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Sheila H. Ridner, PhD, RN, FAAN, is the Martha Rivers Ingram Professor of Nursing at Vanderbilt University School of Nursing in Nashville, TN. She is an internationally recognized scientist and expert in the field of lymphedema and lymphatic research.
I developed lymphadema after back surgery. This problem is on my left side, not on my arms or legs .Hopefully, one of you may be able to point me to someone who will be able to help.
Have you reported this to your surgeon? If not, that would be the first place to start.
If you have done that and it is thought this is lymphedema, the you should locate a lymphedema therapist near you for an assessment in order to put together a plan of treatment.
After breast and node removal, Im experiencing lymphedema on both sides of my neck.Is this normal?
It is possible for patients to swell in the neck, dependent upon where the nodes were removed, radiation etc., however you need to make sure nothing else is going on . Please make you treating physician aware of this immediately.
How can I manage the lymphedema in my face, neck?
Traditional lymphedema therapy provided by a professional trained in treatment of the head and neck can be helpful to reduce swelling, but daily at-home self-care, including self-massage, is needed to maintain any gains from the professional treatment. Many patients find that seeing a therapist for initial volume reduction and instructions on how to conduct self-care is very helpful. Some patients are also finding that using an advanced pneumatic compression device at home is a real assist to managing the swelling. A lymphedema therapist, or your primary care MD can help you determine if such a device might be of assistance to you. It is also important to maintain a good level of physical fitness and a healthy diet.
Hi, I have lymphedema of the neck as result of RT for Adenoid cystic carcinoma in the summer of 2019. Lymphedema started 2 months after and is inner and outer. My voice gets hoarse and tired and gums get ‘doughy’ and swollen. What do I need to do?
It is very important that you see a lymphedema therapist who has had additional training in treating head and neck lymphedema very soon. This person can help with immediate treatment and a longer term plan of self- care. Self-care is critical to managing this condition for the long-term. Some patients have found that Yoga (not hot yoga) makes them feel better,especially the breathing components of yoga. Other are also incorporating an advanced compression pump into their daily self-care after working with a trained lympmhedema therapist.
My great grandfather, grandmother and father were said to have inherited lymphedema after the age of fifty. They all had heart problems but I don't. I have neuropathy. I need to find a doctor that can see if I have inherited lymphedema or something else is going on with me.
Who can someone see who is proficient with diagnosis and treatment of chest lymphadema / disruption of chest lymph drainage related to chest surgery and resulting scars?
I would look for a physical therapist who is also certified as a lymphedema therapist.
I was diagnosed about 2 years ago with abdominal lymphedema, after a laparoscopic hysterectomy and then having post op abdominal infection and 3 months later distal cuff ruptured. The area in which I live doesn’t have many specialists regarding lymphedema and I am wanting further information on how this happened.
Have you spoken with your surgeon about this? Contacting the person who did the surgery is usually the place to start when trying to determine potential reasons for changes in your body after surgery. If there is no lymphedema expert near you, you might consider seeing a gynecologist for an evaluation. A physical examination and testing is likely needed to answer your question.
I have lipo-lymphedema in my legs. I have been through CDT and have day and night garments that I wear continually. I exercise and do pool work. Recently I have developed horrible lower back pain. Is this linked to Lymphedema? Treatment suggestions?
Many things other than lymphedema can cause lower back pain and the cause dictates the treatment. Please see your primary care doctor to determine what may be causing the pain and to obtain specific treatment recommendations.
My brother has edema leg sores that will not heal, he is a large man and he will not wear compression socks, is there anything else that can be done to heal these sores? I'm worried.
If your brother has not seen a wound care specialist (doctor) I would suggest that he see one for specific recommendations. It will be very important for him to follow directions from the specialist.
I've heard far-infrared light therapy can benefit lymphedema patients when used on regularly effected areas. I have lower extremity lymphedema in my right leg and have had lymph transfer and bypass. I've read numerous studies such as below. Do you advise and if so, how often? Thank you. https://www.ncbi.nlm.nih.gov/pubmed/28434105 https://www.sciencedirect.com/science/article/pii/S1011134417301665
Hi, Unfortunately I am not personally familiar with far-infrared light. You should be able to email the corresponding author from some of the studies and ask them.
I’ve had lymphedema since I’m 25 and I’m now 62. I’ve managed to keep it under control until the last three years where I’m now in stage three and have gained a lot of weight and my mobility has been significantly impaired. Will weight loss help in my mobility/condition.
Maintaining a healthy body weight is very important, not just for lymphedema, but for your overall health. I cannot tell from your question if the weight is related to an overall increase in body, or fluid etc.
Regardless, please see your primary care provider to discuss your concerns so a treatment plan can determined. A referral to a dietitian for nutritional education might also be helpful to you. I will add that if your health allows, some people find that swimming can often be done, when walking etc. is difficult.
