Dr. Rockson is the Allan and Tina Neill Professor of Lymphatic Research and Medicine at Stanford University School of Medicine. After earning his medical degree from Duke University School of Medicine in Durham, North Carolina, Dr. Rockson completed his internship and residency training in internal medicine at the Peter Bent Brigham Hospital of Harvard Medical School, in Boston, Massachusetts, and fellowship training in the cardiac unit of Massachusetts General Hospital, Harvard Medical School. He is a fellow of the American College of Cardiology, American College of Angiology, and American College of Physicians, as well as a member of the International Society of Lymphology, American Society of Internal Medicine, the Society of Vascular Medicine and Biology, and the Paul Dudley White Society, among others. Dr. Rockson is the Director of the Stanford Center for Lymphatic and Venous Disorders and serves as Editor-in-Chief of Lymphatic Research and Biology.
I have been having leg swelling for over 4 months. It is just one leg. It started in the calf. But now my upper inner thigh is a little puffy. I recently had an ultrasound. I was told that is could be CVI. Can an ultrasound rule out lymph edema?
Ultrasound is not sensitive for the changes of lymphedema, but it is very accurate in diagnosing problems related to the veins.
My son is 2years old, he was diagnosed at 27weeks in utero with cystic fibrosis. Five months after he turned a year old he was diagnosed with intestinal lymphangiectasia. Both are so opposite. As of right now he is the first case we know of. Any thoughts on help?
I’m sorry to say that these two problems are both uncommon and, as far as I know, unrelated. They should each be addressed in full, but will require separate treatment strategies.
My 6 year old has Primary Intestinal Lymphangectasia, relatively mild, but often wakes with swollen eyelids. We manage this via low fat intake. However, she also wakes very swollen if crying the night before. How is this linked to her lymphatics? Could it signify anything? Thanks, Matt
If she has PIL, it may relate indirectly to her circulating levels of protein in the blood. Alternatively, her lymphatic defect may be more generalized than just in the intestine. This would need further evaluation.
Hello I am a 64 year old female. Noticed left arm and shoulder swollen two years ago. Had lymphoscintigraph with negative results.. arm swollen from shoulder upper chest and lower and upper arm. Have not had breast cancer or breast surgery. Negative mamo and breast mri. Please help!!!!!!
I’m so sorry, but it isn’t possible for me to help without examining you. Without risk factors for lymphedema, it is certainly much harder to explain. At this stage, if I examined you, unless I learned something specific to guide me, I would likely order an MRI of the region to examine the soft tissues to further clarify the structural basis of the swelling.
Have lymphadema, from ICD placement, in left arm & now chest & neck. How long before airway is completely blocked? Decreased ROM of neck because it closes my airway when I put chin to chest or hyperextend. Estimated time? ICD placement 2011 and needs replacement but question if adviseable.
In these circumstances, it is vital to determine if there is compromise of the central vein from the device which, in turn, creates the (lymph)edema. There may be reversibility to the problem. The ICD battery change would not have any impact on this situation, but the wires that pass through the central veins, which don’t need to be changed for the battery change, might be the source of the problem.
Hi. Both my father and sister have lymphedema. I don’t present any symptoms, I am 34 and I have 2 children. My eldest has very puffy feet what are the chances that she could have lymphedema and how could I get her tested? Thank you
It is certainly possible that she has inherited this tendency. She should be evaluated by her MD. If appropriate, she and other members of your family could have genetic testing for inherited forms of lymphedema.
Hello doctor: I have had chronic lymphedema in my left arm post breast cancer and double mastectomy 12 years ago. In the last month a severe stabbing pain has begun affecting the whole left arm. Seems like nerve pain. I don't see obvious signs of cellulitis. How to address?
You should certainly seek medical attention. A good physical exam will help to guide whatever additional testing might be required.
My client from Marshell Isle had cellulitis left leg , septic shock near death .He recovered but has LE in both legs. why? Dx with Parkinson, Sjogrens at same time. Can Sjogrens if linked to rheumatoid arthritis and lupus cause LE? No lymph damage but does have some venous disease.Thanks!
Your theory is reasonable, but I would be more concerned about the Parkinsonian drugs that can lead to lymphedema. In addition, the venous disease is always a potential culprit.
Can you refer me to a doctor in the NY are who has experience prescribing ketoprofen to Lymphedema patients. My doctor is interested but he can't find anyone to consult with on how to prescribe ketoprofen for Lymphedema. I want to try it out & see if it helps me.
I’‘m sorry - I don’t have a registry of physicians who might feel comfortable with this prescription. One piece of information—if you find an MD who will give you a prescription, our research dictates that you need a minimum of six months’ of continuous medication before you can decide if it has improved your condition.
my lymphedema has been in remission for the last 8 years and I just had an endoscopy and now my legs are swelling they are so big that I can hardly walk I have a flexitouch system but it isn't even touching it I don't know what else to do
I would potentially recommend a medical re-evaluation and a course of intensive physiotherapy
My husband had leukaemia and then a stem cell transplant, due to some complications and graft vs host disease he has lots of edema full body. To the point that he leaks/weeps. What can we suggest to our doctors to help with it? He does take Lasix. Thank you.
This problem is a direct consequence of the graft-vs-host disease, so controlling the edema will relate to the treatment that they use to treat the GVH disease.
Is it allowable to have a catheter placed in Femoral Artery for a brain angiogram if you have Lymphedema of the lower extremities? Would the better alternative be in the arm?
In theory, avoiding the leg would be preferable, but guiding the catheter to the carotid artery from the arm is more challenging. This is something that you can discuss with the doctor who will perform the procedure.
I have lupus and RA. In May 2018, I was diagnosed with lymphedema in my left breast/arm/lower pelvic area. My left arm goes numb/tingly and keep going up in size. After massage therapy in my chest my legs,feet,ankles swell. I have doctors says it's lymphedema and others say its not.
This certainly could be a form of lymphedema, but you might consult with an MD who has expertise in this area to confirm the diagnosis.
Hello, I have been recently diagnosed with upper limb lymphedema, not related to breast cancer or treatment. Can you tell me how you would proceed in finding the cause? Or would it automatically be classed as primary? Thank you
The cause would be assessed by a combination of a careful review of your overall medical status and, often, by imaging of the arm and chest.
Can Primary lymphedema begin to cause lung issues like minor dependent basilar atelectasis and then trace pleural effusions.
Yes, they can.
Dear Dr Rockson, I'm asked to compete in a sailing regatta in Texas (5 days, 6+ hours/day, open boat). I really want to go but temperatures will be 86/95 F. Is there a serious health risk to consider or just discomfort? I wear compression on both legs (secondary LE). Thx!
Heat can definitely be an aggravating factor in lymphedema, but these temperature ranges seem potentially manageable.
Hi, I have Lymphedema in both legs & I need full mouth teeth replacements. Is it safe or could this procedure complicate my Lymphedema? Thank you. LJ
There is no interaction between the dental implants and the lymphedema
How do I get a proper diagnosis? What test would be done to confrim Lymphedema? I have not had cancer, but have many other symptoms. My PCP is trying to get me into a specialist, but there are not many in our area.
A proper diagnosis is chiefly based on experience in recognizing the disease manifestations. If there is any doubt, we usually rely on imaging, which is most often a lymphoscintigram, performed in Nuclear Medicine.
I have hypothyroidism which I attributed to my bodies response to Acute EBV as I have NO antibodies for Graves or Hashimotos. I also have genetic factors - my entire maternal side is plagued with Thrombophlebitus, superficial Thrombophlebitus and phlebitis. I have tested for MTHFR and results are Heterozygote CT genotype. I have had swelling in my ankles off and on during last 10 years..not frequent..just spuratic. I have general water retention and have used fluid pills in the past but not presently. Most current issue is low iron and slightly elevated Platelet count..been to hematologist and going to have two IV Iron Infusions. I believe this is all connected and need some input on how I may approach this with my doctor and what I need to ask ..what doctor I need to see to look into a possible lymph connection. I need some direction and any input or suggestions are welcome. I fully understand this is not a medical diagnosis nor a medical protocal. Just looking for some expert input. Thank you so very much!
I wish that I could provide some more specific advice, but the medical presentation is complex. I believe that a thorough evaluation of the venous system is in order, particularly in light of the documented mutation. If that workup is negative, the lymphatics can be evaluated through lymphoscintigraphy.
Hello, I have Lymphadema officially diagnosed today but I have suffered for many years and it is genetic based I am told. My question is, has anyone that you know of ever cure themselves of this disorder? Not manage it, but cure it. Thank you
I am sorry to say that lymphedema is a chronic medical condition. It can be successfully treated and some can get to the point that they are unaware of a persistent problem, but cure is not possible at this time.
My 3 mo old turns blue/purple on all four extremities. Sometimes with bright red splotches. She has started swelling only on her right arm and leg with color change. These both come and go within minutes. Her doctors are unsure have you seen this before?
Yes, I have seen this, but the description is not very illuminating. I’m afraid that I can’t give you any more insight without more detailed information. If your baby is otherwise thriving and apparently healthy, it may be appropriate just to observe for now without any immediate evaluation.
Is it possible that when the lymphatic system is damaged and lymphedema goes unaddressed for years that it can manifest in an autoimmune disease such as arthritis? I’m 100% sure this is what has happened to me. Approximately 25 doctors/specialists have said this is impossible. No family history of arthritis.
