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.
Hello Dr Rockson I have LE in both arms left is worse. also in chest and torso. I am right handed. I have had occasions with ct scans where I am told only way to do contrast is in my hand or arms. I am frustrated by not having an alternative to risking increase in my LE to have tests. I have been successful with having blood draws from ankle. And limited success on BP from legs. So my question. My right arm is worse and while I do not want to make it worse I am more afraid of having the right one more effected that it is. Which arm would you recommend if I have To acquiesce to allowing them to use my arms? My thought is to protect the less troubled arm. I used compression sleeves daily and the flex it ouch pump Thanks Joan
I believe that your thinking is reasonable and would be my advice as well. Unfortunately, the IV contrast material is too concentrated to inject into the ankle veins, so the use of the arms is unavoidable.
I am a breast cancer survivor (right side). All of the lymph nodes were removed. I haven't had any problems, but I'm needing surgery on my right wrist for carpel tunnel. Can you tell me what my risk is for getting lymphedema if I have this done? Would it help if I wear the compression sleeve during the procedure and/or after? Thank you.
There are no formal statistics on the risk related to this procedure, but it is true that your risk for developing lymphedema in this setting is higher than the average population. If your surgeon will permit use of the sleeve during and/or after the surgery, I believe that it would be helpful in reducing risk.
Good day Dr. Rockson, My wife and I just finished watching your video on Lymphedema treatments which I believe is possibly now 3 years old. Sad to say we learned more in that 60 minutes than we have ever been told by my wife's oncologist, MD, rehab nurses and just about any health professional. So many questions we have. My wife was diagnosed (at 40) with breast cancer in 2014, and her treatment included left mastectomy, removal of 19 or so lymph nodes in the armpit, chemo and radiation. In the past 12 months she has exhibited some clear symptoms of the onset of lymphedema. Notably pitting in her lower arm, and clear indentations under tighter clothing, as well as just about anything the arm rests on leaving an impression. She has been to a lymphedema nurse/therapist twice in the past few months, and each time she has returned with a tightly wrapped compression dressing. I do not recall the effectiveness of the first treatment some months back, but the recent one (this weekend) showed marked improvement in removing much of the swelling. Indeed, my wife indicated she can now see her elbow again. There is however still some swelling and areas where pitting can be observed. My feeling is we should continue with some aggressive treatment to completely remove as much swelling as possible. Is that the case? I would point out that my wife is around 130 LBs and 5'6", so not overweight by any stretch. Not sure if that is important. My wife is also quite small in the arms, and wears the smallest size compression sleeve available. She has worn one for about 6 months. I think the results with that have been modest at besst. Certainly considering the success of the tight bandage wrapping these past 48 hours. Do compression sleeves lose their elasticity over time? Is wrapping better than the sleeves? In your video, you make reference to a several week treatment course of massage and compression. The lymphedema nurse that my wife sees, has made no such reference to a return visit or any sort of proactive ongoing maintenance. No massage therapy has ever been suggested. Could you perhaps offer some detail of the types of treatment plans your patients might receive. Where we might go to find advice on massage technique, wrapping etc.. It is my opinion that, with the appropriate self management, my wife and I would be able to manage her condition with some satisfaction. I just downloaded Cynthia Shecters video on self bandaging, as It may well be something for us to consider on a more regular basis, rather than going back and forth to hospital every 2-3 months. I trust this request is already longer than most of those you receive, so I will leave it there. I guess what I am saying is that there appear to be limited local knowledge of the condition and it is my opinion we will need to be rather proactive in trying to develop a personal treatment plan for my wife. Many Thanks Tony
I would be happy to help if I can. From your description, your wife may need a more aggressive approach than she has been given. I am not enamored of self-bandaging and never recommend it, but if you can supply your location (city and state), I can try to guide you an appropriate, well-trained therapist.
Thanks for all of your excellent questions, which can be addressed when you are in the hands of the right therapist.
My husband had a complete lymph node dissection of the right inguinal lymph nodes back in January. He started Yervoy, and had two treatments of it, which really affected his liver function, so he stopped. He has since started Opdivo and dropped the Yervoy, and has had 9 treatments over the past 18-20 weeks. He has recently started having edema in his left ankle, foot, and calf. Is this common? What might cause this? Is there anything that we can do besides manual lymph drainage massage?
I can’t give you an explanation based on the information provided, but this should be unrelated to the prior lymph node dissection. An explanation would require a thorough evaluation.
I have a had a swollen red painful breast for sometime which made sores only two and years apart. Then it started in the other breast red and discolored hot and inflamed. The left breast became so painful I went to the ER I was admitted I thought this was a breast issue and was concerned about inflammatory breast cancer and the did a skin biopsy but it made a hole so looks like a punch biopsy, Well it came back mild Lymphangiectasia and focal micro thrombus. I had a breast reduction in 2005 no other surgery for the chest and no lymph nodes remove. I now am having problems with my stomach and eating. I can not get any help the doctors have never seen this or heard of it. I don't know what kind of Doctor to see. I have seen breast oncology surgeon, hematology, infectious disease, vascular, rheumatology I have four different autoimmune diseases and they say its not related. What kind of doctor do I see and where can I get help. I feel like im going to lose my left breast its very painful and I have dilated blood vessels in both of them. I live in Calif. and go to Cedars-Sinai hospital.
I would be concerned that this is in some way related to your other autoimmune disorders. Many of the specialties that you have consulted are appropriate. At this stage I would recommend asking one of the doctors to do MRIs of the breasts to see if there are any clues to source of the problem.
I have had lymphedema in my feet, ankles and legs for about 10 years. My neurologist thinks my lymphedema was caused by a genetic reaction from a statin (Advicor). The swelling began about one month after I began the Advicor. After several months, my doctor stopped the Advicor but the lymphedema has continued. I wear compression stockings and walk several miles several times a week. I am a 74-year-old thin male in good health and live a healthy lifestyle. My legs feel weak and ‘water logged’ and seem to be worsening. I am worried that someday I may end up dependent on a walker. Do you have suggestions on what I can do to stop the progression of my symptoms please? I would appreciate your thoughts please. Thank you very much.
It is difficult to give a knowledgeable answer without access to your medical information and a thorough physical exam. In general, I believe that the weakness and the edema are separate problems. I don’t believe that the lymphedema is likely to be a result of the adverse reaction to the drug. Perhaps you can request a referral to a lymphedema therapist for some more aggressive treatment.
I have had swollen feet for over 20 years. I really want normal looking legs and I'm happy they don't hurt me. The swelling is in the ankle area on both feet. I have taken diuretics for years with little improvement. I now wear compression socks to manage it. My question is what can be done to help me with this issue? I'm tired of being conscious about them
I understand your desire to find an answer and would love to help, but there are many potential causes of swollen feet, among them lymphatic problems, vein disorders, cardiac, liver and endocrine conditions. You need a thorough evaluation by a knowledgeable clinician. Once the problem is identified, you will be given options to correct or reduce the symptoms.
Can one get abdominal lymphedema following abdominal/thoracic surgery that included removal of lymph nodes? And if so, how can I obtain written information that I can present to my gastroenterologist? I don't want to even ask him about it again without some prior information about the possibility. I had an esophagectomy with gastric pull-up in 2006. I don't think my enlarging abdomen in the absence of weight gain anywhere else is all fat, but the last time I asked him about it, he just told me to go on a diet and exercise more. I need information first. If it is possible, what kind of testing should be done to determine if that is the case?
It is very unlikely that abdominal lymphedema would occur with the surgery that you describe. If the abdomen is enlarging, the lymphatic cause could be collections of lymph within the peritoneal cavity (ascites), but it is unlikely that your MD would be unaware of that possibility. An appropriate test would be an abdominal ultrasound to exclude this explanation. Lymphedema of the abdomen alone would not likely occur without some changes in the legs as well.
I have several questions & concerns... For my whole life have had left leg fullness, gurgling feeling & left leg has always been larger than my right leg. (I am right handed) Also have chronic sinusitis, pain and occasional facial swelling on my left side. For the last several years have decreased sense of taste & smell. In addition, have had High Anti-Nuclear Antibodies since I was a teenager as well as Raynaud's Phenomenon. Have had "left- breast sensations" for over 15 years & about 3 years ago noticed swelling in my left arm. Dx of Osteoporosis about 3 years ago & Lichen Sclerosis last year. Have been to Vascular Surgeon, Orthopedist, Rheumatologist, Endocrinologist, Breast Specialist and finally a Lymphedema specialist. Lymphoscintography showed positive for lymphedema only in the left axillary area. Currently having MLD -should be completed this week. I believe I have something going on in my leg and am concerned about the sensations in my breast still in addition to other symptoms that I am experiencing. Would like to find a doctor who can do experimental ( non pharmaceutical) treatment and help keep any future issues in check. LiLo
I am so sorry, but for an issue as complex as this, I don’t have any answers without a full evaluation. I think it would be best to pose your concerns to the lymphedema specialist who has established the diagnosis.
