature as it evolves.
I have non-small cell lung cancer, s/p RUL lobectomy 6 years ago now with recurrence stage 4 on TKI capmatinib that causes lymphedema . I recently developed left axillary cording This seems rather unusual do I need further evaluation for other cause besides lymphedema? Recent CT chest stable small GGN
Yes, I do believe that a thorough evaluation is appropriate, in order to determine the exact cause of this problem.
Are there are any studies or theories related to a low pulse or low blood pressure exacerbating lymphedema? Are they at all related? Thanks.
They are not typically related.
My wife had a double mastectomy 20 years ago and subsequently developed lymphedema in her right arm. Her right should joint is "bone-on-bone" and extremely painful to move. What surgical options does she have?
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.
I have lymphedema in my right leg (primary) and left arm after an elective surgery. I need a total knee replacement, in unaffected leg, but surgeons can't guarantee I wont get lympedema in leg that needs knee replacement. Help!
I’m afraid I can’t add anything to that. There is a finite risk, with your history, that surgery could provoke lymphedema in your unaffected leg. You will need to weigh that risk in deciding whether to have elective surgery. I’m sorry that I can’t shed any more light on this.
Are there any preclinical studies or studies of any kind yet with ltb4 and liepdema out? How do you test it without a mouse model for lipedema? Has acebilustat been considered for vein insufficiency or anything like that?
There are no preclinical studies; as you mention, there are no laboratory models of lipedema. It has not been tested for venous insufficiency, where its mechanism of action would not be applicable.
I came down with a stomach bug and was unable to keep down food and fluid for about four days. During this time there was a drastic reduction in swelling of my affected leg. I always thought diuretics were bad for lymphedema, but might they be helpful in my case?
You don’t mention whether you were confined to bedrest during your infection. We often observe that prolonged bedrest improves lymphedema of all causes. You also don’t mention the cause of your lymphedema. Diuretics are relatively contraindicated in the obstructive forms of lymphedema, but may be helpful when venous pressures are elevated.
For someone who does not have dermal/epidermal thickening yet does acebilustat work elsewhere on the lymphatics han the skin? Or is it's main function to help those who already have that level of damage?
Our research is only beginning to answer this question, but it appears that the drug helps any region of the body in which lymphatic function is impaired (and may also help to prevent future damage if given early enough).
I have lymphedema from cancer treatment. And a prescription for Ketoprofen 75 mg 3 times daily. Amazon pharmacy has only 200 mg extended release. Dr Rockson answered my last question, saying ketoprofen can be used. How can I get 75 mg or is 200 mg extended release an acceptable option?
I cannot make a recommendation for the use of ketoprofen, since we are still investigating it. However, we have used the 200 mg formulation in some of our clinical research.
My grandma had bad lymphedema with breast cancer. I was just diagnosed with appendix cancer. Is lymphedema genetic? Can I end up with lymphedema from appendix cancer, abdominal Hipec chemo? Am I more likely to get it because she did, or because she had it so badly? (Different area?)
There are genetic factors that can be involved in the predisposition to develop lymphedema; however, your cancer should not carry substantial risk for developing lymphedema. This seems to be an unrelated problem.
Is radiation on squamous cells in a lymphatic leg effective and if s0, can the skin be healed?
If you are asking whether radiation therapy can be performed for cancer therapy, the answer is yes, but healing may be delayed in a region of the body that has lymphedema.
What is the most accurate imaging test for early stage disease: ICG, Lymphscintiagraphy or Lymphangio MRI? Would you recommend one to go to Med Ctr that does many?
The most sensitive imaging test is MRI lymphangiography. Unfortunately, this type of imaging is not wide available but, if you have access, this would be the choice and, by definition, the center would have substantial experience. Lymphoscintigraphy is the second best choice, but it can have as much as a 20% false negative rate. ICG is not useful for this aspect of diagnostic imaging.
Can primary lymphedema present in bilateral forearms and lower legs only sparing the hands and feet? My Pt is lean and fit but has pitting edema in forearms and lower legs. She reports water retention for years.