This explanation seems very unlikely. However, rheumatoid arthritis is accompanied by abnormal lymphatic function in the affected joints. Just as a point of reference, the authoimmune diseases are not necessarily characteized by a family history of similar conditions.
Hi - I've had enlarged lymph nodes in my neck, jaw & back of head & high WBC for 2 years, CFS for multiple. Have been to every doctor and even had a PET scan. Was told normal fatty tisue and shape. Asking4 help and any guidance2 healing & answers.
As per Dr. Rockson
Lymph nodes can enlarge in response to recurrent episodes of infection or inflammation and the elevated WBC count suggests that this might be the cause. If there is still any question, you should see a hematologist
A week after a sore throat resolved I developed a swollen lymph node under right jaw. Should I wait or go see a Dr. right away. My grandmother died young of lymphoma. Should I wait or worry? I am 50 years old.
As per Dr. Rockson
Since you just had an infection, this would seem to be a normal response. I would wait for the lymph node to regress over the next few weeks; if it does not, it would be time to have it evaluated
Good morning, 35-year-old with generalized lymphangiomatosis, I have been on sirolimus therapy for 2 years now, it's a good medicine for this condition, I'm doing chest surgery after chylothorax. at the age of 7 years diagnose histologically after surgery and removal of multiple cysts in the small intestine.
Is there is some new development or some research in the treatment of lymphangiomatosis other than sirolimus rapamune;
I would say that sirolimus is the ‘latest and greatest’ for this condition right now. Research continues to try to improve on what we can accomplish with this medication.
Who can I see to confirm that I have lymphedema
I wish I could give you a reliable answer based upon your location. In general, internists, dermatologists, oncologists, vascular MDs, and physical medicine physicians, among many other specialties, should be knowledgeable about this condition.
What radiological study is ideal to evaluate a gradually worsening penile and scrotal lymphedema? No obvious illness, injury , infection , skin disorder or lymphadenopathy. Main complaint is interference in sexual activity. MRA with contrast of pelvis along with MR Lymphangiogram is suggested by one doctor.
That would be a wonderful starting place. Eventually a direct contrast lymphangiogram may be necessary.
I have had lymphedema since 2010, my Dr at time diagnosed me based solely on medical history of nodes removed and visible edema. My new Dr doesn't believe I even have it cause no edema present. Is there an official test that can be done?
The most useful test is a lymphoscintigram, performed in Nuclear Medicine.
I have a lymphedemic arm (18 lymph nodes removed in 1994). I consulted 2 orthopedic surgeons. I was diagnosed for a Reverse Shoulder Replacement in the same arm. Both were vague and differed on lymphedema treatment after surgery of my arm.
Can you comment on the effect of surgery on my lymphedema post operatively? Risk with surgery?
There is a risk that this surgery might make the lymphedema worse.
At the age of 19 my husband had Stage 3 Hodgkin lymphoma, they removed a lymph note from his collar area. Was put on 3 different types of chemo in his system. He is now 30, is it possible he could have Lymphatic without knowing? Thank you Tristin
Given the single lymph node removed and its location (and the duration since the surgery) the chance of lymphedema is exceedingly low. Also, in that location, it would be very hard not to know that there was a problem if lymphedema were present.
Is there a list of medications that can make lymphedema worse?
In general, any drug that stimulates fluid retention should be considered. My own research suggests that non-steroidal anti=inflammatory drugs (NSAIDs) should also be avoided, with the exception of ketoprofen. Anti-Parkinsonian drugs, in my experience, can also trigger lymphedema, so they certainly could make it worse, as can transplant rejection medications like sirolimus.
Thanks for your response; very helpful to eliminate that supposition by GP; urologist didn’t support it. How common is this condition in men and are there any studies/research on why it occurs, and long term prognosis? Any fertility implications?
Genital lymphedema is relatively much less common, in men and women, than involvement of the arms and legs. The causes are many and it is best to consider the differential diagnosis in the context of a specific patient. The long term prognosis is that the condition is irreversible and can progress with time, but there are no fertility implications.
I have Primary bilateral Lymphedema. In 2014, my Protein levels were too high. My IGM is currently 7.06. Is this connected to Lymphedema? I get tested every 6 months. They are keeping an eye on my serum viscosity and currently call it MGUS. Thanks!
It is difficult to say with limited information, but it is most likely that these are two unrelated medical problems.
Is there any association between Lymphoedema of the male genitalia diagnosed by a CT scan ( no infection, cancer, injury or other obvious cause), and inherited Hashimoto’s thyroid disease? We have a young adult family member with this issue and no medical conclusion as to why.
There is no immediately recognizable relationship between these two problems. When Hashimoto’s causes hypothyroidism, there can be an associated skin disorder,called myxedema, that might be confused with lymphedema, but this typically affects the legs rather than the genitalia.
Can lymphedema cause elevated liver enzymes? Radical hysterectomy Nov 2017, with removal of lymph nodes. Starting in May I started having some increased liver enzymes. I quit taking HRT, stopped taking turmeric, and they have decreased substantially. Just wondering if it could be related
There should be no association. The hormone replacement therapy would be a more likely culprit, or perhaps other issues, but lymphedema should not affect liver function.
Can go have this but not know you have it till your older because the symptoms come & go & don’t get chronic until then?
Yes, that can be a common pattern in lymphedema.
Can it be brought on from Chronic alcoholism?
There is no direct link between lymphedema and alcohol abuse. However, abuse of alcohol has many deleterious effects on the human body; one or more of these could lead to lymphedema as an indirect complication, so I couldn’t rule this out with certainty.
I had one cancerous testicle removed and then sever lymph nodes. I did receive chemo treatment but no radiation treatment. Is it possible I may have lymphatic diesease?
Given the history that you provide, there is a risk, but it is not a high one. If it were present, it would create external swelling that would be visible to you.
I’m 3 yrs clean from LN cancer.( skin cancer went into LN ) I had 18 removed from left armpit. 6 weeks of radiation. My oncologist said it’s ok to draw from that arm but put nothing in.( others say different) Also after 3yrs can I still get lymphedema ?
The literature is divided on the safety of blood draws in an arm at risk, but the safest strategy is to avoid any unnecessary punctures in that arm. Yes, lymphedema is still possible, but 90% of the cases will appear within the first two years after surgical lymph node removal.
Are there any other case reports or research of lymphedema developing after exposure to toxic mold with NO history cancer or surgery OR reports of lymphedema shifting to other body parts during treatment with a lymphatic pump (eg. sudden bilateral swelling in UE during treatment of LE and trunk?
I’m afraid that the medical literature doesn’t indicate a relationship between toxic mold and lymphedema.
My son had a stroke at 10mnths. Almost losing half the right side of his brain. Now at 15 also,fighting brain tumors all his life. I need more help,,his left hand very swollen and his legs and ankles and I am wondering if he has lymphedema??
I’m afraid that it isn’t possible to answer this question without a medical evaluation. It is certainly possible that this is lymphedema, but there may be other causes for the swelling.
I had a blood clot in my left leg. Since then my leg is 2 times the size of my right leg and swells up daily. I have asked doctors since it started they say it’s normal because of the blood clot.
This sounds very likely. However, you should be thoroughly evaluated to determine if there is reversibility to the situation.
I had a double mastectomy at 36 yrs old, feb 2018 with 4 lymph nodes removed on my right side. Can I do laser hair removal anywhere on my body? I’ve been to a Lymphedema ins and they do not see signs of Lymphedema.
The only region of your body that is at risk is the R arm breast and upper back. The rest of the body is fine. The risk of laser hair removal in the the regions at risk is not known.
Suspected I have lymphedema-right leg. symptoms: slight swelling in my right knee, tightness and sometimes painaround the knee, not in the joint, front shin pain when driving. How can I know it is not something else? No foot or ankle swelling. Had endometrial cancer hysterectomy 7 years ago.
The best way to be sure is to do lymphatic imaging. The ‘gold standard’ for clinical use is radionuclide lymphoscintigraphy.
My mother got severe lymphedema from flying after having a mastectomy. She has it all over her body. She gets massages, does the exercises, wear compression sleeves, has arm pumps and they are working on getting her a full body pump. But nothing has been working and I'm extremely scaredforher.Whatelsecanwedo?
I wish I could answer the question, but this will require a thorough medical evaluation. The mastectomy puts her at risk only for the arm and/or breast region that was treated, not the entire body. I suggest that you consult with your physician for a complete workup.
Can exposure to Agent Orange cause lymphedema? Has anybody done any research on this connection? I've had lymphedema since 2004. I was in the Navy during Vietnam. I know I was exposed to Agent Orange because all of the common causes didn't happen to me.
To my knowledge, there is no research that directly links Agent Orange to lymphatic damage, but it certainly is plausible to consider.
My mother had breast cancer in 1995 and a mastectomy, where they removed a few lymph nodes from under her arm on her left side. She's getting shoulder surgery next week (left rotator cuff) and is worried that this may leave her at a higher risk for getting lymphedema. Is this true?
At this late stage, her residual lymphedema risk is quite small, but not 0% It is true that this type of surgery could be a trigger for the lymphedema to emerge, but this is quite unlikely. It should, however, be considered in the risk/benefit analysis of the indications for the surgery.