I found your information after searching for lymph system specialists. My wife is a chronic pain patient with CRPS who was on bed rest for over 4 years.. Her CRPS is getting better but her lymph system has been very concerning. Her nodes are swollen all over her body, head, neck, arms, legs, back. She is now receiving twice weekly lymph drainage at lifespan but they say she is unlike anyone they have seen. I am very concerned as she spends 18+ hours a day manually draining herself, her skin is red, nodes swollen and she has severe pain where her lymph is blocked causing her joints to sublux. Her lymph system also explodes when she is exposed to environmental toxins such as myotoxins or VOCs as well. We need help diagnosing what is going on and I was hoping you could help us or point us in the right direction. If you could please let me know if you can help us or point us to someone we can see ASAP that would be greatly appreciated as I am very concerned for her health.
As per Dr. Rockson-
The problem that you describe certainly sounds concerning, but your wife needs a thorough medical evaluation, because the nature of the problem is very unclear, based upon your description. I would advise seeking a consultation with a hematologist as a first step.
I have a pain pump implanted inside me and medicine infused into my spine. I read where this can trigger Lymphedema; which I believe it did. If I removed the pump and stopped medicine being infused into my spine, could that reverse my lymphedema, or has the damage already been done?
I’m afraid that if the pump insertion is the cause of the lymphedema, the damage may have already been done; it is possible that the degree of lymphedema might reduce if the pump were no longer there. However, it is also possible that the lymphedema is the consequence of the condition that is causing the pain.
Hello - I am a 50 year okd female and was recently diagnosed with sarcoidosis after having erythema nodosum, enlarged mediastinal lymph nodes and a biopsy of T9 vertebrae that came back with granulomas consistent with sarcoidosis. I am wondering if my lymphatic system functions normally if I have granulomas in ny lymph nodes? In the past several years I have noticed difficulties when I try to do various "cleanses". I also hve a slight swelling in my left ankle but other than that I dont have symptoms. I am wondering if my lymph sustem can still function normally when granulomas are formed in some of the nodes. Thanks
Yes, it is certainly possible for the lymph nodes to continue to work normally in the face of granulomas within them. Also, the mediastinal nodes will affect the internal structures, such as the lungs, in the chest cavity, but should have no relationship to slight ankle swelling.
Mild to moderate lymphedema developed in my left arm, left chest and back after breast cancer treatment (biopsy, lumpectomy, three lymph nodes removed, 33 sessions of radiation) in 2011. I had a mammoplasty (breast reduction) in 2012 which successful lessened the lymphedema in my chest. In 2017 I had a suspicious something show up on my mammogram, which led to a stereotactic biopsy. Thankfully, it was not cancer. But that procedure caused an increase in lymphedema, for which I sought treatment. For six years I have been under the watchful care of a trusted occupational therapist who specializes in lymphedema treatment. For about two and a half years I have been using an at-home sequential pump with an eight-chambered vest for one hour, approximately every other day. I wear a compression sleeve during my daily 40 minute exercise routine, and also during automobile and airplane travel. I am extremely fair skinned, and suffered multiple peeling sunburns each summer as a child living in a desert climate. I visit my dermatologist every six months. I have had multiple surgeries to remove basal and squamous cancer from my face, including my lips. To reduce the need for future surgery on my face, I have had three sessions of photodynamic therapy (PDT, also known as blu light therapy) to combat actinic keratosis (AK) and other unseen precancerous cells with good result. Currently, I have numerous actinic keratosis (AKs) on both of my forearms. The dermatologist recommends one session of photodynamic therapy for my arms. PDT would eliminate the AKs, as well as other yet unseen precancerous cells. Another option is to freeze each lesion individually, and freeze new ones as they appear over time. My strong preference is to have the one time PDT. However, I certainly do not want to cause an increase in lymphedema in my body. Given my history, what is your opinion regarding the use of PDT on my lymphatic left arm? Knowing I have an excellent occupational therapist, I am less afraid of an increase in swelling than I might be otherwise.
Unfortunately, there is a small but defined risk of increasing lymphedema with any of the procedures to remove the AKs, either PDT or freezing. There is no way to predict which of the approaches would be more tolerable for your body.
I am 3 weeks post op bilateral mastectomy with removal of lymph nodes under left arm. Everything looks fine so far, and I am ready to begin walking/exercising, but am concerned about causing lymphedema because of a prior condition that i don't fully understand. For as long as i can remember when I walk, my hands and fingers noticeably swell up. This is particularly bad in warm weather - a moderate walk on a hot summer day will cause my hands and fingers to become extremely swollen. Nobody I know swells up to this degree. All summer long my feet are perpetually swollen. Will whatever causes this, predispose me to getting lymphedema? (Is the swelling even related to the lymph system?) I know exercise is important; do I need to take any precautions other than those normally advised for breast cancer patients with lymph node removal? (FYI - I am about 50 pounds overweight and have not been a regular exerciser, although I intend to change that. Maybe the swelling is worsened by those factors? )Thanks.
I am not able to explain to you why you have this pre-existing tendency to swell, but I do feel that it may contribute to any tendency that might be present to develop lymphedema following your surgery. My suggestion is to consider getting a prescription from you physician for a Class I sleeve and glove, to be worn on your left arm during the type of exercise that previously has caused swelling. You should also wear the garment during air travel, high altitude travel, and other forms of heavy exertion, to help to protect the arm. You don’t describe lymph node sampling on the R side, so compression for the R am should not be necessary.
My questions are regarding the risks of worsening lower extremity lymphedema by having synovial fluid injections in the knee and a steroid injection in the hip, both on the affected side. I developed lymphedema in the right leg one year ago after an international flight. In 2015 I had radiation to the right groin area after Merkel Cell Carcinoma was diagnosed in an inguinal lymph node which was surgically removed. The lymphedema is stage 1, and managed well by wearing a compression stocking daily. Now, debilitating arthritis has developed in my right hip and right knee. Also, the MCC has returned in an iliac lymph node. I am currently in an MCC trial for pembrolizumab (Keytruda) . My doctor has approved the injections for my knee, but he is not a lymphedema expert. 1. What are the risks of worsening lymphedema with synovial fluid shots to the knee? 2. What are the risks of worsening lymphedema with a steroid shot to the hip? 3. Is there any statistical data addressing these questions? 3. What advice would you offer in considering these two treatments? Many thanks for your thoughts and recommendations.
As per Dr. Rockson-
This is a difficult decision for you. Both the injections and the untreated arthritis pose a risk for the lymphedema to worsen. Of the two, the steroid injections are probably less dangerous for the lymphedema than the arthritis. This presumes that the the physician will use strict sterile technique and that compression will be worn consistently after the injections. As with all medical decisions, this will have to be based on a risk/benefit analysis. Unfortunately, there are no statistics available to assist in the decision.
I have severe Lymphedema and Within a few days I started having severe pain in my legs and feet. When sitting or standing my legs and feet go numb and become very painful. What could this be?€++I was told it told it neurapuhy, could this be causing all this pain?
Lymphedema can cause pain, but the degree of discomfort that you describe. Neuropathy could be the cause. From your description, it would seem that a full evaluation would be helpful.
I've had lower leg lymphedema for 20+ years. Early symptoms occurred after being on me feet all day in the heat, like at an amusement park. The skin was red, bumpy, burned, itched, and the swelling and pain curtailed any next day enjoyment. Exercise became less and less because my legs always swelled and itched. I gained weight and the legs became even worse with open wounds and leaking fluid that I couldn't keep the little gnats away no matter how much I bandaged them. One year ago I had gastric bypass and lost 124 lbs. my legs are very skinny now and the sores are gone. My legs are terribly discolored (dark purple/red) and the skin is very sensitive. Following my surgery I developed a huge DVT behind my knee and in my upper arm. I am still on xeralto. I manage the fluid in my legs using bumex and an electronic compression machine. The bumex lowers my blood pressure and my pulse runs around 42-44, so exercise is very limited again. My legs hurt every minute of every day. All I can take is Tylenol and it does work. What should be my next course of action? Cardiology? PT? Can dermatology help me?
I believe, from your description, that a thorough evaluation of your venous system might be helpful - either cardiology, vascular medicine, or vascular surgery. This does not sound like a dermatologic problem.