Yes, that pattern is feasible, although unusual. Lymphatic imaging may help to establish the correct diagnosis.
I finished oral cancer treatment January 2023. Cancer is gone. The radiation doctor says my lymphedema might cause more tightness. I’m low risk for ketoprofen side effects and want him to prescribe it. Is ketoprofen gaining acceptance with lymphedema doctors? Is it generally safe for 6 months use for this?
Questions of safety have to be individually answered in relationship to the patient. If you are asking whether it is an acceptable course of action to prescribe this drug, the answer is yes, but it is important to state that the evidence is based upon one pilot clinical study, and the research is ongoing.
I have been on lasix since I injured fractured my pelvis in 2019 at work which is when I began swelling in my legs and I also had pain in my groin does lasix do anything for lymph fluid?
Lasix is only appropriate for one form of lymphedema - the problem that arises when the lymphatic system is overloaded with excess fluid production within the affected parts of the body. This typically occurs as a consequence of vein disease or from cardiac or lung, kidney or liver dysfunction. If the lymphatics are damaged, as is likely the case following your trauma, Lasix is not useful for the lymphedema. However, if your doctors are using for another, associated problem, it is fine to continue to take it.
Are you aware of a correlation between lymphatic disorder and low cd4 counts? My husband has pulmonary lymphangiectasia and underwent lymphovenous bypass surgery last year to repair a lymphatic malformation. His cd4 count improved slightly after surgery and has now dropped again.
Yes, there is a direct connection between the reduced CD4 levels and the underlying lymphatic disorder.
My primary doc said her best guess is I have lymphedema. I need to make sure I'm getting correct treatment; it is questionable of what is wrong. Is there a doctor in the Denver, CO area that has a lot of experience or what kind of doc should I couldgoto?
Please consult this page devoted to LE&RN;‘s Centers of Excellence. The University of Colorado is designated as a Center where you can get the appropriate diagnosis:
Recently have severe continual drainage under the skin from my scalp, down to forehead, cheeks, upper eyelids, and neck. Have seen doctors but it isn’t familiar to them so I can’t find help.
Unfortunately, what you describe is not specific enough for me to comment. This would, however, be an unusual presentation of lymphedema. I suggest a formal consultation with a dermatologist, preferably someone who has expertise in conditions of the scalp.
How might the inhibition of enzyme 5-LO improve skin inflammation?
It would be very indirect and not specifically targeted to a nonspecific cause of skin inflammation.
What is the benefit of mast cell stabilization for individuals with mast cell activation disorders (idiopathic angioedema and hives) with regard to LTB4?
This is unrelated
My son has been diagnosed with Crohns and has had what was thought yo be idiopathic scrotal lymphedema for the past five years - understand there's an association based on one of your lectures. Big swelling and pain flare after 1st dose of Humira: related?
Dr. Rockson’s Answer:
There is certainly a potential relationship, but deciding if this is the case would require a full evaluation.
As known currently nsaids would not interfere with a persons ability to take acebilusat? How is the mechanism of epidermal thinning thought to work to thin the skin of lymhphedema patients? I see ltb4 is implicated in excess collagen deposition and inflammation so thought it may also thin skin overall.
The action of LTB4 antagonism is very targeted to specific biological processes, so it would be incorrect to generalize its effects in lymphedema to other, unrelated biological processes that share some common attributes
What sets Acebilustat apart from an nsaid? Does it potentionally have the same risks of thinning the skin like nsaids do over prolonged use?
It has nothing in common with NSAIDs. One NSAID - ketoprofen - has a mechanism of action that overlaps that of Acebilustat, but Acebilustat is much more targeted to end result than ketoprofen. Acebilustat does not share any side effect potential with the NSAIDs because it has an entirely different mechanism of action.
I’m 10 weeks postpartum and would love to know more about hormones and breastfeeding, how they affect my primary le in left leg - swelling was worse after birth than before and hasn’t reduced. How long will it take to return to baseline measurement?