Hi, I have Intestinal lymphatic hypoplatia, and I am just wondering if I can possibly reduce my swelling that comes every time I get my period, my albumin level sits at 13 and I am currently having monthly infutions, please help me Kind regards Jen
There are a number of potential treatments for this condition, but they would need to be administered and overseen by your physician. You should request a referral to a gastroenterologist who has some proficiency in this area.
What type of docor would i go to, to be diagnosed. I have been told that i have lymphodema but no test have been ran. Thank you, Jackie
Many doctors have the training to evaluate lymphedema. These would include specialists in internal medicine, cardiology, vascular medicine or surgery, oncology, dermatology, physical medicine, and others. It would be best if you ask when making the appointment whether the doctor would be comfortable evaluating you for possible lymphedema.
My pcp wrote me a prescription to try ketoprofen but I’m having a hard time finding it. I can not find 75mg tablets locally, finally found a pharmacy that could order one month supply of 25mg at double the cost of 75mg. Do you know why the 75mg are unavailable? Do the 200mg extended tablets have the same result as the 75mg 3x/day as they are available at a affordable price.
It is the decision of the generic manufacturer to stop making 75 mg. Unfortunately, this is the dosing that we studied in our work, so I can’t make a knowledgeable comment about the 200 mg preparation.
About 5 weeks ago I had a lymph node in my groin removed for a biopsy. The test came back negative for cancer and an infectious disease specialist has not provided any more clues. However it took up until this weak for the incision to completely close because there was a lot of lymph fluid leakage. He used a drain to keep it open. The decision was made to remove it and let the wound heal, which it did this week But now I am getting swelling in my ankle and calf on the biopsied leg. My questions are; 1) is there such a thing as a leak vs a blockage? 2)are you familiar with lymphatic embolization (https://doi.org/10.1007/s00270-016-1435-x) from the Cardiovascular and Interventional Radiology Journal ? 3) if so how do i go about looking into this? 4) is it too close to the surgery to know if this is lymphedema? (i.e. it might stop on it's own as part of the healing) Thank you for your time and continued success with your research and work.
It does sound as if there is a lymphatic problem and it is possible that the enlarged lymph node was a symptom of the underllying abnormality that has now been exacerbated by the surgical removal. Both lymphatic leak and blockage are possible explanations.
Lymphatic embolization is certainly an option in some circumstances, but more evaluation is probably appropriate before that step is taken. Please speak to your physicians about some imaging, ideally a CT scan and/or a lymphoscintigram
I started using the Flexitouch Plus with torso and both leg garments. I have used it 8 days. the first day no weight or measurement changes. 2nd day no measurement changes but I lost 4 lbs of fluid! Day 3 thru 8 no measurement or weight changes Gained back the 4 lbs lost on day 3 along with another 5 lbs. 9 lbs total in one day. I have also gotten very bad heartburn in this 8 days. Am I doing something wrong? Note: lymphedema caused by damage to abdominal nodes while having 2 neurotic fatty lumps removed.
I’m afraid that I can’t answer your question without evaluating your clinical situation. However, in general, the job of this device is not to dramatically reduce edema but, rather, to maintain and optimize the benefits of the other elements of treatment. Heartburn certainly could occur as a byproduct of the pressure effects of the device, or possibly if you are lying down to do treatments too soon after consuming food.
I am a 48 year old female who developed swelling in my right foot/ankle/calf in June of 2018 and was diagnosed with congenital Lymphedema by a Physiatrist at Rusk NYU in August. I am very active exercise daily and maintain a normal weight. I was sent for a Lymphedema study and began MLD. The Lymphedema study confirmed " No lymphatic drainage seen within the right lower extremity, compatible with lymphedema". That's it, left side normal. I asked my Doctor if he wanted to pursue further imaging to understand what the exact nature of my lymphatic problem is, and he said no. An MRL and ICG lymphangiography are only performed when considering surgery. Why? I have congenital lymphedema, maybe what's going on in my right leg is happening in my left, but it hasn't reached the point of manifesting as swelling yet, maybe we ought to know what's actually going on inside my body. Why aren't these test a mainstream requirement for all cases of Lymphedema?? which is is an umbrella term for several lymphatic disease processes. I find this baffling. I do not want to develop Lymphedema in my left leg or anywhere else in my body. I would consider surgery if I am a candidate but I haven't even completed my full decongestive therapy wrapping yet. They got me a pump, and the doctor is looking into trying out Ketaprofen. I guess I have a couple of questions, 1) why are MRL & ICG lymphangiography currently not standard tests a patient undergoes when diagnosed with Lymphedema? 2) In the onset of Lymphedema tarda why isn't more being done to make sure the disease doesn't manifest in more limbs 3) Given the laborious and ongoing nature of everything a patient has to do to keep their Lymphedema at bay, compression, wrapping, mld, would you consider surgery only a last resort if other methods prove ineffective? 4) What do you think of Ketaprofen? & how long do you think it might be before Bestatin would be approved? Even with the use of the medication, could surgery still be another concurrent approach to minimizing Lymphedema? 5) If you were me, what actions would you be taking at this point to treat your disease? Thanks
I"m sorry, but I would only be able to answer your questions as a response to a complete clinical evaluation.
I've had the lymph nodes in my abdomen and both groins removed because of cancer. Even with compression stockings and drainage massage therapy I can still only stand or walk for about 5 minutes. I've discovered during my recovery that I'm good for about 2 hours if I take a Percoset. Are there any non-opoid drugs that will let my body ignore the signals from my legs?
The only other drugs that I know that will potentially help in a setting like this are Tramadol, Lyrica, and Neurontin. This does not constitute a recommendation! Please ask your MD to refer you to a pain management specialty clinic to guide this decision.
Hi, Today I got a custom made compression sleeve to wear as a preventive when needed. I have Raynaud's and would like to know if this might cause problems with the sleeve. When I tried on the sleeve, my fingertips turned a little white. Thank you.
It is conceivable that wearing the sleeve could trigger the symptoms of Raynaud’s phenomenon. It might be worth examining whether the use of a gauntlet or glove with the sleeve improves the situation.
Dear Dr., My child (7 years old) has a pea size wart above his right knee,it changes color and the size is got bigger as the child developed. A doctor diagnosed it as lymphangioma circumscriptum. Could it grow to be more than one wart? or grow by size if not treated? Would you advise to go for surgery? thank you loads!
This lesion can grow larger, but that is not inevitable. There are various treatment options if removal is required, but, given the small size that you describe, this may not be necessary. It is reasonable to watch the lesion and to plan to intervene if there is evidence of enlargement to the point that the lesion becomes a problem.
I had a bilateral mastectomy in 2015 with 1 lymph node removed. I am interested in your recommendation regarding wearing a compression garment for a flight in patients with no symptoms of lymphedema. Is this necessary for preventive measures during air travel? Thank you in advance for your response.
Based on your description of your treatment, you are at very low baseline risk for the development of lymphedema. Compression sleeves for air travel and recommended as a feasible ‘risk reduction behavior’ but there is no firm evidence that the intervention is or is not successful. This would be an individual choice for you, to be governed by the fact that, compared to the standard breast cancer survivor, your calculated risk 1/5 to 1/10 of the quoted statistics for breast cancer.
My mother has had lymphedema for the past 4 years after lymph node resection due to ovarian cancer. She has had a variety of treatments in the past but there have been infection complications with the use of specific compression garments; hence, she i mostly receiving massage to keep it from getting too swollen. Do have an opinion on the recent use of CBD oil via tincture or balm to relieve the inflammation of lymphedema? Thank you.
The inflammation from lymphedema has a very specific biology, so that general antiinflammatory approaches may not be useful and, in some cases, can make things worse. The mechanism of CBD has not been studied in lymphedema, so I am afraid that I can’t give any knowledgeable advice.
Hello! I was diagnosed with PIL last year at age 35. A few months later, I injured my R arm and developed Lymphedema from my fingertips to my elbow. A year of garments, massage and a lymph pump with little improvement. I’m actually scheduled to have a lymphovenous bypass and node transfer in October. My Waldmann disease appears to be well controlled. A month on MCT diet and there was marked improvement when I underwent a double balloon enteroscopy. However a year later on the diet and my protein, albumin, lymph count and immunoglobulins are still low. My GI wants to refer me out. Except for mild BLE edema I had absolutely no GI symptoms at the time of my diagnosis. I’m having trouble finding literature on patients similar to me. It seems the more severe cases are what’s out there. My main question is am I at a greater risk for lymphoma being that I was diagnosed later in life. Is cancer inevitable? Thank you.
Your presentation is unusual, but not totally unexpected in some individuals. This condition has not direct relationship to cancer or to lymphoma. However, it does sound as if you have a generalized developmental disorder in the lymphatics that has presented later in life. If not already done, I do recommend a genetic analysis to see if a specific mutation can be identified. Also, it would be quite helpful for future research if you would enroll (on line) in the LE&RN; International Lymphatic Disease Registry.
My sister has a complex giant retroperitoneal cystic lymphangioma with very low protein and albumin. She needs any help she can get at this point. She is having testing done for losing protein in her stool right now. She has extreme swelling in her legs and feet. Is there someone there that she could ask questions or talk to? Any help would be greatly appreciated. Thank you, Stacey
This is a complex problem that can’t be assessed by internet or over the telephone. Your sister should be seen in a center that has a vascular anomalies program. If she is located close to Stanford, this is the sort of problem that we do evaluate here, but it requires review of records, examination, and, likely, additional tests.