I have lymphedema on my right arm. I have had chemotherapy and radiation on my right breast. I am scheduled to have a CT scan directed biopsy on my lower right long. Can this procedure increase my lymphedema?
There is some potential shared lymphatic drainage between your right arm and the chest wall, but the added lymphedema risk of the procedure that you will have is extremely small.
I have a patient with lymphedema in both lower extremities, polycythemia vera, Meniere's Disease, hypertension, and elevated cholesterol. She takes hydroxyurea for the PV. I recently got her a Flexitouch for home use and she said that she gets chills after each treatment. I asked her if she gets chills when I do MLD with her during our physical therapy sessions. She said that she does but she attributed this to the cold weather. I searched PubMed and found 5 articles talking about hydroxyurea setting off infection-like symptoms that subside when the drug use is discontinued. Have you heard anything about chills and MLD or Flexitouch with no fever, nausea or vomiting? What do you recommend we do? Thanking you in advance. Jan Bruckner, PT, PhD, CLT-LANA
This is a new problem to me. One can envision that massage therapy and/or Flexitouch could send showers of bacteria if there was an active cellulitis, but that doesn’t seem to be the case here, by your description. As a first step, the patient can try to record body temperature before, during and after Flexitouch use. If there is no fever, then I don’t see any implicit reason that the treatment couldn’t be continued.
Thanks for this question.
I am wondering if you have any information regarding primary lymphedema and hormone replacement therapy. I have lymphedema in both legs, which manifested around age 12. I have managed it quite well for over 40 years. But, it seems that with the onset of menopause, it has become increasingly difficult to manage. In the past year, I had 4 different episodes of cellulitis, two of which involved hospital stays due to sepsis. (I had always heard this was a complication of lymphedema but never quite believed it!) For a host of symptoms, hormone replacement therapy has been recommended – even to potentially improve the management of the lymphedema - but, my doctor will not prescribe it without more information regarding potential blood clots and lymphedema. Any thoughts would be greatly appreciated.
If the lymphedema is not on the basis of prior clotting in the veins, then there is no elevated risk for the hormone replacement therapy (all estrogen therapy carries some risk for increasing deep vein thrombosis). The effect of hormone therapy on lymphedema is unpredictable—it could make the condition either better or worse (or, perhaps, be neutral).
I am wondering if you have any information regarding primary lymphedema and hormone replacement therapy. I have lymphedema in both legs, which manifested around age 12. I have managed it quite well for over 40 years. But, it seems that with the onset of menopause, it has become increasingly difficult to manage. In the past year, I had 4 different episodes of cellulitis, two of which involved hospital stays due to sepsis. (I had always heard this was a complication of lymphedema but never quite believed it!) For a host of symptoms, hormone replacement therapy has been recommended – even to potentially improve the management of the lymphedema - but, my doctor will not prescribe it without more information regarding potential blood clots and lymphedema. Any thoughts would be greatly appreciated.
The relationship between the lymphatic system and female hormones is complex, but, in principle, hormone replacement therapy should not aggravate the preexisting lymphedema. However, these hormones do carry a risk of blood clots in all perimenopausal women, so the decision to use them should be based on a risk/benefit analysis of the individual patient.
I have had primary Lymphedema in my right leg for 30 yrs. In October 2016 I tore the miniscus in my knee and it has yet to heal. I am in constant pain and the doctor has suggested a cortisone shot MAY help in the healing process by reducing the inflammation. I am fearful the shot may have an adverse affect and increase the swelling. Please advise me. I would very much appreciate your professional opinion and any advice you can share to help me make my decision. Thank you very much
Many decisions in Medicine require a balance between risk and benefit, including your current one. If the cortisone reduces the inflammation in your knee, it will potentially have a beneficial overall effect on your lymphedema, but the effect of the cortisone itself on the lymphedema, as well as the minor trauma from the injection may have adverse consequences, as you fear. I cannot advise the best personal strategy for you without examining you, but, in sum, it seems like a reasonable proposal. At the end, it will have to be a personal decision for you.
Best of luck to you!
My 5 month old has chylous ascites. I believe it started either at birth or shortly after. She has been in a children's hospital for a month now and still doctors are continuing with what has been done in published PIL situations. she is otherwise a very healthy baby with no preexisting medical condition and was born at 42 wks. She has been on TPN for 2 weeks and will go back on a medium chain triglyceride formula to see how the body will tolerate it. Tests of her lymphatic system showed a small abrasion but they cannot say if there are smaller ones throughout the intestines. it took 4 months to really see her stomach was too large. Have you had any cases like this where the body healed itself and they went on to live a normal life? Does that exist? As of now i have no answers.
I certainly understand your concerns. The simple answer is that, in some cases, the lymphatic circulation can mature over time, so that the initial problem decreases as the child grows. TPN is the correct initial medical management for the chylous ascites; when she is ready for an attempt at food by mouth, there are medications that can help to maintain the benefit of the TPN.
I don’t have any specific recommendations at this time, but it will be important to eventually be under the care of a specialist who is familiar with this condition and its management.
Hello, I have had lymphedema for about ten years now. My disease was the result of trauma I suffered to the right leg when I was in the military. I have a small lymphedema wound that just won't stop weeping. I have tried xeroform medicated pads with wrapping. I'm now trying zinc oxide ointment cream with wrapping but this wound is very stubborn. Do you have any advice for treating these wounds effectively? The risk of infection does concern me as I've already had one very serious infection that was septic.
The most important element in wound healing for lymphedema is to optimize compression. If you are not under active care with a lymphedema therapist, it might be appropriate to pursue this. For wound healing, you want to use the most inelastic form of compression that is available to you.
Given that Lipedema has a genetic component is it safe for me to donate blood ? Has this been explored before? Before I knew what Lipedema was I was told by Canadian Blood Services that I could not donate until I knew why I had pains in my legs. Now that I know (or actually suspect as I do not have a formal diagnosis yet) I would like to know if it is safe for me to donate blood. Thanks for your time and consideration Lainie Cambria
Yes, it is certainly safe to donate blood with lipedema, provided that there is no other medical condition that would make this unsafe.
My son was just diagnosed with Lymphatic Malformation, and we're having a hard time finding anyone with familiarity with the problem. We obviously need to get it taken care of, but don't know where to begin. can you recommend anyone or any place in the NY Metropolitan area for treatment? We can travel out of the area if that is the best option, but obviously would prefer to stay closer to home if possible.
I am happy to help. This is best addressed outside of a public forum. Please provide your contact information to LE&RN; so that I can communicate with you directly.
I have lymphedema and I have recently been told it is time now to treat me for hyperthyroidism. My choices are treatment with radioactive isotope I-131 or surgery. Is the radioactive isotope safe for lymphedema patients? I understand there are inherent risks with any surgery, as well. What about the synthetic thyroid replacement therapy, Levothyroxine, which is used after treatment? Are there any contraindications for lymphedema patients? Thank you.
There is no evidence that I131 would be harmful to lymphedema; unless you have lymphedema of the head/neck, the surgical approach should also be neutral with regard to the lymphedema. Levothyroxine is perfectly safe and very important in this case. Treatment for hyperthyroidism very often results in thyroid underactivity which must be treated. Leaving the hypothyroid condition untreated could make lymphedema much worse.
I'm writing on behalf of my mother who suffers from lymphedema in her left leg after removal of lymph nodes for Stage 1 Ovarian Cancer. She had the surgery in July 2013 and she developed the lymphedema about 6 months later. It has been mostly managed by compression stockings, massage, velcro wraps for overnight and an occasional treatment with some bands that she would wear for day or two. I am not sure why she hasn't been given other form of decompression therapy. She lives in a town in PR where there are no specialists. Last year in July 2015 she developed a serious case of cellulitis and needed to be in the ICU as she became septic. It was managed with antibiotics and she improved. She continued with her usual lymphedema treatment though she was told not to use the bands treatment again as they felt it may have precipitated the cellulitis? Last week, May 2016 she developed cellulitis again, it wasn't as serious but she was hospitalized and treated with antibiotics. My question is what treatment should she be receiving for her lymphedema treatment now after having had recurrent cellulitis and how soon after recovery? Her PCP has told her not to use the stockings for now but he agreed that she should get massages. It was discussed whether she should be on antibiotic prophylaxis, but unfortunately she doesn't seem to be a candidate because in this last hospitalization she got C. Diffile from the usual antibiotic treatment and had to be switched to azithromycin. Any suggestions about what should be the best course of treatment in her case for the lymphedema and prevention of cellulitis? Thank you.
You ask some complex questions that require very individuated answers, so without directly evaluating your mother, I’m unable to give definitive answers. Here are some of the general principles:
1. cellulitis is a common complication of lymphedema, and can be recurrent
2. the best way to prevent cellulitis is to treat each episode thoroughly with antibiotics, until all evidence of the infection has resolved. At times, this can require continuous treatment for 3,4 or even 8 weeks.