It is likely, given what you describe, that if your lymphedema changes return to their baseline, it will require the end of breastfeeding and return to non-pregnancy hormone status.
I have primary lymphedema. Am 91. Severe knee arthritis. Is it safe to get a genicular nerve block? My legs and thighs are swollen with lymphedema. Seeing pain mgt doctor tomorrow. Thank you.
Yes, there is no contraindication in the setting of lymphedema. I cannot guarantee that any intervention will be free of adverse effects, but there is no relative contraindication.
Is there any "hard" (double blind controlled studies) evidence, aside from patients with extreme BMI, that diet plays a clear role in Lymphedema ?
No there is no dietary modification that either increases lymphedema risk or helps it to recede, However, it is important to state that high sodium diets, which promote generalized edema, will have a proportional effect on the part of the body that has lymphedema.
I completed beam/seed implant radiation for prostate cancer in 2004. i was declared cured in 2012. I noticed my 1st signs of Lymphodema (modearate ankle and foot swelling) in 2018. Does the wide time gap between these events rule out the PC radiation as a possible cause ?
No, it is still the most likely cause. This is not a common pattern, since 95% of cases will appear within the first two years, but there is no time point beyond that at which lymphedema risk disappears. I’ve certainly seen cases that appear more than 20 years after cancer treatment.
I have lymphedema in my right arm, result of breast cancer. I was wondering if there has been any studies regarding having tattoos on an arm with lymphedema. I asked MGH, they said there was not much research, so it was up to me. Thank you, Beth Bennett
I would consider the lymphedema to be an absolute contraindication for tattooing in the affected arm.
Taking it for another condition and was surprised to see its been tested on on mice models for lymphedema: why might a drug like this even be considered for testing lymphedema? https://www.liebertpub.com/doi/abs/10.1089/lrb.2022.0071?download=true&journalCode=lrb
Hypoxia inducible factors have been implicated in the mechanisms of lymphedema development.
Thank you. Are there any studies on ltb4 and lipedema? My friend and I would like to read them if possible. Are lipedema fat cells extra cells (as well as being enlarged) or regular fat cells that were there. Does acebilustat eliminate fat cells in lymohedema that were already there?
There are no studies that have been performed to date.
Is acebilustat thought to only act on one specific type of inflammation? for example would it inhibit the inflammatory process involved in wound healing potentially? or is it acing on one specific type of inflammation only? Do you believe it might eliminate extra lipedema fat cells or only decrease them?
Acebilustat has an effect on any form of inflammation in which the overactivation of this specific pathway can be incurred. We do believe that this treatment pathway has promise in lipedema, where it certainly could decrease or even eliminate the cellular overgrowth patterns of the disease.
I've seen many references to a ketogenic diet for lipedema. Has there been research into whether a whole food plant based diet is helpful?
There is no research related to this question, although a whole food, plant based diet is considered to be very supportive of good health.
My left side doesn't sweat nearly as my right side.. Right side is able to sweat normally but left side doesn't hand and leg both .. Swelling is prest on left.. Is there any connection with lymphedema with me unable to sweat on one side??
Yes, undoubtedly there is a relationship, likely based upon alterations in blood flow to the skin of the affected regions, but this may also relate to the specific cause of your lymphedema.
Is it possible for a physician to apply for expanded use for an individual patient if they are unable to use compression or other therapies and have a condition that makes this very dangerous?
No, this is a single center study (Stanford University) under the auspices of the FDA and must be undertaken with full surveillance here.
Will the results of the upper extremity trial be applicable to the lower extremities?
Yes, it is our goal to ultimately use this form of drug therapy for all forms of lymphedema.
Do you foresee acebilistat being a short course of treatment for lipedema like it is for lymphedema? Or an ongoing medication? do you think it has the potential to entirely halt new fat proliferation allowing the user to live a normal life and eat normally again? Or only supplementally improve.
Yes, i do foresee this at Stanford in the new future. We cannot predict all of the responses to treatment until we observe them.