Hello. I was diagnosed with secondary lymphodema in May 2018, following radical prostatectomy, lymph dissection (18 nodes left, 15 right) and radiothreapy. The L. affects both lower limbs, mons pubis and penis. I've been using compression garments, padding etc. and position has stabilised (Weight gain, approx 5 kg (out of 86kg), most of which i would guess is lymph). I seem to be shoving the weight around, but no overall weight loss. I have also suffered proctitis, which is where this gets interesting! For the past 6 days, i've been taking Prednisolone 5mg suppositories. My weight has dropped 3kg, and my L. has more or less vanished. The bones in my feet are clearly visible, ankles slim. Which suggests loss of liquid, and strongly suggests to me at least an inflammatory cause. I In the UK it's still all about the plumbing. Are there Researchers here that you're aware of who will take the idea of inflammation seriously, and can you give me a steer how i might make some waves?!
It’s a wonderful question, but I’m afraid there isn’t anyone who is pursuing this line of investigation. As you may know, my group is actively investigating inflammation and the potential of targeted anti-inflammatory therapy to reverse lymphedema. We’re making great progress, so I do hope that the work will be able to benefit you soon.
Dr Rockson I’ve had lymphedema in leg left only for two years after a kidney transplant. Now, I have three tears in knee Meniscus and need them surgerically repaired. Is this type of surgery a problem for me since I do have all the swelling that goes with lymphedema. I have been able to manage the lymphedema through therapy, manual massage, and pump compression. I worry about infections and possibly lymphedema in my leg worsenes after surgery. I am considerable pain and must do something. Does the surgery need to be performed by a surgeon who has had experience with lymphedema patients? Thank you Carolyn
This kind of surgery can certainly be done in the face of lymphedema in the same leg. It is true that the lymphedema increases the possibility of perioperative infection and difficulty with wound healing but, if the surgery is necessary, these risks can be managed. It is best to seek out a surgeon who feels comfortable operating in the setting lymphedema, but the surgeon needn’t have particular expertise with lymphedema.
My brother was diagnosed with stage 3 primary genetic lymph edema to his bilateral legs as a young adult and is being managed by the nearest specialist in Pittsburgh, PA - about 3 hours from his home - who he sees once a year. He has a history of Tetrology of Fallot at birth, a webbed neck, developmental delays, and malformations of the bones of his rib cage. His physician has said that he suspects he has Noonan's Syndrome, even though our parents were told that his genetic testing as an infant was normal. Is it possible that he has Noonan's even though genetic testing did not indicate this? We were told that he is not a candidate for a compression pump due to his cardiac history and is also not a candidate for surgery. We were told that his care must be managed with leg wrapping, massage, and elevation. The only local lymph edema therapist discharged him from under her care due to the fact that his lymph edema was not responding to massage. Because of this, a lot of burden has been placed on my mother (who lives with him). She was taught by a nurse to perform lymph massage and is now performing daily massages and leg wrapping at night for him. I live 2 hours away and my mother is getting older. She was recently diagnosed with lung disease. We are worried that when my mother is not available to do this for him, how his daily care will be managed. Are there other options that might help my brother manage his care independently? He has a job and is capable of caring for himself otherwise. In your experience, is it possible for him to massage and wrap his own legs or have home nursing do this? How do other people in his position manage their care?
You ask many questions that are difficult to answer without evaluating him. About Noonan’s syndrome—it is suspicious that he might have this. It is possible that the genetic test was not conclusive at the time that it was done, because the responsible mutations were identified more recently. These are the four genes that might harbor a mutation to cause Noonan syndrome -PTPN11, SOS1, RAF1 and KRAS. You can inquire whether these were specifically sequenced at the time.
The other questions that you ask would require a direct evaluation of your brother and of his medical condition.
i have a question about my nephew who had intestinal lymphagiectasia.you said me if he followd the diet he can be treated with injectable octreotide.now he follows the diet that he limited fat and he didn't eat diary and oils.just he eats meat by removing it's fat before cooking. 1.i want's to know if he used octreotide,can it affect his growth?While it's a growth hormone inhibitor and now he is 4 years old. 2.can you Explain the mechanism of this drug's effect؟ 3.i'm nutritionist and i have Hypothesis that Orlistat can be effective,what do you think? 4.i think now his situation can be Dangerous for his edema of the lungs and heart,how we can decrease it?
I’m sorry, your questions are too complex to answer in this forum. In brief, octreotide is safe in infants and children and does not retard growth. Orlistat would not be effective for this condition. The best way to decrease the danger is to use the most effective available therapies.
My husband has developed systemic lymphedema approx 3 - 4 years ago and it is slowly progressing. Kidney, liver and heart failure are ruled out together with cancer and lymph node removel due to major surgery. What kind of infections can cause systemic lymphedema? I also would like to know how can you effectively treat systemic lymphedema which also affects the abdomen, genitourinary system etc. We only can bandage the legs, thighs and arms. Sometimes we use compression garments like a pantyhose type garment but it is not strong enough for the leg edema and then the weeping will occur.
I’m afraid that your questions are too complex to answer simply in a forum such as this. The best answer will come from a thorough evaluation by a knowledgeable specialist.
My husband has systemic lymphedema. Nephrosis, cirrhosis, cardiosis, removal of lymph nodes due to major surgery, cancer and infection by parasites was ruled out. However, his blood tested positive for TB. Since his lymphedema could be only caused by an infection, we assumed that his lymphedema was caused by TB. He is also 85 % in afib, which also can be caused by TB. However, infectious disease clinic only diagnosed him with latent tb and treats him only as he would have latent tb, as they found no visual increased lymph nodes. When we ask what causes the systemic lymphedema, we only get the answer that they do not know. Have you ever seen in your practice a patient that had systemic lymphedema due to TB infection? I know you cannot diagnose over the email but I just simply want to know if you have encountered a case like that.
No, I have not encountered that situation and don’t think that it is likely to occur unless the TB has spread widely in the body. It does sound as if this is a latent infection and likely unrelated to the lymphedema.
Hi Dr I have a two week old baby girl with swollen feet, they have not decreased in size from birth and are non piton. I have to goto the hospital for results of blood investigations, think it is to check for turners and maybe Milroy Disease. The maternity unit were she was born in Belfast, Ireland - no one has seen this before. Her feet look exactly like the pictures from baby’s with Lymphedema. My question is, if she does have Lymphedema will it stay localised in feet? And also what investigations should be undertook to see exactly what is wrong and to what extent? Your help would be greatly appreciated.
It is important that you are referred to a pediatric geneticist who can help to determine the nature of the lymphedema. In some cases, it will remain localized, as in your baby, but it can also become more widespread as the baby grows.
I do hope that you can find a specialist who can help you to evaluate your baby.
I had a total right hip replacement surgery couple years ago or so, few months after I found out I have lymphedema in both lower legs, I had gotten gout in my left big toe like 6-8 months before my hip surgery then got gout in my right big toe 3 weeks after my hip surgery, is the causeof my lymphedema do to my hip surgery, before my hip surgery I had no health issue.
It is difficult to blame the lymphedema in both legs on the hip surgery which was only on your right leg. It seems appropriate to look for another explanation.
I was diagnosed with primary lymphedema in my left foot and ankle when I was 14 years old and in my right foot, ankle and calf when I was 29 years old. I am 30 years old now and considering pregnancy but am unsure about it because I have met others with primary lymphedema whose condition was worsened and remained worse during and after their pregnancy. I'm worried that if I become pregnant that my lymphedema will go from stage 1 to stage 2 or worse. Therefore I'm considering a surrogate. The lymphedema specialists I have worked with do not have any information on this topic and I've been unable to find information on the internet. My second concern is passing on lymphedema to my child(ren). Can you provide insight on this topic? Thank you, Kristie
These are dificult decisions. Lymphedema (primary or secondary) can certainly progress during or after pregnancy, but this unpredictable. Some types of primary lymphedema can be transmitted genetically (usually in 1/2 of the children conceved, statisticaly) if there is a culprit gene mutation identified. There are ~ 6 genes that can be screened through a blood test; insurance coverage may be available for this, but varies by third party payer.
I know someone with lymphedema in their lower legs. This person is bandaged and the edema is going down, but the weeping of lymphatic fluid continues. Do you have any suggestions for treatment.
I’m afraid that this question doesn’t contain much specific information for me to address. In general, failure to control the weeping (lymphorrhea, in medical terminology) means that the degree of compression is not adequate. Sometimes, there is an underlying infection or local skin problem that must be treated directly as well.
I have lymphedema praecox, onset at 14 years of age in the left leg, 50 years ago. At 19, I had surgery on my left leg at Joseph Kennedy Children's Hospital in the Boston area. After I reached my fifties, my right leg began swelling. I have worn compression stockings on both legs during every waking hour since the day my surgery was completely healed. I am 5' tall and weigh 170 lbs. I have not cooked with salt or added salt to my food since I was diagnosed with lymphedema. I have tried to watch my food intake, and in recent years I have taken my fitness even more seriously. For over 2 years I have been on Weight Watchers and lost 30 lbs in the first 6 months. Since then I have been stuck in a range from 168 to 175. For almost the same amount of time, I have been going to the gym at the YMCA to use the elliptical for 30 minutes 3 times a week. The other days I get on my recumbent exercise bike. On the weekends I do a 45 minute power walk, but on workdays I spend 25 minutes of my lunch hour walking. This past January my company joined the Virgin Pulse Global Challenge. Despite increasing my step count from less than 10,000 to averaging over 12,000, there was no weight change. Is there any hope of losing more weight? Or is my lymphedema stopping any more progress?