3. I generally do not recomment prophylactic antibiotics unless there have been more than 3 infections within one calendar year. You are correct that the C. difficile superinfection makes this decision more difficult
4. other than complete treatment of infection, prevention of cellulitis depends on optimizing the decongestive therapy of the lymphedema. I do not agree with omitting the stockings because of cellulitis, once the antibiotics are in place.
I hope that some of this information will be helpful to you.
I have suffered from lyphedema for 3 years. This time I have open wounds around the bottom of both legs. They are so bad that they drain heavily, burn, and it's very painful. I use non stick pads, gauze and site bandages then wrap my legs with Ace Bandages. I can not get them to heal. My Dr gave me silvadine(Ms) and it only keeps it moist, I also tried Manuka honey and had a allergic reaction to it. I'm lost, I'm also taking antibiotics because they are so infected. Please HELP!! Thank you for your time. T.Whitman
Open wounds with lymphedema are not common and usually reflect a concomitant problem. I’m afraid that this is not a problem that can be solved by electronic communication. You should inquire whether the physicians can evaluate your venous circulation and also request a referral to a wound treatment center.
First, I am so thankful for this website! Reading others questions encouraged me to write you. On March 4, 2016, I had surgery for stage 1 ovarian cancer that was contained in within my right ovary. During surgery a complete hysterectomy was performed along with removal of 28 lymph nodes. Everything tested was negative, so I chose no chemo treatments for right now. I have concerns about the swelling, numbness and burning sensations I am having in my inner thighs and lower pelvic area. I was fairly active before my surgery but have concerns about making my conditions worse. I am currently waiting for a returned call from my doctor to find out about what is available to help. Can you give me some advice to help me get started in the right direction before it gets worse? Thank you, T
Thank you for your questions. There are probably multiple explanations for what you are experiencing. Some of these complaints are related to the nerves that have been affected by surgery. The swelling itself might be early lymphedema, but not necessarily. You do need evaluation. Pending your evaluation, it would not be harmful to use over-the-counter compression that, in your case, would need to be pantyhose style. This interim move may require modification after you have been evaluated.
Lymphedema Without a Cause I was diagnosed with Lymphedema about 5 years ago. It’s in my right foot/ankle and it’s never moved. I’ve been to numerous therapist and I take my care very serious. I always pump and do my manual exercises. I eat well and drink lots of fluids. I jog a few times a week to keep my fluids moving. It’s been 5 years and I’ve never had any swelling outside of my foot. Recently, we decided to see if I was a candidate for lymph node bypass surgery. I had a lymphoscintigraphy and they couldn’t find any lymph nodes in my right leg. However; my right leg is totally fine. It’s my foot that’s a problem. Either way, I’m not a candidate for surgery. I’ve stumped a lot of doctors in regards to the situation. Is the lymphoscintigraphy a sign that I have no lymph nodes in my right leg? Should I expect it to swell eventually? This news was devastating to me. Could the results of the lymphoscintigraphy mean that I have full blockage in my foot and the dye never made it to my leg? I’m very confused as to why I have a perfectly fine leg and only swelling in my foot. Thanks, Tim
I fully understand your confusion, but it’s important for you and your doctors to understand that the lymphoscintigram is a functional test and not an anatomic one. The failure to see lymph nodes doesn’t mean that they aren’t there. It does mean that your lymphatic function throughout the leg is abnormal, even though the swelling is only present in the foot (I’m assuming that they studied the left leg and that it was normal).
Dr. Rockson’s response-
Sporadic swelling of this type could conceivably represent a lymphatic problem, but is not the most likely explanation. If you and your doctors wish to explore this question further, I would recommend a lymphoscintigram to evaluate lymphatic function objectively.
I have had lymphedema in my left leg for quite sometime. It started with a deep bone bruise on my shin and after having knee surgery it became an acute and chronic problem. I have had massage and compression stocking treatment and even with compression stockings I swell as much with or without. My mother had same issues along with obesity,diabetes,and congestive heart failure it took her life at age 69. Is there anything that can be done to minimize the swelling? I can't wear shorts or swim wear because of the stigma and stares I get. It is frustrating because I am still somewhat active at age 66 and would like to be able to sustain activity but the lymphedema tends to cause enough discomfort to slow me down.
I do understand your frustration. Unfortunately, lymphedema is a complex problem with many attributes. The answer to your question would depend on the individual attributes of your lymphedema, which, in turn, would require a thorough evaluation by a specialist. I’m sorry that I can’t be more helpful here.
I believe that what you are doing is all that can or should be done at this stage. Chances are very good that you have stabilized the condition. Best wishes.
October 2001, I suffered a mastectomy, followed by chemo, radiation and 5 years Hrt. Sometime Lymphadema developed in my upper left arm. In the last 2 or 3 years, once in a while small lymph profusions pop up on my lower left arm. They will last only minutes to an hour. Every once in a while a pore in my upper arm will leak lymph. The only way to stop that is a bit of Neosporin covered by a bandaid. Do you have any idea why these two things happen?
These are called lymph cysts and they reflect the presence of the underlying lymphedema problem. Perhaps more aggressive treatment of the lymphedema will help to decrease the frequency of these occurrences.
my right arm has been swollen, not too bad but bad enough, since january 2013. from wrist to bend at elbow. i have no pain but if it gets pricked with a thorn or something it starts to leak. i've gone to numerous physicians and no one seems to be able to help. i have had a few lymphatic massage therapies in the past. what can i do to get the swelling down or have it go away? thank you for your time. hope to hear from you soon. jessie
Thanks so much for your question. This sounds like fully developed lymphedema. Lymphatic massage is a start, but it is not the complete treatment. You should be under the care of a certified lymphedema therapist who can do complete decongestive therapy, which includes multilayer bandaging and many other elements. If you have trouble finding a therapist, LE&RN; can help.
My father, currently 92, developed lymphadema 4 years ago following shingles. His right arm is larger and very painful. He is suffering a lot. Another problem, in hospital now for chf tx, has poor aortic valve flow. I was able to have him start compression treatment when we found out about heart. He has been very active, driving car and farmed his whole life. I am an RN. Is there anything I can do for him for this pain?
Lymphedema is a cause of pain, but not in general a cause of severe pain, as you describe. Based on your father’s history, this is more likely post-herpetic neuralgia, related to the shingles. This would generally require drug therapy, for which there are good options, perhaps under the care of a neurologist or pain management specialist.
I am a 67 year old male being treated for Type 2 Diabetes for the last 10 years. Approximately 5 years ago I began experiencing severe redness and skin blisters on the shins of both of my legs. There has been no pattern to the blisters - sometimes they appear almost everyday and other times they may not appear for weeks. The skin on the shin area of both legs is very thin and irregular, you can see small "bumps" but there is no fluid in them It is not painful but the condition seems to be spreading and not improving. One of my medications is flouresamide and I wear compression stocking almost daily to help with the swelling. I had vein redirection ( for lack of a better description) treatment done over the last 6 months and when that didn't help I was told I have lymphedema. I'm trying to find out if there is a treatment or medication to try to help address the skin condition and blisters I experience. Everything I have read seems to indicate that lymphedema is related to cancer treatment and breast cancer treatment. Am I way off base regarding what I think I have or is this something people with diabetes have experienced.
There are many causes for lymphedema, including potentially issues that relate to lymphedema. Similarly, the condition that you describe could be many things, including lymphedema, but not limited to diabetes. I can only suggest that a thorough evaluation by a specialist, including a dermatologist, would be very helpful to establish the correct diagnosis.
I am a 37 year old male that has had lymphedema in both of my legs diagnosed since late 2005 early 2006. I believe that the cause of mine is due to an exposure to JP-5 Avaiation fuel that saturated my legs for approximatly 30 min 3 to 4 years earlier and was not noticed until a cellulitis infection developed. I have had no surgery's or cancers. My question is that could obsorbtion of chemicals that are in aviation fuel cause lymphedema?
This cause of lymphedema has not been reported in the literature. However, chronic chemical exposure might damage the skin in a more nonspecific, leading either to chronic inflammation or to the possibility of infection (cellulitis). Either of these conditions can then damage the lymphatics and lead to development of lymphedema.
My daughter has had swollen lymph nodes neck, under arms, sides, for over a year a doctor puts her on steriods, antibotics, nothing seems to help keep it away, comes back or never really goes completely away just today she couldnt even use her arm because of the swelling and her face is very swollen the doctor put her on doxycycline again but the stongest one to see if this will help - we are at witts end trying to get answers. She has never had any surguries, has one child, and I do not know of anyone in our family that has lymphedema. Her blood work only shows her liver function is a little off any idea what this is?