Does MRI need contrast to diagnose abdominal lymphedema? Which other methods (non-invasive, no contrast) exist for this diagnosis? Thank you very much.
Yes, contrast is required. There are no other reliable methods for imaging diagnosis.
Does MRI need contrast to diagnose abdominal lymphedema? Which other methods (non-invasive, no contrast) exist for this diagnosis? Thank you very much.
There are no non-contrast imaging modalities to diagnosis lymphatic disease. Some of the bodily changes of lymphedema (fat deposition, tissue water accumulation) can be detected by CT, MRI, or ultrasound, but these findings are relatively non-specific and will not definitively establish a diagnosis.
For Rockson- I saw recently that acebilistat will later be trialed for lipidema. Is it thought it could help with pain only or is it hypothesized it could halt lipedema entirely?
We are still very much in an investigational phase, but acebilustat is not a pain medication. It has the potential to significantly reverse the pathology of lipedema, much like its impact in lymphedema.
Hini will have to be on antidepressants for the rest of my life I'll start having them from the following week. My question is can anti depressants worsen lymphedema??
No, there is no evidence that these drugs influence lymphedema in any way.
Good afternoon. Can a person develop lower extremity lymphedema from a knee replacement? I have secondary right arm/hand lymphedema. Thank you. Diane
Lymphedema of the lower leg can uncommonly occur after a total knee replacement (in the same leg as the prosthetic joint), but it is not possible to relate arm lymphedema to surgery in the leg.
I have 35 pounds of lymph swelling all over my body from a liposuction surgery 4 years ago. I have done CDT on my entire body for over a year and the swelling keeps returning even during CDT. Please help me as I am terrible pain! Thank you.
I would love to help you, but this is not a forum for delivering medical care. I will respond by telling you that CDT is an approach that can reduce the impact of lymphedema, but does not cure it. It transitions into maintenance mode so that the treatment effect can be sustained.
I recommend that you seek specialty care to determine if the diagnosis is correct and to see if anything else can be done.
Hello doctor I am the resident of Nepal. I have my male baby born in april 2023 .My baby has thicken bluish on the upper part of feet. I am confused it might be lymphedema.Is there any treatment for this primary lymphedema ?
If you are describing a color change, this is not likely to be congenital lymphedema. I can’t tell you what this is likely to be without an examination, which would be true for any physician. I recommend that you have your infant son examined by a pediatrician or other specialist.
At CDN pain clinic received injection for chronic pain in arthritic hip with tendonopathy.Scarred fascia on U/S. Same hip/leg also has 15 yr cancer related LE after node basin removal.Received dextrose sol'n instead of steroid. Is 15 yr LE hx the reason for scarring? Is prolotherapy OK in LE region?
You don’t mention whether you had radiation therapy for the cancer, which would be the most logical explanation for both lymphedema and hip changes in the same limb.
Prolotherapy is not contraindicated in lymphedema, but it carries small risks, including infection and possible worsening of the lymphedema. The risks and potential benefits have to be weighed in each circumstances to decide if this is a reasonable medical intervention.
I have swelling all throughout my body but especially in my face, neck, arms, legs and abdomen. It is about the 10-15 pounds worth of fluid. What kind of doctor would be the best to treat this? I have small fiber neuropathy but numerology feels it is not neurologic.
A general internist should be able to begin the diagnostic evaluation and then refer you to whichever subspecialist seems appropriate. Cardiology and Nephrology are two subspecialties that would also be appropriate for initial evaluation of generalized edema.
Hi, I tried to find info but I could not. I want to know how many MRI (or other imaging modalities) imaging cases are per year. It is ok just for one large center, but I am curious if the numbers increase or not. Best, Sk
I’m sorry, I don’t beilieve that data like this are tabulated in an official manner. Each institution would be able to estimate the numbers of each type of imaging procedure that is billed, but these numbers are not published.
Thanks for your question.
I am a fraternal twin without. Lymphedema but my twin sister has it and has always had heavy, swelling legs and after cancer treatment heavy arms. Is this purely genetic? At 75 we are traveling to Europe from the US this Fall. What precautions and consideration should we make?