Lymphedema should not impede weight loss in any way. However, the rate of weight loss is indirectly influenced by the degree to which fat cells incorporate water after the energy that is contained within them is burned up by the body. Sustained weight loss requires patience for all of the plateaus that can occur.
Would you be willing to briefly summarize the findings of the clinical trial you mention is up for peer review? What were the conclusions and what are the hopeful type of applications?
I’m sorry, but discussing the results before publication would jeopardize the ability of the manuscript to be accepted. I do hope that the results will be publically available within a few short months.
+secondary stage 2-3 lymphedema; s/p modified radical hysterectomy 2016 w/ 30 lymph nodes removed -- CT of pelvis/abdomsn now recommended -- risks/benefits of contrast & increased fluid intake? Thank you.
I don’t believe that there is likely to be any lymphedema-related risk with this procedure, but a full answer would depend on a medical evaluation and knowledge of the entire context.
Hello! So, I'm looking for seemingly impossible answers. I was diagnosed with ovarian cancer in 2015. After surgery I developed a lymphocele that went undiagnosed for several months before apparently successful treatment with alcohol sclerosis. I now have scar tissue in that left leg/groin that I feel almost all of the time. I suppose I have neuropathy in both feet too. I had some slight swelling in left leg later in 2015 and saw a PT and obtained a flexitouch. I used it and compression clothing semi-regularly for a few months. I quit when the swelling didn't seem to change with or without. I run A LOT! I tend to swell in that left groin after very long runs and always have a small amount of baseline swelling. The increase usually goes away a few days after an event. Lately, I've developed pretty significant back pain usually on the right side and down that leg. I always have weird neuro symptoms in both legs. But, within the last 6 months I've noticed the back pain and a very heavy tired feeling in both legs, even at the start of an event. Resting or not resting doesn't seem to affect it. It seems to be getting worse. I hurt often in my entire trunk area with the worse being on my right. I wake at nite if I lie on either hip for very long and then it hurts to roll off that side. My feet always feel tired but now I feel tired at the start of a run like a normally would at the end of a run. All that was to say this....no one can explain what's going on. I don't know if its lymphedema and I need to manage it better (which I have done in the last 2 months but not really noticed much difference in that fatigued feeling), or if it's neuropathy that is getting worse, or if I have scar tissue that may be affecting the nerves in my back and trunk area. I also don't know who to go to for answers. I'm seeking direction. Anything you could offer would be great. Thanks for your time, and I'm sorry this was so rambling, Beth
I’m afraid that you’re describing a complex set of symptoms. I’m unable to say what the problem might be without a full evaluation. If you’re asking whether these symptoms might be associated with an underlying lymphedema, then, yes, that is certainly possible, but it would be best to be fully evaluated through a thorough examination with testing.
47 year old male with primary lymphedema in left foot/lower leg since puberty. I have developed gout in left toe and ankle. Is this complicated by the lymphedema and/or related? GP put me on indomethacin, which works when taking but gout returns within days after prescription in done. Thanks for your response.
Gout is not a complication of lymphedema, but when the gout flares, it can certainly have an adverse effect on the lymphedema.
Indomethacin is usually a form of initial treatment for gout to quell the intense inflammation. Longterm, patients typically require medical therapy to reduce the body stores of uric acid, which causes the gouty flareups.
Perhaps you should ask your doctor for a referral to a rheumatologist.
Will you upcoming study indicate that there may be therapeutic advantages to use Ketoprofen for long term lymphedema tarda? Left ankle and foot swelling since puberty has thickened the skin and created stiffness. Could I ask my GP to prescribe Ketoprofen with the hopes that it will, over time, help with this consequence of having lymphedema? Also, when will the study be published and when do you think we will get closer to having newer treatments for this disease?
I cannot make recommendation for your or your physician, but I can let you know that the study has been written up and submitted for peer review publication. Once it is published, it will be information that clinicians can use in approaching their patients.
We are it an exciting time when there are new potentials for treatment and I believe the prevailing treatments for lymphedema will become much more effective.
Greetings, I am 10 years out from Anal Cancer treatment which included radiation to surrounding lymph nodes in the groins and I have developed lymphedema I live in Colorado and I am wondering if living at high altitude worsens the condition. I have been considering a move and if this is the case, I would like to know what is the best climate for someone with lymphedema to live in? Is humidity bad for the condition? Thanks for your help and advise as I can't seem to find anything on the internet regarding living at high altitude and in a very dry climate.
Living at high altitude should have no impact since your body is acclimated to this environmental condition. The problem arises when there is a sudden, new exposure to high altitude but, in your case, this should not be a factor.
My husband has severe knee pain. He has pseudo-gout. Orthopaedic wants to injection to remove fluid and inject cortisone. His Lymphedema is very well controlled. We are very concerned about injections of any kind and cellulitis. If something goes wrong, we do not have any hospitals that would know what to do. And suggestions? Thank you. Helen
The decision about whether to remove fluid and/or inject cortisone should be made between your husband and his doctor. If it is medically indicated and appropriate, I believe that it can be done safely in a lymphedema leg. There is a risk that the lymphedema will flair, but the risk of cellulitis, if done properly, is almost nonexistent.
Dr. Rockson, I have been diagnosed with lymphedema of the left arm following a bilateral mastectomy and removal of two sentinel nodes on both sides. (Lymphedema resulted after IV's were in place to treat "CDiff" one month after the Breast surgery.) I wear a compression sleeve daily. I have several trips planned for this summer: AK, WA, and Europe. My concern centers around the flight to WA that was booked for me and I discovered includes FOUR layovers! (I assume high altitudes will not be reached during these brief interim flights.) Will the frequent change in pressure during the "ups and downs" of this flight exacerbate or worsen the lymphedema? Are direct flights less troublesome? What precautions should I take for all the flights? If needed, I can cancel that trip to Washington; the AK and European flights cannot be avoided. Thank you for your time and expertise.
The least troublesome flights are the most direct ones, but all flights engender problems, even if they are short, because of the 7000 ft altitude to which the cabin is pressurized. The best prophylactic measure is to wear a properly fitted compression sleeve (and glove if necessary) throughout each flight. The garment can be removed, if necessary, in between flights, but should be left in place while in the air.
Hi! I'm not a medical student, or related to medicine in any way. My grandma had been suffering from breast cancer, which thankfully had been cured. But she developed Lymphedema a couple of years ago, i think. Now the lymphedema causes a lot of swelling in her hand. She follows a lot of recommended medicine, food, and exercise habits, but nothing really helps. She says it burns constantly, and makes the quality of her life quite poor. It's quite heartbreaking that there is no cure for this condition. My question thus comes, after reading about what actually causes this: The lymph nodes, which I understood act like a pump, pump away the lymph fluid. If lymphedema is due to build up of this liquid (lymph) which is not cleared away, why not use a dialysis like machine to clear it away? Or what about artificial pumps? If the problem is the liquid remaining in the body, why not remove the fluid some way? Again, I would like to say that I have no real understanding of these body processes. I've trained as an engineer, and am quite far away from these subjects. So please, if someone could clear my ignorance on these issues, that'd be greatly appreciated! Thanks!
Dialysis is a treatment for kidney failure and is able to change the chemical composition of the body fluids and to remove excess fluid from the body. Lymphedema is not an alteration in either fluid composition or total volume, it is a maldistribution of fluid within segments of the body. The reason that fluid removal is not helpful is that it is continuously formed in all parts of the body, but its transit to the heart is slowed in the affected regions - in this case, the arm. The treatment for lymphedema requires improvement in lymph transit rates, not in removal from the body.
Hi Dr. Rockson: My mother has had lymphedema of the left leg for the past four years after having had surgery for ovarian cancer. She has had four bouts of cellulitis. Last one was over a year ago, after her last episode she was started on monthly Bicillin injection to prevent it. A year ago she cut herself mildly while shaving her leg, the cut healed slightly but she still has a mark/scar. This past weekend we took her to a dermatologist for some other spots she had on both legs that turned out to be seborrheic keratosis. The dermatologist wanted to biopsy the mark/scar on her lymphedema leg but we were concerned about it and we held off until a follow-up appt. Should there be a concern about her getting a biopsy which obviously entails cutting? Please let me know your thoughts. Thank you very much.
It is wise to be careful about such interventions, but they are not absolutely contraindicated. In fact, we use skin biopsy quite frequently in our lymphedema research. Since your mother is already on prophylactic antibiotics, the risk should be quite small. Local hygiene will be very important, of course.
I had lumpectomy in 2002 for IDC sentinel node biopsy (one node neg.) Estrogen Receptor Positive....Full course of Radiation therapy followed. Now in need of carpal tunnel surgery on that affected arm/hand. My questions are: 1) Will i get lymphedema having the testing (needles used i believe) and/or having the Carpal Tunnel surgery??? ....I have not had lymphedema at all. 2) So will this testing and surgery bring on lymphedema and if I don't have the surgery what,if any, lasting damage to nerve in my hand to shoulder be? and 3) Which is the worst of the two to live with?? I am thinking lymphedema would be because it could be life threatening at some point...Am I right? Thank you for your time and awaiting your answer soon, please.
