I developed lymphedema in one arm; a year later in the other arm. Three months after that, it's in both legs (per scintigraphy) with abdominal swelling. Multiple blood tests and scans by hematologist with no cause identified. Lupus panel negative. Where else to turn for treatment information and care?

Hello: I am currently considering lip suction to remove the fat/adipose tissue in my right leg. The diameter of my lymphedema leg is about 5 cm larger than my left leg. My question is: What are the procedures post surgery? Is there risk of my lymphedema getting worse?

I have lymphaedema in both of my legs since approximately age 4 due to Noonan'S Syndrome. I (As of March 2024) was diagnosed with severe venous insufficiency in both of my legs. I am on physical therapy but the progress is slow. How long does the recovery time take?

I Had breast cancer in 2018 I had a lumpectomy ,4 lymph nodes removed under my left arm , 30 radiation treatments. Can you have lymphedema in your leg,arm & breast all at the same time? Everything swollen on my left side , breast tender, pain. what doc to see?

Is there any research/truth to the effectiveness of this product? Have any of you seen proof that this would help the lymph system? Here is more info: https://www.walmart.com/ip/Totaria-Liposomal-Lymphatic-Drainage-Drops-11-in-1-Organic-Formula-Supports-Lymphatic-Health-Immune-Detox-Vegan-Raspberry-Flavor-2-FL-OZ/16505759988?wmlspartner=wlpa&selectedSellerId=102659572&selectedOfferId=CB285B1B799132BF9D95F64E7FA67077&conditionGroupCode=1&wmlspartner=wlpa&cn=FY25-ENTP-PMAX_cnv_dps_dsn_dis_ad_entp_e_n&gclsrc=aw.ds&adid=2222222229716505759988_102659572_0000000000_21407473164&wl0=&wl1=x&wl2=c&wl3=&wl4=&wl5=9033389&wl6=&wl7=&wl8=&wl9=pla&wl10=5518726512&wl11=online&wl12=16505759988_102659572&veh=sem&gad_source=1&gad_campaignid=21690411341&gbraid=0AAAAADmfBIpmvqoeGsa2PkRF23oCVwsXi&gclid=CjwKCAjw6NrBBhB6EiwAvnT_rueJzjS0XmpzBQsiXrs7yhR8CWDehKDhDUcI_We1fo9tnbFlj8HdsBoCMKEQAvD_BwE

Assuming the HEAL trial progresses to phase 3, will the criteria to participate remain the same? I have lymphedema in both legs, caused by cancer treatment, so I didn't qualify for phase 2, but I'd love to participate, if possible. Thanks so much for doing this research!

My husband suffers from edema & leg ulcers. He wears compression socks & takes water pills. I'm looking for a better treatment. Is there one?

Dear Stanley, just wondered if there is any update on the trial and if it is progressing well? Really hoping the medication will come to market soon and give us all something to look forward to.

Is there a connection between lymphedema and the autoimmune disease ulcerative colitis and/or Entyvio biologic used to treat UC? I feel like my lymphedema showed up when my UC came out of remission and I stared Entyvio infusions.

Have the recent government actions to freeze health research funding had or are they expected to have any impact on the Acebilustat Lymphedema trial you are conducting, Dr. Rockson? I am extremely concerned about the future of medical research in general, and selfishly worried about your study specifically. Thank you.

Please share your thoughts on air travel. I have Stage II secondary lymphedema in one leg and have found travel by air challenging. My leg expands and aches substantially even when wearing compression. Your recommendations would be greatly appreciated.

looking for more information on radiation and manual lymphatic drainage safety and when to begin. Tx during the proliferation stage is important to improve lymphatics and decrease inflammation however, rad. oncologists are hesitant to refer during radiation and prefer weeks to months after radiation. Any articles or research you recommend?

My mother has lymphodema in her leg and now it hurts to walk on it. Her foot turns in like if she walks she could collapse on it. She has had it looked at and they have said itis nerve damage but it seems like it is something else.?

I'm a 54yo male who lives in MI, I'm hoping to find a specialist who has experience and knowledge of Lymphangiectasia(dx 2024) and possibly Lymphomatoid Papulosis(dx 2017). I have other medical issues and curious to know if any correlation. I'm willing to do virtual visits or if needed to travel.