Lymphedema has genetic predisposing factors, depending on the type of lymphedema. A family history should be noted but does not confer excessive concern or precautions. Fraternal twins are more like non-twin siblings than they are genetically like identical twins.
Dear I have seen the presentation a while ago about the new trial - an anti-inflammatory oral drug called lyt-100 that could benefit le patients. I was wondering when we could expect new updates. Thank you very much!
I am not involved directly in this trial that is underway. The principle behind the drug is that it has both antiinflammatory and antifibrotic potential.
Hi does having junk food and fast food and oily food aggrevate or in other words speed up lymphatic overload thereby causing more swelling in the affected lymphedema leg or arm ?? Like milkshakes, carbs , ice creams , lot of cheese , chicken and pizzas ..
There is a relationship to dietary patterns, although indirect. The body’s requirement to produce lymph is driven primarily by the need to absorb fat from the diet. Therefore, in anyone who has, or is prone to develop, lymphedema the demand on the lymphedematous part of the body may worsen the performance and increase the edema. In addition, the kind of diet that you allude to is one that would promote obesity, which also has a negative impact on lymphatic function.
Does anyone know if intravenous lipoleiomyomatosis is linked to lipoedema? I am intrigued & have both. Any thoughts?
Lipoleiomyomatosis and lipedema are two distinct medical conditions that involve the growth of fat cells, but they are not directly related to each other. The only theoretical relationship beyond their involvement in fat storage cells is the fact that both conditions are influenced by hormonal status.
I have cellulitis in arm with lymphedema. Arm is too swollen to fit in sleeve. I have compression machine but no one can tell me if I should use it or wait for cellulitis to clear. I worry that lymphedema is ignored or will get worse.
There is no harm in omitting compression for the treatment of lymphedema. Any ground that is lost can be regained. There is no official guideline concerning the resumption of compression in the setting of cellulitis. I cannot advise you for your specific situation without a clinical evaluation. In my patients, I often consider compression to be safe after at least 1 week of antibiotics for the cellulitis, and certainly would wait for fever or any other systemic signs to be alleviated. Please talk to your doctor about the recommendations for you.
I am 29, very low bmi and took dutasteride for hairloss which triggered lipedema and lymphedema simultaneously. This is clearly a rare case and I have done enough research to see there are very few people who will treat the lipedema in this scenario. Have you?
The important issue is not the immediate scenario, rather, hormonal changes as a stimulus for these problems, which I have seen rather commonly.
I believe I have read that radiation can cause lymphatic damage and thus lymphedema. Is that correct?
That is correct. Therapeutic radiation to areas of the body that harbor lymph nodes (typical for many cancers) can cause lymphedema at rates of 20-50%, depending on the type of cancer and the body location.
Is it dangerous to get a steroid shot in your elbow for tendinitis in the same arm that I have lymphedema ? I do go to therapy but because of the tendinitis my therapist can not get my lymphedema to go down. My orthopedic surgeon suggested a steroid shot. HELP
Thank you for asking. ‘Dangerous’ is the wrong word. For any treatment in medicine, there are risks and benefits. A steroid injection will likely help the tendinitis symptoms (benefit), but there is a small risk associated with injections into a lymphedema arm. Physical therapy for the tendinitis has less benefit and no identified risk (unless the therapy is very rough and creates physical trauma). Only you can decide whether the tendinitis is severe enough for you to accept the small associated risk for your lymphedema.
I was just diagnosed with mild lymphedema tarda. The lymphoscintigraphy report states "mildly reduced passage and mild progressive dermal backflow" feet foot only. Will this get progressively worse or could this be an isolated incident. The swelling is very minimal in the foot.
It is not possible to answer your question accurately. More clinical data is necessary to answer your question, since the diagnosis of lymphedema tarda would require additional normal findings to exclude lymphatic overload as a cause for this finding. In general, however, lymphedema does have a tendency to progress with time, particularly without aggressive treatment.