There is a very small but distinct risk of triggering lymphedema, either from the testing (less) or from the surgery (more). Neither condition is life-threatening, but both carpal tunnel syndrome and lymphedema are otherwise lifelong, non-curable conditions. The end result of untreated CTS can be progressive numbness and possibly weakness of the hand, but not symptoms should appear above the wrist. CTS should be surgically corrected when the symptoms interfere with the activities of daily life, but the surgery is elective, not mandatory.
I had an RPLND and extensive lymph node dissection as I was diagnosed with stage 4 bladder cancer metastasized to the lymph nodes. Course of chemo completed and CT confirmed a complete response but that they needed a pathology response. Bladder was left in as I was told from a secondary doctor Cancer has left that area and 41 lymph nodes removed in the pelvic area. Negative pathology but consequences of pelvic,genital and upper right leg lymphedema. No post surgery help or guidance as there is no follow up treatment and very little recognition of this outcome. I have granulous pathology suggesting sarcoidosis in my lymph nodes so transfer of lymph nodes may not help. Any options for me as I am an active slender person in early 60’s. Compression and foam and running to therapists has become a full time job. Any help or suggestions? Would the flexitouch plus help in this area or increase the swelling. Thanks Ruth
As per Dr. Rockson
It is impossible to recommend specific therapeutic options for you without a full clinical evaluation. You ask about the Flexitouch: I cannot determine whether it is appropriate for you, but, in general, the device is helpful for individuals with both leg and pelvic/trunk lymphedema.
Dear Dr Rockson: An additional question re: meds for high blood pressure. My MD suggested using the thiazide diuretics for my hypertension, stating this might also help my lymphedema. I became concerned that over the long term the thiazide diuretic use for BP control would not be good for the tissues affected by lymphedema and stated this to him. My MD thus wonders what is better to use for lymphedema patients: the Thiazide diuretics class or the ARB/ACE Inhibitor class. I hope you can comment on this question, as I am concerned that using a diuretic type drug for raised BP over a long term would potentially be problematic for tissues affected by LE. Thank you again for your responses in your column, they are so important in the scenario of so few doctors understanding the complexity and implications of lymphedema.
Thank you for this important question. It most certainly is safe for lymphedema patients to use diuretics, as long as they understand that most causes of lymphedema are not responsive to the drugs. All drugs have potential side effects, so eliminating diuretics in lymphedema makes sense, because the side effects can be avoided. However, I can also say that the ARB/ACE class is completely neutral with regard to lymphedema, so it is certainly an attractive alternative.
After ten years of a lumpectomy and node removal, chemo and radiation I was told by 2 Doctors I had lymphedema in my arms. I saw a lymph therapist for 5 years did my exercises and wore Sleeves. Controlled all this time. Gradually it went to my legs and now midriff. I could feel the nodes move when I massaged them. My therapist measured me each time. It was always up and down but recently up mostly and I wore my leg and arm bands as well as a camisole night and day. It disappeared around my waist when she did it. My legs were jiggly and fat. A lot of my nodes are sore. Recently I had a Lymphoscintigram but he only did my legs. He told me I did not have Lymphedema and it was probably from my Fibromyalgia. If he only did my legs could it still be lymphedema in my upper body. I am confused. My OBGYN said it was L, my oncologist diagnosed me with it and my internist said seeping from my breast was from my lymphedema. What do you think?
The normal lymphoscintigram in the legs does not in any way exclude the possibility of lymphedema in the arms or the breast. In addition, only 60% of clinical lymphedema has a diagnostically negative lymphoscintigram. If the test is positive, it is confirmatory, but if it is negative, lymphedema can still be present clinically.
Hi Dr. Rockson, I am a PICC Team nurse that has been by physicians it's safe to place a PICC in ipsilateral arm, post mastectomy, that has had only one lymph node removed. Currently our policy says not to place if any have been removed. Can you provide guidance? Thank-you, Laurie
The risk of lymphedema after the sentinel node procedure is 1/4 of the risk associated with a modified radical procedure; however, by definition, there is risk and, if possible, this can be avoided by placing the PICC line in the contralateral limb.
I have recently had painful swelling in my face, arms both legs and feet as well as in the genital area along with redness. I have expressed my concerns to my primary care physician. She has run a panel of bloodwork and ruled out any blood clots or any organ damage that could be attributing to the swelling. She recommended taking Furosemide and wearing compression stockings, sadly this did not prove to be helpful. She then referred me to a vein specialist to have a doppler ultrasound. Thankfully there was no sign of anything wrong there. So I asked the vein doctor what he thought the reason for my swelling was and he told me that his best educated guess would be Lymphodema. The doctor then proceeded to hand me a pamphlet for the flexitouch system. I believe he did this due to the fact that I have mobility issues due to a spinal lipoma that is on my spinal cord. Upon leaving his office he told me to have my primary care physician to do the necessary paperwork in order for it to be submitted to my insurance company. When I asked my primary care physician if she could do this she gave me some pushback and said that she did not make the diagnosis and that I would have to talk to the vein specialist about it. In the vein specialists own words he said lymphodema was his best educated guess, so does that qualify as a diagnosis?. How do I determine if it is primary lymphodema or secondary lymphodema?. Please correct me if I'm wrong but isn't primary lymphodema considered something that happens on it's own?, and secondary lymphodema considered to be caused by another disease or condition?. I have never been diagnosed with cancer or had any lymph node removal or any trauma of any kind to the affected areas. Also, if between the two doctors if they are unwilling to make an official diagnosis then what specific type of doctor would I seek out to make this diagnosis?. I fell like a human hockey puck being slapped around the medical system . Are there any things I can do at home as far as stretching or exercises?. Please keep in mind I have very limited mobility. Any suggestions would be greatly appreciated. Thank you very much for your listening to me and for your time.
I am so sorry for your negative experiences. I can’t make a determination of your diagnosis by your description but, from what you have said, I would be surprised if this proved to be lymphedema. I suggest that you consult either with a skilled internist or, perhaps, a dermatologist to establish a correct diagnosis. The prescription of the Flexitouch product is premature, in my opinion.
Can lymphedema be resolved after having knee surgery(meniscus root repair) or will this become an ongoing issue? I am looking at possibly needing another surgery on the same knee and curious if once we get the swelling down if the process will occur again.
Unfortunately, lymphedema is typically not reversible, although it can be stabilized. However, other causes of perioperative swelling may certainly resolve.
Thank you for this opportunity to ask questions. I developed lymphedema after treatment for endometrial cancer in 2015. I have had 6 episodes of cellulitis in the last 8 months. I had LVA performed in December in hopes of reducing the cellulitis but it has not seemed to work. I have also been taking antibiotics since November and still get cellulitis so I am searching for solutions. I am wondering why the clinical trial on Ketoprofen was suspended. Thank you, Lisa
The clinical trial has been completed, not suspended. The results of the trial will be published later this year.
Dear Dr. Rockson, I have primary lymphedema in my right leg and have been using the Flexitouch system everyday for the past year. I have read mixed opinions on the use of a pump and how it can cause more damage to the lymphatics. Do you feel the Flexitouch touch is safe to use everyday? I’d really appreciate your expert opinion on this matter. Thank you.
Yes, there are many studies to support both the safety and efficacy of this treatment strategy.
Hi Dr Rockson: I am wondering if there are particular classes of drugs used for treating high blood pressure that are more likely than others to aggravate the swelling of lymphedema? Also wondering if there is evidence that indicates there may be a connection to atherosclerosis and lymphatic system functioning that is impaired? I am 60 with a high risk background with high blood pressure and cardiac disease (existence of atherosclerosis, atrial fibrillation and heart attacks in my parent and his 2 brothers). Despite a healthy lifestyle and exercise/weight control and efforts to manage lymphedema have recently realized my blood pressure is high and needs treating with medication. Concerned about aggravating swelling of the lymphedema. Thank you very much for this column!
Your questions are very insightful. In particular, the calcium channel blockers have the capacity to worsen edema. There is a relationship between lymphatic function and atherosclerosis; however, having lymphedema is not a risk factor for atherosclerosis, while hypertension definitely has that role and should be treated effectively.
My husband just had surgery for lung cancer and had the tumor removed and the middle lobe. His tumor was caught very early and was a T1b, N0, M0. He did have 10 lymph nodes removed. My question is do you ever see lymphedema with this? I am trying to advocate for a flexitouch pump if he is predisposed for lymphedema but everything I have read indicates it is very rare. He does have some swelling in the upper quadrant and under his arm but this is most likely post surgical swelling. Thank you for you time. Marian
This would not be a concern for lymphedema of the external body. When lymph problems arise in this setting, we would be looking for fluid collections in the spaces around the lung. There is no role for the Flexitouch here.
I have a patient who has severe, stage 2, lymphedema of both legs and mild to moderate presentation in the pelvic region, due to bilateral radical lymphectomy of the inguinal nodes and partial pelvic node removal to treat ovarian cancer. She is in remission and has a complete home regimen for management of her lymphedema at home (Flexitouch, great self care, appropriate garments, utilization of therapy for exacerbations). She has history of recurrent cellulitis which has reduced significantly with complete decongestive therapy. Recently she developed small papillomas in the upper thigh and lower groin which were biopsied and found to be fibrotic growths which I believe are a form of hyperkeratosis. They are uncomfortable and sometimes bleed when made to open due to clothing or compression wear. Her surgeon recommends surgical removal, Amlactin h as been noted as a possible option. She and I are both concerned about the potential for problems with healing if excision is involved but recognize her current status is not tolerable. Do you know of a better solution or have an opinion on this?