Thanks for your question. Unfortunately, I can’t make a diagnosis from this description, but I don’t believe that you are describing a case of lymphedema. I would think that referral to either an infectious disease specialist or an immunologist, or both, would be helpful.
My daughter Cameron was just diagnosed with a lymphatic malformation in her left thigh. We have been watching it since she was 10 and finally figured out what was wrong when she turned 14. It grew gradually and then very fast in the spring of 2015. This diagnosis came on top of finding out she has cystic fibrosis this march. After the MRI I am concerned that I have not seen a doctor that specializes in lymphatic malformations. Her leg has decreased again since taking TOBI for the pseudomonia that UNC found in her lungs. It seems to be about a hand size now. I have no idea where to search for a doctor that knows more about malformations and their complications. She is very prone to infections because of CF and I am worried that it may one day effect her ability to play sports. UNC-CH offered a pediatric surgeon but they did not know much about lymphatic malformations. Thank you so much Christy
It would be best for you to search for academic hospitals that have a Vascular Anomalies clinic. These are not very well-distributed through the country and I am not aware of a program in North Carolina. The closest cities may be NY or Boston. We have a program here at Stanford as well.
Good luck to you and to Cameron!
Hi, Dr. Rockson, my questions concerns the effect of secondary lymphedema on your heart. I am a 64 year old female with secondary lymphedema in my left arm primarly from the elbow up to and under the armpit from a left breast mastectomy in late 2003 (19 lymph nodes removed and all were clear). Cancer was diagnosed as triple negative stage 2 DCIS/LCIS. I have had chemo and radiation in 2002 following a lumpectomy, chemo again in 2004 following the mastectomy. Have had lymphedema in left arm for past 10 years. I have had heart palpitations and high heart rate for past 4 years. Test by my current cardiologist show nothing wrong. Has me taking Propranolol 80 mg ER bid. The medication helps my blood pressure but I still have the palpitations an spikes in my heart rate. When I ask if the lymphedema is contributing to this he has no knowledge in this area. Please help me, Thank you
I am happy to help. Secondary lymphedema should have absolutely no impact on the heart or any relationship to palpitations. If the cardiologist has tested thoroughly, you should be reassured. Some of the chemo agents used for breast cancer can adversely affect the heart, but that would not be the case if you studies are negative.
Best of luck to you.
Hi Dr Rockson, I have read several times that that the difference between lymphedema and lipedema is that the foot is not affected in lipedema. I was diagnosed with primary lymphedema of the right leg 4 years ago and it is from hip to ankle, but my foot is not affected. My MLD therapist says that this is because my lymphedema is descending. Is that correct?
Sorry, that is not correct. Foot-sparing is relatively common in acquired lymphedema, but it can also occur in primary lymphedema. In other words, there is no particular interpretation that should be applied to a normal foot in lymphedema.
Good luck with your treatment!
I am currently in the process of having tests to diagnose a recently (2-week) swollen lower left leg under my doctor's orders. Ultrasound of leg (from hip to knee) ruled out a blood clot. One of the doctors my family physician sent me to is a podiatrist who wrote me a script for ultrasound of the pelvic region to rule out any potential problems in that area. He also wants me to try low-dose furosemide with a Class 1 compression stocking for about three weeks to attempt bringing the swelling down. My question is, though there has been no diagnosis of lymphedema or anything else, is it a bad idea to use the furosemide since it is potentially harmful (according to some studies) with regard to the progression of lymphedema for people such as myself who have no other problems such as heart, kidney, etc.? In other words, is this short-term use of the furosemide particularly risky?
The use of furosemide is not risky but should not be considered for longterm use if the diagnosis is ultimately determined to be lymphedema. Of utmost importance is to establish the cause of the lymphedema, so that the treatment can be optimized.
I was diagnosed in 2013 with primary Neuroendocrine breast cancer. I had double mastectomy with expanders. 22 lymph nodes removed with one micrometastasis. I've had chemo but no radiation.lymphedema presented early on. Have been to a Lana certified therapist and religiously do the recommended regimen. I currently wear the flat knit 30/40 glove and sleeve for daytime. I use tribute nighttime foam garment. I apply pneumatic compression every night for one hour. Still have swelling in the forearm. The Port-o-cath gave me a subclavian vein blood clot with post thrombotic syndrome and prominent collateral veins. Catheter was removed. After Arixtra shots and then xaralto therapy, I elected to have an angioplasty where they successfully opened up the 100% blocked vein. 8 months later after I stopped xaralto therapy for the subclavian treatment, I developed a chronic superficial blood clot in a branch off the cephalic vein in the crook of my LE arm. Onc Dr did a hyper coagulation state study with no positive results. Vascular doc and Onc agreed to keep me on 20 mg xaralto daily to keep the blood clot from presenting. It is mostly working. I noticed the clot pops up sometimes after pneumatic compression but goes away. I have been on NSAIDs for 20 years for severe arthritis. Btw I have already endured 2 bouts of cellulitis (strep b, staph aureus) in 18 months and I have IVIG infusions monthly due to low IGG discovered after the 1st infection. Any thoughts about this issue of the chronic superficial blood clot in an LE arm? Have you heard of LE patients having this trouble? Is there any future danger for this condition? Options other than xaralto(tried aspirin with no results) Thanks Dee
Xarelto is a great drug for what you describe and your physicians have responded in a manner that is identical to what I would have done. Superficial clots are felt to be relatively benign, other than the symptoms that they cause, but in this context, I would be in favor of continued medical therapy, as you are doing.
Dear Dr. Rockson I have primary le and i am considering a lnt maybe next year. I have read about Biobridge to combine lnt. Will this be available soon? I just can not wait much longer since cons treatment is very time consuming and does not give enough help. However if biobridge would also be available soon for primary le, i would try to wait. Mostly trials take to ten years and that is not an option for me unfortunately. Thank you so much for your research!
The Biobridge will begin clinical trials within the next 3-4 months. We anticipate a 24 month period of observation, at which point we hope that the device will be ready for FDA approval. I hope that these projections are not overly optimistic.
Hi, Dr. Stanley, I have recently had a hysterectomy due to endometrial cancer, along with 22 total pelvic and para aortic lymph nodes removed. (18 pelvic, 4 para aortic) all uninvolved. I was not told ahead of time that there would be so many lymph nodes taken. I am very worried now. I would very much like to know what my future risk of lymphedema is statistically and based on your own experience. Most literature I come across deals with breast cancer, not endometrial. Thanks
I’m sorry to say that the risks after pelvic malignancy are proportionately higher than in breast cancer. Most estimates would predict a 30-40% lifetime risk in this situation. The good news is that 90% of that risk should make itself apparent during the first year, so that, once you reach that milestone, your lifetime risk after that falls to about 3-4%.
I’m sorry that I can’t be more reassuring than this. Best wishes.
My body started to produce lymphedema about 2 weeks before I went to the hospital to find out why my body was gaining weight. I did not know it was lymphedema. The hospital said I had Ovarian Cancer stage 3. Before they could operate on the cancer, they removed 2 liters of fluid from my stomach. After the surgery my lymphedema was still present and did not go away till I had my legs wrapped with foam and bandages everyday for 2 weeks. After that, I now where special hose. My question is, why did I have lymphedema after 77 years? My weight started at 116 and went to 130 lbs. When I left the hospital after the legs wrapping, my weight went down to 100 lbs. I am now getting Chemo treatments for my cancer.
The answer to your question is complicated. What happened before surgery is, unfortunately, typical for the presentation of ovarian cancer. The problem following the surgery is more likely related to the effect of the surgery itself, but could also be a combination of unresolved issues from pre-surgery, coupled with the effects of removal of lymph nodes.
I hope that this answer helps a bit.
hello I am a recent breast cancer survivor double Mastectomy 2013 removal of five lymph nodes on the left and one on the right. Both breasts had breast cancer. No chemo no radiation developed lymphedema in left arm and hand as well as chest and trunk. Have a great deal of pain believed to be related to the scar tissue damage to the lymphatics axilla web syndrome and fibromyalgia. Recently became aware of a product called quell. https://www.quellrelief.com/get-quell/ This is a form of TENS. My question is is there any contraindications for using such device when you have lymphedema? I appreciate your response thank you
Thank you for your question. I am not familiar with the specific manufacturer’s product that you describe but, in general, there is no known contraindication to the use of a TENS unit in relationship to lymphedema risk.