Hello I have had lymphedema every since 1992, long time. Do you know of any connections between lymphedema and herbicides? I know several others with lymphedema, we walk together and that conversation always come up.
There are no known connections, but this is a valid question to should be answered with future research, to be potentially identified as a causal or contributory factor.
Hello! My 5 yo son has heterotaxy syndrome (he has functional heart defects) and has chylous ascites, protein losing enteropathy, hypoalbumenia. His doctors have assumed that he has primary intestinal lymphangectasia, but two endoscopy/colonoscopies showed no evidence. Would it be worth getting a second opinion? Where is the best place?
In this case, the protein-losing enteropathy is more likely based on the functional heart defects. If you can find a facility that does magnetic resonance lymphangiography, it could be useful to confirm the fact that there are no identifiable lymphatic defects.
Hi everyone, I'm 57 years old and had a breast cancer surgery in last July. It's been a month where I was diagnosed with lymphedema (left arm) stage 2 Is it possible for me to participate in any drug therapy research from Greece where I live? Should I take selenium supplements?
Thank you for writing to us. Unfortunately, it is not possible to participate in clinical therapy research at a distance. Selenium supplements will do no harm, but there is no evidence that they will be helpful in this situation.
Can Medial malleolar bursitis worsen lymphedema?? Or cause the onset of lymphedema for ppl who do not have lymphedema.. as of now only the medial ankle bone is swollen
If the lymphatic system is not impaired then bursitis should not have the capacity to create lymphedema. If there is pre-existing lymphatic impairment, the inflammation from bursitis can overtax the lymphatics and temporarily worsen the preexisting lymphedema.
Recent papers suggest having lymphedema can affect immune function; specifically compromising the acquisition of adaptive immune responses and antibody production. A paper addressing this question: Frontiers in Immunology, 2019, https://doi.org/10.3389/fimmu.2019.00076 Based on this: Should lymphedema patients receive monoclonal antibodies, eg, Evusheld, as prophelactic for COVID? Thank you
There is insufficient evidence to support this approach. This and questions like it, should be aggressively investigated.
Damaged fascia develops into nodules. I am not referring to muscle knots that is relieved by dry needling. Gummy sticky fascia is the lipedema nodules? Any thoughts or any feedback? The damaged fascia impedes blood flow so it transitions into lymphedema. I speak from personal experience and success that I am having with my treatment plan. I would appreciate any feedback and happy to share anything for research. I see fascia is mentioned in many articles with lymphedema/lipedema. But nothing seems to connect the damaged fascia to possibly being the nodules in lipedema. I was diagnosed with lipedema and lymphedema. I am breaking up the damaged fascia and seeing a huge difference in my body. I am not sure this is relevant but again any feedback would be great.
Fascia holds memories, emotions, and trauma. Lipedema develops nodules which is the damaged fascia? Thoughts? Damage leads to decreased circulation and lymph. This starves the muscles, joints, etc. Eventually leads to lymphedema. Trauma to the fascia during surgery end result dev. Lymphedema. The damaged fascia is gummy.
Your questions are provocative, but difficult to answer. We don’t have access to much histopathological analysis in lipedema, so there is no formal response that I can give. It is the case that lipedema is a loose connective tissue disease which might be considered to encompass the fascia.
Does Red Light Therapy or Near Infra-Red light helps in the treatment of Lymphodema? What about another treatments such as cavitation, hifu, or radio frequency?
None of these treatments have any objective documentation of benefit in lymphedema. If an intervention increases blood flow to the edema limb, it has the potential to worsen, rather than alleviate, the lymphedema
Earlier this year I suddenly had a worsening of under control edema and lymphorrhea on my left leg. My right leg suddenly started leaking for the first time too. I'm losing over 16oz of exudate a day. What happened, are there other things to worry about losing that much?
I wish I could give you a specific answer, but that would require knowledge of test results, imaging, and medical history. I do believe that this turn for the worse should prompt a re-evaluation, including imaging. The biggest problem with lymphorrhea is hygiene and personal comfort. It is not dangerous in itself.