Thank you for your question. Unfortunately, this is an inexorable component of lymphedema for some patients (ISL Stage III). There is no adequate solution at this time. Surgical excision is very inadvisable unless unavoidable because, as you suggest, the likelihood of recurrent fibrotic reactions is high. There are no medications that are helpful here. Perhaps an attempt at laser therapy might yield some beneficial results.
Dear Dr. Rockson, I am a very active 63 year old woman with primary lymphedema tarda in my right leg. From mid April through mid May I have 3 trips requiring air travel. I will be leaving from California and flying to Hawaii, South Carolina, & New York. I’m very conscientious with the care of my lymphedema. I use the Flexitouch, compression stockings, and the Tribute at night. I plan to take all of these items with me. Will so much air travel over just one month cause my lymphedema to worsen? Should I be concerned about taking these three trips? I respect and appreciate your opinion. Thank you
I believe that you are taking all of the steps to ensure that air travel does not worsen your lymphedema. The concern about air travel relates to the exposure to the high altitude in the plane, not to the duration or frequency of the trips. As long as you have sufficient recovery time (1-2 days) between trips, this should not be a problem.
I just learned info on lymphedema. I had breast cancer n 1999 and had 17 lymph nodesremoved along with chemo and radiation. In 2010 they found a spot on my vocal chord and removed with radiation to follow . I have suffered with dry mouth, hoarse to no voice at all and difficulty . I yave breathing seen two ENT in last two years and been diagnosed with acid reflux and allergy's. II alsohave a sore shoulderconstantlyand a swollen right kneeall on the sameside as breast cancer (right) I now believemy problem could have to do with lymphedema. I live n Central Florida, am 63 yrs old , retired with FLblu insuranceand a $ 5000 deductible. I appreciateyour time and advice. Looking forward tohearing from you
There are many potential explanations for your symptoms, including, of course, lymphedema. I do believe that it would be appropriate to undergo further evaluation. Lymphatic imaging can be done for your arm and breast, but the dry mouth and hoarseness will require further evaluation by your ENT physicians.
Hi Dr and thanks for your attention. I have lymphedema in my left leg. The swelling is on the foot up to the ankles and Slightly higher. Three of my toes and some section of my foot have fibrosis and harder than other parts. Is it good to use laser therapy for this problem? Is it safe ? Is there any drug to solve this problem? thanks
There is some data that cold laser therapy may help the ‘fibrosis’ problem in lymphedema and it does appear to be safe. While there are no drugs currently available to solve this problem, there is active development and the hope that this can ultimately be addressed with medication.
I'm a breastfeeding mother and currently getting over a stomach virus and mastitis. Over the last couple of days, my lymphatic leg has been extremely achy. Can infections in other parts of the body affect lymphedema? I've had lymphedema for almost 20 years and I've never noticed this before. Is it normal or a cause for concern? Thank you!
Of course, I can’t say with certainty in your case, but this is a common pattern that we see in lymphedema.
In Nov 2015 I had a mastectomy for stage 3 BC, had 4 lymph out which showed cancer. I never had Chemo or radiation, chose to have Naturopathic treatments of Vit C and much more, still having some treatments, I am now 72 years of age, slim always ate healthily.I had an Ultrasound recently which shows the underarm lymph on the side of mastectomy are swollen, a biopsy is in the future, waiting for an MRI for more info right now. My question is should I have more lymph taken out ? I feel reluctant to do this. Mainly as I am concerned about getting Lymphedema. Recent tumor markers are remaining normal.
It is not appropriate for me to give specific medical advice here but, in general, the surgical biopsy of lymph nodes, even with the risk of cancer, has allowed us to cure what is otherwise a lethal disease. If your doctors are recommending additional tissue sampling, it most certainly the correct medical advice.
Dear Dr. Rockson I am a 65 year year old woman with secondary lymphedema. In my 30's I had a radical hysterectomy and pelvic lymph node removal for cervical cancer. As a result I developed very mild lymphedema in the left leg. Five years ago I had another 2 nodes removed from the right groin (results were non-cancerous). Since then I developed genital lymphedema, lymphorrhea and painful lymph blisters especially on the right labia. My Questions: 1. Are there treatments that could improve or reduce lymph blisters and leakage such as low level laser treatment, hyberbaric oxygen therapy or manuka honey? 2. Compression is an ongoing challenge for female genital lymphedema. Besides the use of Tena pads, Spanx, bicycle shorts and swell spots, are there other known options to increase compression in this area? 3. What type of specialists could I be seeing? Presently, I see an Infectious Disease Specialist to monitor my prophylactic medication, a Dermatologist for wound care and a nurse for monthly MLD treatments. Thank you for any information you can provide.
I’m sorry for your difficult medical situation. Unfortunately, you may be doing all that is feasible right now. None of the treatments that you suggest have any evidence to support their efficacy. The only additional interevention that may be helpful is intermittent pneumatic compression with a device that is designed to physiologically decompress the pelvic region. You are seeing all of the helpful medical specialists for your condition.
I am 72 years old. In 1995 I had left breast mastectomy with all 16 lymph nodes removed. I have recently been diagnosed with carpal tunnel in both wrists. I would prefer to get acupuncture but this involves needles in both arms. My cancer doctor says not a good idea. Chinese acupuncture doctor says needles not a problem. I have never had lymphedema and don't wish to tempt fate. Any and all comments would be appreciated. I have had one treatment with 2 needles in left arm last week with no problems. I need 5 to 8 treatments more to alleviate problems.What should I do?
There is a small but defined risk associated with the placement of acupuncture needles in an at-risk limb. There are acupuncture practitioners who might be willing to treat carpal tunnel without the use of the arm meridians. Otherwise, you will need to make a personal decision, waying risks and benefits.
My family has a seemingly unique occurrence of Lymphedema that may be caused by Noonan Syndrome. (I'm the youngest with Lymphedema, and the first genetically tested for Noonan's and both are present, leading us to believe Noonan is present in our family.) I have lived with Lymphedema my entire life, and so has my father and many other family members. But it seems as one gets older, living with Lymphedema gets significantly worse as far as dealing with the negative symptoms and side effects. My question is, would I (or any of my family members) be an appropriate candidate for the Lymph Node transplant procedure? I know that my type of Lymphedema is different from those who get it as a result of cancer treatments.
As per Dr. Rockson-
The lymphedema associated with Noonan’s syndrome is a form of primary lymphedema. Vascularized lymph node transfer surgery is successfully performed for various types of primary lymphedema and, therefore, it is a theoretical option. However, as with all forms of lymphedema, the outcome of the surgery can be variable, and some patients do not respond at all with an improvement.
I had an infection in may and in July I drove to Florida from pa. I noticed that all of a sudden my clothes were extremely uncomfortable and leaving marks on my body. I now can't wear jeans my bra or any of my clothing without extreme discomfort and purple marks all over my body. Could this be a lymphatic issue and if so who do I see for it.
This does not sound like the symptomatic evidence of a lymphatic problem. I suggest a thorough evaluation by your general physician.
I have lymphedema in both legs due to having to have knees replaced twice due to infection. I now have a couple of open areas in my left leg which seep lymph fluid and one in my right leg. This one is almost healed but not quite. The openings in my left leg do not seem hot, have red streaks or other symptoms but they do not heal.I cover them at night but leave them open during the day hoping they will dry up. Is there something more (or less) that I should be doing? Thanks
When weeping through the skin complicates lymphedema (lymphorrhea), the only way to resolve the problem is to use vigorous compression. Leaving the legs open during the day is actually allowing the problem to continue.
Hi Dr. Rockson. I have secondary lymphedema in my left leg . The edema is in my toes and bridge of my leg up to ankle and a little higher . I think there is some fibrosis in my toes and bridge of my leg and edema in this part are harder than other parts. Is it safe to use Laser LTU - 904 to cure the fibrosis? Can it cause more damage or edema in my leg? thanks.
The cold laser is apparently safe in lymphedema. It can help with some of this problem, but the effects are not permanent and it will need to be repeated. The laser is most effective for the relief of pain.
Hello Dr Rockson and thanks for your attention. Can you please advise me any supplement or drug or special diet to help the lymphedema? And...What is your opinion on PRP (Platelet-Rich Plasma) treatment for lymhedema? Thanks again
Unfortunately, none of the treatment approaches that you suggest have any evidence for an impact in lymphedema. If weight is not optimal, then pursuing a calore-restricted diet to correct this may improve lymphatic function. Bioflavenoid supplements are reported to be helpful, but there is no strong data to support this. If there is associated venous incompetence, supplements of grape seed extract and horse chestnut seed do help. There is no data regarding PRP and lymphedema.
Hello Dr Rockson and I wish you are well. Is daflon 500 mg pill efficient for lymphedema and what is the benefits of it? Thanks for your attention
There is a long experience with Daflon and similar agents in lymphedema. It is designed to address, indirectly, the inflammatory component of lymphedema. Unfortunately, it has limited utility.