My son, 6yrs old was recently diagnosed. He has already been on a low fat, high protein, gluten free, dairy free, and histamine free diet since birth. He has Mastocytosis, early celiac, gerd, asthma with frequent episodes of pneumonia, frequent infections, fine motor delays, and now intestinal lymphangiectasia. My concern is, he is still having quite a bit of stomach pain, nausea, and loose stools. He has missed nearly two weeks of school and is very tired out, with a very poor appetite. He is also having difficulty maintaining weight. His Gi Dr added periactin to his medications, so far it has not helped. Looking for advice on ways to improve his health, I hate seeing him like this. Sincerely, Chris.
I do understand and empathize about your unhappiness on behalf of your son. Unfortunately, with a medical condition this complex, it is not possible for me to give advice without doing a full evaluation. If you are concerned that his treatment may not be optimal, it might be advisable to talk to the physician about a referral for a second opinion with another gastroenterologist.
I have a son who is 4 years old. His feet swell up to his ankle. It starts with a small blister between his fingers, which gradually becomes big and within 24 hours the swelling gradually reaches his ankle. He is in pain the whole time and itches a little bit. After a week or 10 days his foot is fine. (3 episodes the last 5 months). A vascular doctor said that these episodes are episodes of erysipelas caused by lymphedema. He said that lymphedema is at very premature stage (he said that my son’s skin is a little bit thicker in one leg than the other but it is not obvious by looking at him). Last week we had the 4th episode but the swelling was only in his toe. During one episode he had a blood test where eosinophila EOS were 23%. Is high EOS consistent with erysipelas? How can we confirm that he had lymphedema at this early stage where the swelling has not started yet?
I am sorry to say that this situation can’t be sorted out be a description over the internet. I will say that the high eosinophil count is not suggestive of erysipelas. I am not convinced, by what you describe, that this is lymphedema. I suggest that your son be evaluated by a specialist who can determine the exact nature of the problem (perhaps a hematologist or an infectious disease specialist or an immunologist).
Dear Dr. Rockson, I have been reading studies about the beneficial effects of coumarin in removing protein accumulation. Apparently there were some toxicity issues with liver metabolism, mostly when in vivo studies were done in rats, who apparently have a different preferential pathway. The nontoxic pathway goes to 7 hydroxycoumarin in humans. I have not been able to find any more recent research on this compound or on its metabolites. (Australian research..Casley-Smith, and Dr. Piller, etc.). I am wondering if there is further research being conducted? It seems that this is one drug that has the potential for breaking down the proteins that are accumulating with ultimate reduction shown in limb volume. There is extensive research being conducted on this whole family of compounds as well as synthetic analogues for many different diseases, with very promising results, so I would think that this line of research related to lymphadema would or should be continued. Do you have any updates in this regard? Thank you for your work and dedication.
There are two issues about coumarin:
1. systemic hepatotoxicity concerns prevented the FDA for approving coumarin for use in the US, and this is irrevocable.
2. even when tested prospectively in humans, the treatment benefit in lymphedema was very slight and possibly not sustained.
Taken in sum, this means that coumarin cannot, and probably shouldn’t, be used for lymphedema in the US.
Hi, I am 48 years old and have multiple sclerosis. In 2009 I had a new/experimental treatment. It was a high dose of cytoxen that brought my immune system down to 0, then pumped with nupogen (sp.) to get my white cells to reproduce. It actually worked for 2 months then the swelling started and I was dx with lymphedema a month or so later. The doctor in charge of this 2 month long hospital treatment said he has never had a patient with this issue. I have the swelling in both legs/feet, abdomen, both arms/hands, neck & face. My PCP referred me to the local hospital lymphedema clinic. Those folks helped me learn to manage it some what. Having the lymphedema is making the MS more difficult. The swelling in my legs, particularly my knee makes it almost impossible to bend my legs. I am in a wheelchair now still able to stand holding something and doing transfers but it is not just the spasticity from the MS making things difficult its the swelling of my knees, abdomen & fingers. I no longer can kneel or sit cross legged (which I know shouldn't be done with lymphedema), difficult opening items etc.. I have a flexi touch pump at home, wear leg compression garments everyday, have farrow wraps. Any information you can enlighten me with would be gratefully appreciated! I would really like to know why/what caused it. Thank you- NP
Thank you for writing. First of all, the title of your question refers to ‘lymphoma’, but I assume that this is an error, since your question itself refers to lymphedema.
Your question is complex and not easy to answer in the abstract. Clearly your medical issues are complicated, so there are many potential explanations. I’m afraid that I would need to do a full medical evaluation to reach a conclusion.
I wish you all the best in brining your medical problems under control.
Dear doctor, I would really appreciate some some advice as to where and how to get a better explanation of what happened here. I've done breast augmentation, axillary approach, and lumpectomy, the left breast, just on the outer lower side near the nipple. The tissue wasn't malign and no radiation or any sort of thing like that. Recovering slowly and successfully, at least seemed to be. I went back to work (flight attendant) 2 weeks after the surgery. Done 4 15h flights in 2 weeks without compression, and avoided lifting heavy but still sometimes I had to lift as it is part of my job. Continued flying shorter distances afterwards but at about 1 month after the surgery lymphedema flared up. Surgeon claims there was no damage to any of the lymph nodes and that all the cuts were minimal. It looks like that from the scars also. However lymphoscintigraphy shows no flow in the left arm and poor flow in the right. Strangely enough, the right arm appears normal on ground, only hand and fingers swell up during flights. Left arm is always a bit swollen but it is not significant. Hands swell up a bit on some days. I didn't have this ever in my life . And some doctors are contributing it to the breast augmentation. However the flow must be there since my arms are fairly normal in size, so the lymphoscintigraphy doesn't seem completely accurate. There is no damage to the nodes. And my arms look pretty good, except the pain and occasional swelling, especially on the flight. As I reduced my flying hours and started wearing sleeves inflight and on ground, the pain is rare and swelling is manageable. However, I would like to have a proper explanation for my condition, as I don't seem to fall in those "usual" categories of breast cancer and hereditary explanations. What would you suggest as the next step? Which test? Which doctor? My problem is I live in the Middle East where lymphedema is still something unknown and it's challenging to find a professional that has seen enough cases to be able to suggest anything to me, other than standard MLD and "it's the surgery" response. Thanks. Have a lovely day,
Of course, this is complicated and I am unable to give you a complete explanation without a full medical evaluation. However, acqured lymphedema seems to be the diagnosis. While uncommon, this is reported as a complication of breast biopsy even when there has been no lymph node excision. This would seem to be the explanation in your case. The problem should be treated like any other formo of lymphedema. I hope that you will be able to referred to a well-trained lymphedema therapist.
Dear Dr. Rockson. Thank you very much for your research! As a young woman suffering from primary bilateral lower limb le I would love to have some perspective. As I try to follow the ongoing research, most of it is for secondary le. I saw there could be something in the future combined with lymph node transfer. But I had a limfescintography done of the arms (because I thought about having a lymph node transfer) which showed general hypoplasia, (although no signs of it) so I guess that make me not a good candidate for this too. I saw that in Japan the company Anges Inc is having a clinical trial for primary le with their product Collategene. I guess for us primary lymphies a genetic approach is the future. I read that for Critical Limb Ischemia, Collategene has partnership with US. Will there maybe be a future partnership for Collategene in US too so that it will speed up the ongoing research? I would love to have access to treatment that will eventually improve my condition / or prevent it from getting worse (intense conservative treatment does not anymore unfortunately). Thank you very much for your dedication.
I am not aware of any specific partnerships with Anges and US investigators for lymphatic applications, but this may happen in the future. In general, investigators are still very interested in manipulating genetic factors to change the outcome of both primary and secondary lymphedema, so I advise you to remain optimistic.
In your on-line presentation, you indicated that the pneumatic pumps only remove the lymph fluid between the interstitial space and not the protein and cell waste. Does MLD/CDPT remove the protein and cell waste? If not, what does? What happens with the buildup of protein and cell waste in the interstitial space if it is not removed? Is this what feeds fat cells that leads to Stage III Lymphedema? If the limbs are compressed/constricted, does this mechanism stop/reverse the deposit of protein and cell waste in the interstitial space, thus reducing the overall limb size in time? Would diet have an effect on the amount of protein deposited? Please direct me to the best video to explain this. If you have pictures and diagrams, that would be helpful too. Thank you.
Your questions are complicated and interrelated. In summary, pumps help to remove only the water and electrolyte content of the tissue fluid, but leaves the larger molecules behind. All treatments that stimulate lymph transport will have the desired effect of removing both water and large molecules. These include MLD, multilayer bandaging, exercise, and some ancillary devices that work under low pressure to stimulate lymph transport. The mechanisms that lead to the progression to Stage III are complex, but likely include the chronic inflammation that results from unresolved accumulation of the protein-rich fluid that is present in lymphedema.