Does lymphedema have any impact on the immune system?

My mom has been dealing with swelling from the torso down for three months. The source according to her doctor is because of a cancer reoccurance but she is bed ridden and in the hospital so getting up is a problem she has. What are exercises that help?

I had a lipoma removed, with it came 4 axillary lymph nodes. I am 2 months from surgery with no lymphedema, but would like to start trying to conceive. Would a pregnancy this soon increase my risk of lymphedema? Should I wait longer? I could not find any data myself.

I developed lymphedema in my left arm about 6 months ago. Since I started wearing a compression sleeve, it feels like I am experiencing tendonitis above and below my elbow. I think the night sleeve affects this most. Is this common? Anything I can do differently at night for stabilization?

I have lymphedema of the left leg which is being managed with compression, exercise and koya pump. Neither the pump nor the compression stockings reach the upper thigh and my leg there is increasingly misshapen. I buy the longest stockings and xl pump but these do not address that area.Ideas?

I need knee replacement in my left knee soon but with the lipedema, it really scares me! Is it safe? I have so much swelling above the kneecap and along the interior of the knee and have had for 10 years! Please advise asap!

I stopped all treatment due to low abdominal pain for hours caused by lightest MLD/ bandaging/compression after 1 y of daily LEs pump, daily and nightly compression w no pain. All possible GI and vascular tests r negative. With no treatment leg is huge, shiny, pink getting worse. whattodo?

1) do mechanical pump garments work for lower legs, like the " Active compression treatment device"? 2) when they do manual lymphodema message do you wear compression capris or any other garments.

Wrap therapy done twice, reduced size of legs but the custom made compressions both times were impossible for me to put on . Legs became worse. Now i have velcro wraps but they keep loosening up the moment i move. what do i do? I also wear compression capris.

What to do with B/L LEs that are getting worse since I had to stop lymphedema pump, MLD (done to LE's only), compression due to unbearable abdominal pain that they all cause. what to do that will not force fluid from LEs towards abdomen causing pain?

Is there an ACTUAL imaging procedure that can locate the area, of the lymphatic system that is damaged, and is there an age limit for something like this? If so, where?

I thought I was going for a diagnosis of lipedema but after 2 types of ultrasounds I was diagnosed with lymphedema. Saw another specialist who sent me for lymphoscintigraphy and the results were negative. I still have swelling on right side of body. What are your thoughts? Thanks!

Is it safe to use hydrochlorothiazide 25 mg when one has lymphedema in left arm/under arm? I take this water pill with losartan potassium 50 mg for high blood pressure. Thanks very much.

Hello: I am looking for a suggestion for a Roller for my Lipedema/Lymphedema in my lower leg to hopefully break up the swelling. Thank you in advance, Ellen

My mother in law suffers from Lipedema as well as a number of issues that make her unable to walk (herniated disc, torn meniscus… and other things). Is there treatment besides lipo that could help her since she can’t walk? She’s tried keto and compression but is hasn’t don’t much

Good Morning, I recently had the debulking surgery in Boston. My surgeon is following your compression regiment very carefully. My question is what is the purpose of the waist high garment? Have you ever made any exceptions? I find it very restricting and uncomfortable. Thank you.

I had a recent SAPL that was supposed to be completed with an LVA however when my surgeon completed the lymphoscintogaphy while in OR he said I did not have sufficient veins. Is this common? I had preop testing and this was never mentioned as problematic even with venous insufficiency.

Do people with PL get post-viral symptoms - aching in joints, increasing pain in lymph nodes which results in fatigue, etc. every 2-3 years and lasting 3 to 4 months? My PL appeared at age 42. I am active & fit, but have had PVS since I was a child.

A cellulitis infection last year turned to sepsis and I haven't been able to walk since. I do all the PT exercises and movements with ease, but don't have the strength to stand on my own. What can I do to make PT more effective? I need to walk again.

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?

What's the best form of lipo for lipodema?

Am 70 yrs old & has lymphedema in my leg as a result of abdominal surgery. I have had it for about 15 yrs. My leg has increased slightly over time. I went to a new dr who is discussing lymphovenous bypass. Is this sucessful? Do the results last?

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.