I have a 93 year old friend whom is just recovering from pneumonia , she is very week but recovering . Should she be using the machine? Thank you in advance for your response Kelly
Once the infections has been completely treated with antibiotics, it should be safe to use the device. If the treatment causes any shortness of breath, the device should be removed.
I have lymphedema in my right arm and wear a compression sleeve every day. I also review tax returns that involves turning pages at length (repetitive motion). I get a pain in my lower arm about midway up. The pain is sometimes severe and radiates down into my first two fingers. It has been going on for years and is probably the most pain that I experience from multiple sources. Recently, while exploring what is causing the pain my Doctor commented that there was (presumably) lymph fluid by the nerve in my arm. Is it possible to drain the fluid by the nerve to get some relief? I get lymphatic massage about every two weeks which helps with the surface lymph system but I have heard there is a deeper lymph system. My massage therapists has started trying to work that area with a deeper pressure but limited results so far. My life would be so much better if I could get some relief from this arm pain. I have carpel tunnel in the left hand so between the two hands I have poor hand function. I live in an area that has very little resources for lymphedema. Thank-you for your time and consideration. I look forward to your opinion.
I am not convinced that the pain is necessarily lymphedema-related, although it may be a by-product of the compression garment. I don’t recommend deep massage because it may aggravate the lymphedema. Perhaps you could consider a change of garment and, if necessary, a custom-fitted sleeve. If these things don’t work, I would consider a full neurological workup, including nerve conduction velocities.
Hello! I have been working with GI doctors since my teenage years to help with treatment of many different GI symptoms. Last winter, I had a particularly difficult time with diarrhea, nausea, distension, and abdominal pain and started seeing a new GI as an adult. I tested positive for SIBO (small intestinal bacterial overgrowth) which was treated with antibiotics and the low FODMAP diet, but was still dealing with some symptoms. My GI follwed with an endoscopy, where he found dilated lacteals in my duodenum. In the report from this test, he described this as “suspicious for celiac disease” and that it was biopsied. The biopsy came back negative for celiac, and my GI left it at that. I was interested to see what would come up if I searched “dilated lacteals,” and everything online has pointed pretty directly to an intestinal lymphatic disorder. One resource even connected this disease with SIBO and other similar symptoms to mine, which I found interesting. I wanted to know if it possible that the dilated lacteals really mean nothing if they are not indicative of celiac disease, or should I be concerned and consider seeing a specialist? Would this be something I continue to work with a GI for or is there a kind of specialist for lymphatic issues that I can consult? Thank you for your time!
If this is an intestinal lymphatic disorder, it would reflect the presence of intestinal lymphangiectasia. The clinical manifestation is protein-losing enteropathy, which should be detected through a 24 hour stool collection for alpha-1 antitrypsin. Your gastroenterologist should be able to organize this.
I am a 44 year old male, I'm 5'10 and currently weigh 430lbs with bilateral primary lymphedema of the legs. The condition started in the mid 90s but was not correctly diagnosed until about 2008 or so, and by that time it had already begun to limit my mobility. In the last year I have lost over 200lbs and last week I had a SIPS procedure for weight loss. I also have slightly elevated BP that is well controlled, and atrial flutter/fibrillation (the test results are not consistent on the diagnosis for some reason.) My issue is I have on my right, inner leg, just above the knee a quite large lymphedema lobule that I can not seem to get to respond to treatment (due to it's size and location it's hard to get wrapped, weight loss so far hasn't had a large effect, and my Flexitouch helps but it just re-swells as soon as my treatment is done.) I am wondering if removing it surgically would be a good option, or if the potential loss of lymphe nodes (if any) would negate any long-term benefits by just causing new, worse swelling after surgery. I have a similar, smaller lobule on my left leg as well and would like to have it removed if possible too. The LE therapist I see here has never seen anybody have a lobule removed, and so has no idea of the effectiveness of this kind of surgery. As it is, I would have a greatly improved quality of life by having the removed, but I am concerned about the possible long term effects. My walking is greatly limited by it because of how far apart I have to have my feet just to make room for it, it is also very pendulous so I still have to use a walker just to maintain my balance. I want to return to work, but I don't see how that will be possible with these lobules even with the weight loss I have had/am having.
The problem that you are describing is sometimes called ‘massive localized lymphedema’ or pseudosarcomatous fibromatosis. These lesions usually need to be removed surgically, if they are not responding to weight loss/lymphedema therapy and they impede mobility. You have to find a surgeon who is comfortable with this kind of debulking surgery.
Hello Dr Rockson: Thank you for being available for these questions. I have left leg lymphedema for 10 yrs now after my melanoma was sadly misdiagnosed, spread to lymph nodes and then required a left inguinal node basin excision. My lymphedema is well controlled as I wear compression garments always, and exercise and am attentive to all the very tedious details of physical therapy to manage this. I am in good fitness with very strong muscles that aid my lymphatic circulation, as I exercise throughout the week and not overweight. My lymphedema is of my foot, mildly in my calf around a skin graft and mostly in my thigh, left hip and buttock and low back. Unfortunately I am still prone to cellulitis on average once a year that makes me systemically sick, but responds well to oral antibiotics. I have very terrible intermittent bouts with sacroiliac pain that my physio has thought was related to gait imbalance that is pulling on the right SI joint, but now the left SI joint is involved to a lesser extent. Careful exercise really does help to relieve that pain, because I believe I am moving fluid around. I began having left groin pain as well, had an abdominal and pelvic CT which revealed no abdominal abnormality, but a left proximal femur enchondroma, and MRI has ruled out a sarcoma, but the MRI reveals left hip degenerative changes consisting of full depth cartilage loss of the acetabulum, numerous large subchondral cysts and bone marrow edema. Yikes!! So I have four questions: 1) can joints in the vicinity of tissues that may are chronically inflamed because of a regional chronic lymphedema also start down an inflammatory pathway due to the presence of inflammatory cytokines or other byproducts of inflammation? 2)I'm also curious about whether MRI noted marrow edema could actually by my lymphedema fluid? (probably not I guess, but I do wonder), 3) How do lymphedema patients typically do after hip replacements with regards to their lymphedema and worsening swelling, and is it a bad idea to have one? 4) Are there any other medications besides Tylenol Arthritis that can be used for joint pain in lymphedema patients? Sorry for all the questions, but there are no doctors around my area that seem to understand the profound implications for a lymphedema patient with the sorts of issues I am experiencing at this time. Thank you again for sharing your knowledge with us all!
I’m happy to answer your questions:
1. I don’t believe that lymphedema can initiate or perpetuate a specific joint inflammation (but joint problems can aggravate lymphedema)
2. yes, the marrow edema can be related to the lymphedema
3. lymphedema patients do well after hip replacement, when the surgery is properly indicated and performed
4. any anti-inflammatory can be used in principle, but with the knowledge that most, other than tylenol, can have an adverse effect on the lymphedema.
Hello, I have LE in my left leg only for past 18 years. Within the last year, I have noticed more frequent knee pain, particularly after engaging in an activity that uses the knee a lot (like climbing up/down a ladder). Also, if I step or slightly rotate my body, sometimes my knee feels like it "moved" or my leg feels like it will give out and I get a sharp pain in the knee that goes away quickly. I went to the orthopedic, who took an x-ray and manipulated my leg, and does not think anything is torn. He said the only reason to do an MRI is if I intended to have surgery, which he does not recommend since the manipulation does not result in excruciating pain. I have always wondered if the accumulation of lymph fluid gets in or under the knee cap or somehow stretched the tendons or ligaments, and could be the result of the knee "movement" that I feel? He said it is just arthritis. I have not been successful using a stabilizing knee brace as it does not work well with the size of my thigh or knee due to the LE. It wants to slide down as well. Just curious if a second opinion is needed and if an orthopedic is the right person to see?
I believe that your thought about a second opinion is sound. The knee may have sustained chronic damage because of changes in gait association with lymphedema, but the only way to determine the nature of the damage is to define the anatomy, which is through MRI. Surgery may or may not be indicated, but the first step is accurate diagnosis.
I have a question about why lymphedema patients are always thirsty? I am a secondary-lymphedema patient and I was discussing some of my issues that I experience with a mental health/social work professional who was born with primary-lymphedema and she said she is thirsty all the time too, that quite often you will see her with one if not two drinks. Just curious. Thanks, JEH
I would not say that this is a universal symptom of lymphedema, but a likely explanation is that a larger component of the body fluids is outside of the circulation in lymphedema; when the vascular space is ‘contracted’, the brain senses the need to increase fluid intake.
My son was born with a lymphatic malformation that wraps around his right abdomen, overlaying this is a vascular malformation. Over the last few years he has had portions of his malformation fill with fluid usually at the same time that he is experiencing a cold or similar illnesses. In that became infected and was surgically removed which led to his diagnosis. My question that hasn't been answered is at what point do you start to worry or seek medical advice? We currently have only seen a pediatric surgeon, pediatric geneticists and general pediatrician. We are located in SD and have very limited physician options. What type of doctor has the "best specialty" to visit with or to have these areas checked out?
As in any chronic medical problem, your concern should raise when there are new or worsening symptoms. Routine surveillance will probably require repeat imaging from time to time, but not necessarily. I believe that your pediatrician and surgeon are very well equipped to monitor your son. If you haven’t already, please enroll in the International Lymphedema and LYmphatic Disease Registry on behalf of your son: this is the best way to empower more MDs and scientists to understand more about his problem.
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.