Diet has no effect on this process.
I hope that this brief explanation is helpful.
What Diagnostic Tests (other than the Lymphoscintigraphy) can be used to diagnose Primary Lymphedema? I have had what seams to be Primary Lymphedema since I was 15 years old. This diagnosis is based on my physical and history. I am now 50 years old and have just had my first Lymphoscintigraphy, which turned out negative for lymphedema. My vascular studies over the last 25 years have also turned out negative for vascular disease. My EKG is normal. I have been hospitalized twice with cellulitis (which went septic) originating in my right leg. My skin is now changing (dark, irregular spots on my legs bilaterally), I have a chronic infection on both legs which I manage with oral antibiotics, and I use 40-50 mm/Hg compression hose daily and now I am waring them at night, while I sleep. Elevation still works some and I am active (but was never told to ware my hose during exercise). Some days the edema is pitting and others it does not. I did not receive genetic testing as a teenager or adequate care at that time (prescribed 80 mg Lasix at the age of 15 for the edema in my legs), which I still am on, and have never had CDT (scheduled for next month). Would Near Infra-Red Florescence Imaging (NIR) be helpful in getting to the bottom of my bilateral lower extremity edema? Or should another Lymphoscintigraphy be done at another facility with another radiologist? The images of the first test were taken at 10 min. and 1.5 hours. Would it be better to have images over a longer period of time?
Your question is complex and therefore difficult to answer without access to more information. In general, lymphoscinitigraphy is very reliable in situations like yours, so that a negative study, if properly performed and interpreted. However, in medical testing, we talk about sensitivity and specificity. The lymphoscintigram is highly specific, which means that an abnormal test is quite accurate, but its sensitivity is estimated to be about 60%, which means that it might miss up to 40% of the cases of lymphedema. The NIR has higher sensitivity, but its specificity is unknown. The same is true of magnetic resonance lymphography.
In summary, more imaging might yield better information but, of greatest importance is a very thorough and thoughtful clinical evaluation by a well-trained physician.
Hi, I watched your presentation on new and emerging treatments 14 May 2014. I wondered if the drug trials are now finished and if the research has been published? When can we expect to have access to this drug? I am an American citizen living in Australia with secondary lymphedema (right arm). Thanks.
Thanks for your interest. I’m afraid that, when the video was filmed, I was a bit too optimistic about the time required to complete the trial. It is still ongoing, but the results continue to look very optimistic. We hope to publish the trial certainly by the end of this year.
Hi, I am a 30yr old man who suffers from Lymphodema in my left leg and groin. I have frequent infections and am currently on prophylatic antibiotics. Are there any other measures other than the standard keep skin clean, MLD etc which I can follow/take to help prevent infection. In addition I am are of your drug trial at Standford for helping improve the condition of patients with Lymphodema. Can you please provide an update on how this progressing as I understood the results to report Q4 2014.
Our clinical trial is still underway, with > 100 subjects enrolled. We are nearing completion, but the study is still in progress. Stay tuned!
Let me first say, thank you for being such a resource! Iam a 54 yr old nurse that has been managing my lymphedema tarda since my early 20's. I am extremely active enjoying a vigorous yoga practice and passion for cycling and hiking. Until recently I was able to manage by bilat lower extremity edema with 30-40 compression knee highs. Now over the past two years I feel as if the edema is creeping up to high thigh level and now into my pelvic area. The pain in my legs is intense at times, what is weird is that some days are okay and others (mostly nights, when I am standing in one place or legs are dependent )can be quite intense. I know am wearing thigh highs with spanks for the and compression. My question/concern is that as I age can I expect the edema to keep getting worse? (I have been able to keep the edema well managed currently) I find bike riding really helps with pain. Any resources, information, suggestions are greatly welcomed. 1. Ideas for pain management (I do not want to pain medication) 2. Will the edema get worse with age 3. How to prevent/minimize tissue damage or worsening collateral conditions 4. Reference for compression garments for athletes 5. S/s to be concerned about. My family has been dx with the genetic disorder Muir-Torre disease. I do not have this gene (thankfully, I'll take the lymphedema over the cancer gene) is there a genetic component to lymphedema tarda? Sorry of all the questions, I am just so thrilled to find a resource. Do you know of any MD's in the Hartford Ct area?
Thank you for enthusiasm and for your questions:
1. pain - supplements of horse chestnut seed and grape seed extracts may help. There is some evidence that low level cold laser treatments may also be useful.
2. unfortunately, it is the general nature for lymphedema to progress over time, but this is a general statement; it is impossible to predict in individual cases
3. aggressive management of the edema component through compression is the time-honored way to slow or prevent tissue damage
4. to my knowledge, there are no athlete-specific lymphedema compression garments
5. the biggest concern in lymphedema is soft tissue infection, so vigilance and early treatment is important.
Some forms of lymphedema tarda have a genetic component, and certainly there are as yet undiscovered mutations that likely will increase the number that are genetic in origin.
I’m sorry, I don’t have an MD resource for you.
I've had left leg lymphedema since 1990, 5 yrs after a radical hysterectomy, removal of lymph nodes and radiation. Have you heard of any positive results with the use of the whole food medication Vasculera. Was also curious whether it would work on people with long term lymphedema where the skin has become more fibrotic. Like other sufferers, this is now affecting my spine, leg and foot pain so have begun series of facet and nerve block injections. I do find that gentle hatha yoga has been the most effective treatment on a long term basis for flexibility but does not help with the leg. I also have a pump from years ago, the Bio Compression Systems, Sequential Circulator 3004. What is your opinion of utilizing the pump? Is my model outdated? Thank you in advance for your response. Jean
I will answer your questions sequentially:
1. Diosmin is the active ingredient in the product that you mention. Diosmin is a plant-derived bioflavenoid that may have a very modest benefit in chronic venous disease, but its efficacy has not been demonstrated well in lymphedema, so it is unlikely to be of significant benefit to you.
2. intercomparison of pneumatic compression pumps has not been performed in objective studies, so I will not comment on your specific pump. In general, it is felt that maximizing the number of chambers in the pump while simultaneously applying the minimal external pressure will provide the best outcomes. Pneumatic compression devices are not to be used as stand-alone therapies; rather, they can be incorporated in a complete approach that includes MLD, garments, exercise and skin care.
I have lymphedema in both arms and both legs. I also have hypodontia. Are the two hypoplastic conditions linked in any way? Thanks in advance.
There has been one reported case (to my knowledge) of an association between hypodontia and lymphedema, also including congenital heart disease and craniosynostosis (a defect of the skull).
It is very likely that the presence of these two conditions within your body indicates a central developmental problem that relates them; unfortunately, we don’t know what the mechanism is, or whether it is related to an isolated mutation.
Good luck to you.
Hi there, I am new to this website, and would like to ask a question. At the age of 31, I was diagnosed with Breast Cancer in 2006. I had a lumpectemy, senitel node removal (just 2 nodes removed) and six weeks of radiotherapy. No chemotherapy, but I had 5 years of hormone reducing medication. Everything was going along fine until March 2013. Whilst on vacation, I found a swollen lymph node at the back of my armpit, on my surgery side. After a four hour flight home, my armpit, side, back and chest swelled up, and remained like that for some time. It was also very painful, and hard to breath. The node was biopsied, and I was told it was not cancer recurrence, but a reactive lymph node. It is still there. Ever since then, I have had ongoing problems with the swelling in my trunk, every time I fly, or have trauma to my body or arm. My arm never swells up or hurts too much, just in my trunk. More recently however, the swelling has also been in my collar bone area and neck. When it's in my neck, it feels tight and all the lymph nodes swell up, only on the surgery side, and I become hoarse and lose my voice. I have lost my voice at least once a month this year (2014), with one case lasting for 10 weeks! Over time, when the swelling subsides in my neck, my voice returns. I guess my question is, could this be lymphedema or edema? I have been having weekly drainage massages, and dry brushing my neck which has helped, but what else can I do? The doctors I have seen usually dismiss me as the swelling is not in my arm. Have you heard of anyone else having something like this happen. Do you know of any specialists I can see in Australia? I look forward to hearing any advice you may have. Thank you
You describe a very complex presentation of what might be lymphedema. a knowledgeable clinician would be required to fully assess the problem.
I suggest that you contact Professor Neil Piller in Adelaide. He should be able to direct you to someone that would be able to help you.