I have had lymphedema for 9 years following a stage 4 pelvic cancer & stage 3 colon cancer surgery. Beat the cancer. Last month, in a repeat scan the left kidney was swollen. A stent was put in due to damage from radiation. Will leg keep weight off? Still lymphedema?
I would need more specific information about the nature of the stenting procedure, but if it improved kidney function, there may be some lasting benefit for the lymphedema. The alternate explanation might reside in the duration of bed rest following the procedure. It is extremely common for chronic lymphedema to substantially improve (temporarily) after prolonged bed rest.
It seems there can be a number of different reasons or causes related to lymphedema. How does one determine the cause? Is there a specialist who can lead the way on this effort?
In many cases, it is possible to determine the cause of lymphedema or the factors that precipitate its appearance. A full clinical evaluation requires consultation with a vascular specialist knowledgeable in lymphatic diseases. Depending on your location, such physicians can represent a variety of subspecialty designations. Perhaps you can consult the LE&RN; Center of Excellence page to determine the closest C0E to your home.
How common is angiosarcoma for someone with lymphedema? Extremely rare and not to even bother worrying about it is what my therapist said. Is this true? I have lymphedema in my arm, caused from -no one knows. No cancer, no surgeries or known injuries to cause it, please advise
Your therapist is correct. Angiosarcoma is a late and very rare complication of chronic lymphedema. Most lymphedema specialists have never seen a single case.
Can you please tell me some foods to avoid for someone who has chronic leg lymphedema? Thank you.
There are no ‘avoid’ foods for lymphedema.
1. In a breast ca survivor s/p LND, is there a risk of lymphedema after skin-reducing surgery after weight loss?
yes, if it is performed in the region of the body that corresponds to the lymph node dissection.
I have, despite regular Manual Lymphatic Drainage sessions, lymph fluid build up. I have recently been told I have a new issue: psoriasis. Can lymph fluid build up cause other problems to crop up in our bodies, because we are not clearing toxins the way that we need to?
It is a misconception that impaired lymphatic function promotes toxin buildup. However, there may be a connection between your lymphedema and psoriasis, both because lymphedema specifically affects the skin and because the lymphatic system contributes to the body’s immune response.
Lymphedema appeared all of us the sudden (no cause found), at the age of 51, Female 53 now, no previous family history related. Healthy, only migraines, I was taking EMGALITY injection (1 monthly), I would like to know if in your opinion the injection could have damaged the system? Thanks
Emgality is a relatively new medication. To date, there has been no association with lymphedema, but overall clinical experience with the drug is still relatively modest. The drug is an antibody, so the altered immune interactions that occur with its use might have an indirect impact of lymphatic function. If lymphedema occurred in a region of the body adjacent to injection, it’s possible that the injection induced a trauma that allowed lymphedema to develop. All of this is unlikely.
What tests need to be done? Can you give some direction on the particulars?
There are 12 genes that have been identified to harbor mutations that cause lymphedema. Finding a causal mutation confirms the diagnosis, but a negative test does not exclude primary lymphedema. Your physician can order whole exome sequencing for this gene panel.
I have been pumping for 6 months and fluid keeps accumulating in my abdomen. What are the next steps?
This is not a simple question without more clinical evaluation. It is possible that the device or the settings that use should be adjusted. It is also possible that pneumatic compression is not appropriate for your problem and further clinical evaluation may be needed to fully understand the mechanisms.
I have mild to moderate lymphedema affecting both arms, my chest and back. The only option the VA offered for vein access is a port, but I wear a compression camisole and use a pump unit. We're at an impasse. Every needle stick results in a flare. Options?
The only other option is to utilize a vein in the foot for phlebotomies.
Is there a link between intestinal lymphangiectasia and autoimmune pancreatitis or autoimmune gastric?
No, not defined as such, although there may certainly be a link that we don’t yet understand.