I have been using the medi grade wrap for the lower part of leg. Since my knee is affected would I be best with a full leg medi grade wrap. I thought maybe this stops all the pressure coming to my knee.

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?

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.

Can you advise me if it is safe to have underarm laser treatment to reduce underarm hair on my well-controlled lymphatic-affected arm?

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

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!

I saw my PT dr for swelling and pain in my arm. Bioimpedence measurement increased from 2.1 to 17.5, and my right arm is 20% bigger than my unaffected arm. They won't start any treatment until I see lymphedema specialist. Is waiting 2 weeks too long to go without intervention?

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

I was diagnosed with lymphedema in October 2023,after external beam radiation for prostate cancer.I have used compression socks or wraps ever since. Also had lymphatic massages for 10 months.Swelling is essentially gone.Can I ever stop using compression garments?

 I also have used a lymphatic pump for 4 months.

We all know that lymphatic drainage is from distal to proximal. LVB in dorsal forearm treating lymphedema of localized inner upper arm sounds like building a highway in Florida to solve the traffic jam in New York. Is it going to be effective ? What is the the theory behind?

Will you recommend to undergo intensive treatment before LVA surgery? What type of compression you recommend after LVA if the patient has already moderate lymphoedema? How often would you recommed to follow up the patient after LVA?

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?

What are the steps to take to determine if there are surgery options to help with lymphedema in lower extremities (bilateral)? Major issue is hardened fibrotic tissue in feet. And how does one find the hospitals that do such surgery.

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

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.

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?

Is there an upper age limit for performing bypass surgery. I have been living with left arm lymphedema (as result of breast cancer surgery) for over 30 years. I control it with compression 24/7. I am 79 years old. Thank you for your reply.

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

Is the bestatin trial over? Results? I have secondary lymphedema in my right leg and am interested in trial participation.

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?

What is the estimated cost of liposuction for a full leg?

Very interested in joining a study. Please advise. Thanks.

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?

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?

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?

Hello, What type of surgery will help those with primary lymphedema? Right now I’m stage 1 in my right calf and believe I also have it in my right arm and head and face. I feel like I’m a hopeless case and my only choice is to progress.

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?

I have no pain and little swelling. None, or the other day it was a half percent bigger than the other arm. Wearing a sleeve all day long seems like a lot. I've been wearing it before, during, and after exercise, about 5 hours per day. Is this enough? Thanks.

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

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?

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

What is your opinion of using acupuncture for treatment of lymphedema? I'd like to try but am afraid of infection. Thank you.

Is it possible to develop lymphedema of the neck (either internal or external) as a result of radioactive iodine treatment for thyroid cancer? I'm a CLT, but don't know how to answer this question for my patient. Thank you!

Using what I LEaRNed, I believe I had successfully managed leg LE stage 1-2 (worse on rt)esp to prep4 TRHR 1 year ago and a TRKR 4 weeks ago. Would the tourniquet cause an LE flare? This does NOT seem like post-op swelling!! "Hoping" I will get attention and diagnosed.

Following a lumphectomy in June 2023, a total of 11 lymph nodes were removed. Follow-up treatment was radiation. I was diagnosed with lymphedema. In January 2024 my eye lids have turned red and swollen. Wonder if the eye lid problem is a result of poor drainage?

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,

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?

I've been diagnosed with stage 1 arm lymphedema. I'm wondering if it always progresses. Could there be a time I don't have to wear the compression sleeve all day? Thank you.

How long from the initial contact or referral does it take to get surgical treatment or genetic targeted pharmaceutical treatment?

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.

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.

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

My juzo compression foot to knee is helpful to limit lymph infiltration but when i seat down, after 2 days it gives me great headache 1st thing in the morning pushing me to give up wearing. Is the compression ill fitted? Secondary lymph after pelvic surgery. Thank you

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.

Dear doctor When can we expect an update on the clinical trial? Thank you

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?

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?

Is acupuncture contraindicated for lymphedema? Or is it less so as it used to be?

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.

How can a medical student pursue a specialty that performs lymphedema-related procedures, such as LYMPHA, LVA, and VLNT procedures? Does a medical student need to pursue a plastic surgery residency, in order to perform such procedures?

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?

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

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?