I have had lymphedema in my left leg since 1982. The swelling began 5 years after my 1977 radical hysterectomy (treatment for invasive cervical cancer). The swelling was minimal until 1998 when I developed cellulitis as a result of a spider bite. My leg doubled in size. I do self-care and manage to keep fairly active. However, I began experiencing hip pain several weeks ago which has affected my exercise. My doctor suspects it is bursitis and as a result, has referred me to an orthopedic doctor. My doctor recommends a cortisone injection. My concern is that I have always been told to avoid any kind of injection on my leg. Will an injection in the hip make my lymphedema worse? Also, is it possible the hip pain is a result of the lymphedema? Thank you, Julia
Unfortunately, this is a common problem. Typically, the extra weight of the lymphedema leg creates mechanical imbalances that cause the hip joint to become stressed in various ways.
In situations like this, it is reasonable to assume that the benefits of the injection outweigh the risks, provided that the surgeon exercises great care to avoid the potential for infection. Alternatively, if you are intent on avoiding the injection, you can seek some attention with a therapist who can work with body alignment techniques, with the hope that, over time, the hip pain might be alleviated.
I had a right mastectomy in 2008 and left mastectomy in 2012. I have Lymphedema in my right arm, chest, trunk and back. I recently had to have my gallbadder removed. 2 days after surgery I experienced pressure and shortness of breath. Thinking it was the gas they use to expand the abdomen, I waited for 3 more days to go to the ER. At this point they had to rule out blood clots. Blood clots were ruled out. I told the ER Dr that I felt this was from my Lymphedema. The night before going to the ER I used my pump and lost 2 lbs of fluid, felt better, but the symptoms returned the next day, so I went to ER. The Dr told me he doubted it was from my Lymphedema because my chest X-ray didn't show fluid in my lungs. After 2 days in the hospital and still having shortness of breath I returned home to my pump and lost anther 2.5 pounds. My concern is did I damage my lungs or heart and could I still develop cellulitis? (I have had cellulitis 3 times prior in my right chest/breast area). Why don't Drs know about Lymphedema or listen to breast cancer patients?
1. Although I can’t say with any certainty what the problem is, you were right to listen to your body. I’m sorry that the MDs don’t listen.
2. From what you describe, there is no apparent danger to your heart or lungs, but I would have to see your tests to say that with confidence.
3. Unfortunately, cellulitis is always a risk in lymphedema, particularly if you’ve had recurrent episodes in the past. However, none of this history increases the likelihood of cellulitis above your existing risk.
I have Complex Regional Pain Syndrome which I got from a IV in 2001 so since I have been only able to use left arm for blood draws and iv. I now think I have maybe lymphedema in my arm around elbow I have hard areas of swelling and now swelling up into armpit and breast. I am having horrible time getting diagnosed. My doctor today sent me to ER for possible cellulitis. I have no blood clot but will swell until skin breaks a little. Right now holding phone I am having tingling into wrist and fingers. I have 6 autoimmune diseases since getting CRPS and have had thyroid and ovaries removed because of CRPS. I am not sure what to do been dealing with this for about 18 months but has gotten worse in last week
Your problem certainly sounds complex. It is possible what you describe is lymphedema, but examination by a knowledgeable clinician would be necessary to establish the diagnosis.
For completeness, it is also true that complex regional pain syndrome is associated with edema (distinct from lymphedema).
Best of luck.
My wife suffers from lymphedema only in her right foot. We do not know from what it started but would like to know if it is possible that it occurred after my wife's forefoot was run over by a SUV. Fortunately for us, nothing was broken as the leg sunk a little into the soil , but non the less my wife suffered the pain for a few days. At the moment of the accident i urged my wife not to take of the shoe ,in order to prevent damage if something was broken . Now,I suspect that the crush injury (from the weight of the SUV ) and the built up pressure inside the shoe might have caused the lymphedema in the lower part of the leg. My wife had our second child 8 months prior to the accident and suffered from pregnancy edema in both legs which disappeared gradually (within a few months) after the birth of our second child. Is it possible to develop lymphedema after an injury such as this?
I’m sorry to say that a crush injury, even if it does not traumatize the bones, can produce a localized lymphedema of this sort. I believe that the pregnancy edema is likely to be unrelated.
I am being treated by a lymphedema clinic for stage I lymphedema. They tell me that they can't recommend compression bandages for my arms at the same time as they treat my legs. They say it is dangerous for so much lymph fluid to be be redirected at the same time. Do you concur?
I don’t concur, presuming that you have no pre-existing heart condition. However, in any patient, once the bandages are in place, any new shortness of breath should prompt removal of the compression materials to alleviate the symptoms.
I have frequent attacks of cellulitis. Should I be on longterm antibiotics?
There are no prospective studies on this. However, in my clinical experience, lymphedema patients who experience more than 3 infectious episodes/year merit suppressive antibiotics. I usually recommend an initial trial of intermittent prophylactic antibiotics. If there is an unacceptable recurrence rate with this regimen, I do proceed to a low-dose, daily regimen of broad spectrum antibiotic.
This approach must be individually tailored and the benefits of antibiotic suppression have to be weighed against the risk of creating bacterial resistance.
I have been diagnosed with Edema. Is that the same as Lymphedema? Is Edema or Lymphedema a cancer?
Edema is the clinical term for swelling. Lymphedema is a type of edema that is caused by malfunction of the lymphatic system. Neither edema or lymphedema is a cancer, but cancer or its treatment can sometimes be a cause of lymphedema
I've had primary lymphedema in my left leg since 1967, my right leg since 2009, and my genitals since 2011 (quite the progression, huh?) Now that I've been shown CDT, wear the correct Juzo garments (Class IV and III), do my MLD daily, and stay fit I think my lymphedema is finally pretty well controlled (since 2009). That's all well and good and we can discuss the specifics of my condition when needed. Suffice it so say, I've dealt with lymphedema and numerous cellulitis infections over the years. Now I'm 65 and my annual physical blood work has in the past year shown significant changes in my kidney functions. I know lymph fluid is protein-rich, and I understand MLD moves this fluid into the blood system where I'm guessing it's cleared by the kidneys. Has there been any finding or research associating long-term primary lymphedema with degraded kidney functions? I'm rather desperate at this point as my creatinine serum levels are now at 2.1, up from 1.66 in October, 2013 and 1.17 in October, 2012. I am scheduled for an ultrasound on August 8 and have to wait until October 16 to see a nephrologist here in Denver. I would certainly appreciate any insight you can offer about any relationship between long-term lymphedema and kidney functions. Thank you much for your time.
Thank you for your detailed information and your question. The short answer is that there is no relationship between the two problems (I’m assuming that your history is correct and that this is primary lymphedema, with no history of heart disease).
A few years ago I had a cosmetic facial plastic surgery, followed by lymphatic drainage massages etc. for my body tends to adhere the scar tissue (it can be seen clearly on a scar from 2 cesarian child deliveries). Lately I've been feeling muscle like pain on shoulders and neck and maxilo-facial area that relieves with massage and finds its peak right on a scar behind the right ear. When I do it enough the thin skin breaks as if i had scratched myself and it drains a transparent to pinkish to bloody liquid. I'd like to have it checked. Based on my description/understanding/interpretation should I visit an immunologist? If so would you please refer me to one in Pleasanton CA 94566?
This has, by your description, no direct relationship to the lymphatic system. I would suggest that you start this evaluation with a dermatologist in your local community.
I can’t seem to find a physician that can diagnose lymphedema or one that seems to understand this outside of a disease caused by cancer or is congenital. Treatment is available (although in my home town, only for those that have cancer) in the form of physical therapy. I received therapy for lymphedema in wrist and arm, but I’m interested in understanding the symptoms and the association with autoimmune disease. Doesn’t seem that anyone is interested in investigating malfunctions of the lymphatic system and I would like to gain a better understanding of how a malfunction could possibly overlap the symptoms caused by Hashimoto’s. Any suggestions of physicians in the North Carolina area (yes I tried Duke, Chapel Hill and Bowman Gray)
I’m very sorry, but I am not aware of a physician in North Carolina that fits your description. The closest specialist to you, to my knowledge, is Dr. Paula Stewart in Murfreesboro, TN.
I have a 2 year old daughter that was diagnosed with lymphangiectasia at the age of 2 months. In the last month she has been hospitalized 2 times and had chest tubes put in to drain fluid from her lungs. We are currently at Texas Children's Hospital in Houston Tx. The Drs here have been trying to find a way to stop the fluid from draining around her lungs . She is currently on octreotide, Lasix, tpn, albumin infusion, and Igg infusions among other medicines. My question is... Where can I take her where Drs have experience in treating patients with this condition? Please help!!!
I believe that I discussed your case with Dr. Ferguson from NIH. I have already given him the information, but I recommended that you consider either Cincinnati Children’s Hospital or Boston Children’s Hospital.