A loved one was put on doxycycline for a different health issue. The lymphedema swelling has greatly reduced, even though the patient has been sedentary. Is there a medical explanation for the significant positive effect of the doxycycline on the lymphedema?
Doxycycline is an antibiotic that has the ability to modulate the immune responses to infection. These same responses may contribute to the evolution of lymphedema, so there is a theoretical reason to be interested in this. Doxycycline is used for the lymphedema of filariasis (for other reasons). There has been little study of doxycycline in non-filariatic lymphedema; it seems to improve quality of life, but there has been no objective improvement in the lymphedema itself.
Hello, My son asked for a lab recommendation for foxy2 LDS testing. I contacted Prevention Genetics, but there are many terms on there that I don't understand. Do I need to go through a genetic counselor to determine the testing needed? I also have severe CVI, deep and superficial.
The gene is called FOXC2. You can request a DNA sequencing for that gene alone on the Prevention Genetics website, but your physician will need to complete the form and send you to a laboratory for the blood sample acquisition.
I am a 65 year old female with primary Lymphedema and Lipedema in Left leg. Orthopedic Doc said knee very compromised; needs replacement;24/7 pain. Instead, I'm considering Stem Cell/Platelet Regenerative Therapy from amniotic fluid/umbilical cords. Would this be preferred TX? Any issues to be aware of?
The biggest concern is that this may not be an effective solution for your knee. The prospective studies of this approach are few and not very convincing. Knee replacement surgery in lymphedema is challenging, but it can be accomplished with excellent results. There are risks, but most problems can be avoided or managed. It would be best to discuss your options with the surgeon.
I probably got LE from abdominal surgeries (other too,) and pain pump implant surgery. My LE started 2019, from waist down. Rt worse. However, presents differently. I was huge, then it went down 40-50 % Then up and down, up; never back as large. Normal after 3 years?
Staging of lymphedema requires more information than you have provided. Up-and-down is definitely not characteristic of lymphedema and suggests that there might be a different diagnosis to explain your symptoms.
My legs are affected with lympademia. My right knee is very painful to walk. i need an injection for the pain. I had one seven months ago. Can that be alright to get an injection?
Yes, this happens quite routinely in lymphedema patients. We always try to weigh risk and benefit. In this case the risk is extremely small and I presume that there is significant anticipated benefit.
I have primary lymphedema and CVI. I have distichiasis but would like genetic testing to verify that a FOXC2 mutation is the culprit. Would you recommend a full lymphedema panel? https://www.preventiongenetics.com/testInfo?val=Lymphedema-Panel Thank you!
If you want a complete approach to your problem, the full panel would be helpful. If you want to interrogate just lymphedema distichiasis syndrome, FOXC2 alone would be sufficient. The decision rides specifically on out-of-pocket expense to you.
Hi Dr. Rockson, I've had a lymphorrhea wound for 6 years now. It wraps 3/4 around my lower leg. I've read how sugar/betadine can heal other types of wounds but does it work on lymphorrhea wounds? Other treatments have failed long term. What's your opinion on the treatment?
This is a very unorthodox way to treat any wound. I can’t recommend it. The best course of action with a wound/lymphorrhea would be an integrated approach with wound care and aggressive compression concurrently
Is there any known connection between Sarcoidosis and lymphedema?
None directly known, although it is very likely that sarcoidosis will affect the function of the lung and pleura lymphatics
I read to avoid water temps of above 102F. If I set my hot tub b/w 99-100, would it be safe to use? Obviously being cautious to not soak my arm the entire time?
Yes these are very acceptable temperatures. As a point of reference, sauna use has been identified to increase lymphedema risk, but hot tubs have not.
I live in coastal Alabama, where the heat/humidity wreak havoc on my arm. If money was no object, would a move to a state with higher altitude or a state with a hot/drier climate help to offset my problems? What would be the priority? Ideal locations in US?
In general humidity, while it changes the way we perceive heat, is not the problem in lymphedema. Blood flow to the skin is increased as temperatures rise, so hotter climates will increase the amount of edema. HIgh altitude is not necessarily desirable.