I don't have lymphedema. I have nodes removed on both sides breast cancer. Where do I have iv and bp checks? Five years ago
In the case of node removal and breast surgery on both sides, there is no clear answer to this question. I usually ask if one side had had more “treatment” than the other and suggest if that is true you use the side with the least amount of treatment. If the “treatment” was equal to both sides the next step is to determine if you are easier to stick and get vein access in one arm or the other. If one side is easier to get blood from , then you could use it to decrease the number of sticks etc. If there are no differences between your arms, then ask that the smallest size needed that can be used to draw blood or give fluids etc. be used and try to not have tourniquets on any longer than absolutely necessary.
Hello, I am diagnosed with stage 1 arm lymph-edema, and I follow CDT therapy. Is it safe and/or good for me to start swimming in a pool? Water temperature will be about 29-30 degrees (Celsius). Is brisk walking harmful ( 5.5km in an hour) for this condition? Thank you Athina
In general, exercise is good for the lymphatics as it helps move fluid, but it is important to not over do it. Listen to your body and if it says you are overdoing it, reduce the level or intensity of the exercise.
Swimming is recommended by some therapists, as long as you don’t wear compression garments in the water and stay out of hot water. When walking, wear your sleeve.
Consult with your LE therapist who knows you best for specific recommendations for you.
I’m 53. My first onset was in 1996 on my right foot. However, now My lymphadema is dominate on my left side of the body. Swelling goes down overnight. And it’s intensity is triggered mostly by the carbs that I eat. Why? What type Dr should I see?
I do not know why carbs might be a trigger for you, but since you know they are it would be very important to get with a dietitian who can help you learn about low-carb diets etc. Your primary care doctor should be able to assist you with this.
4 years ago I found out that I had a swelling on my right foot. I was diagnosed with lymphedema preacox. There’s a lot ofpain on my knees & it’s hard to walk sometimes. I was told to just leave it but elevate it sometimes. What else can I do?
Things change over time.
I would suggest you see a certified lymphedema therapist for an evaluation and treatment recommendations.
I need help don’t know where to turn? What doctor to see? I’m so swollen can’t walk and I’m up to 363 pounds and my husband had to retire to take care of me ! What kind of doctor do I need? Family doctor said I’m overweight and I needbariaticsurgery
I am sorry to hear of your difficulties.
Many things can cause swelling. Unfortunately, it is very difficult to tell what is going on based upon your email and having never seen you. Has your family doctor given you a diagnosis of lymphedema? Or referred you to a bariatric surgery center for a consult? If the doctor who sees you has referred you to a bariatric center, then perhaps you should go there for a consult. Most of those centers conduct a thorough medical work up prior to making any recommendations. You are not agreeing to surgery just by going there, so given the limited information I would suggest you follow-up on your doctors recommendation.
I had breast cancer surgery and developed right arm swelling shortly after; i had MLD for several weeks and i started using a flexitouch compression pump and about a week later developed swelling in my right neck and face; ultrasound negative for clot; could the neck/swelling be from lymphedema?
Swelling can at times extend from arms to other parts of the body. Anytime you have changes in patterns of swelling you need to see your doctor, which apparently you have, so glad to hear a clot was ruled out for you.
Given what you say is the location of the swelling, if you have any possible dental concerns, I would also get a dental check-up, just to make sure you do not have any oral health concerns.
You should see your lymphedema therapist when the swelling changes too, as you may need additional professional treatment and new or modified self-care instructions.
25 yr ago had breast cancer and many lymph nodes removed. Then chemo radiation & 5 years later latissimus flap reconstruction. I have NOT had lymphedema. Now broken neck of radial head that is not healing; surgery recommended to replace the bone w/metal. Is lymphedema possible? I am concerned.
I am very sorry you are having this problem and need surgery.
I do not know how extensive your surgery will be or if it might require “cuts” that overlap with your previous surgical sites. Thus the risk is hard to determine. Will you have physical therapy after the surgery? You may want to consider having your arm measured before surgery and then have it measured after you have had time to heal from the surgery. A PT could do this for you. That way you would know if you were running into problems.
I had chemo/radiation/lumpectomy w/ 3 nodes removed in 2014-15. All clean. Dx was invasive ductal carcinoma stg 1. I experienced swelling since chemo above my clavicles to this day. It’s now in my hands between my knuckles. Sometimes it’s worse than other days. Could this be lymphodema?
It might be, but you will need to see someone who can actually examine you to know for sure as other things can cause swelling. Are you near a lymphedema therapist or PT? I would encourage you to see someone soon.
My right thigh is 2" bigger than my left. It's painful. I have MBC and had a rod and radiation on my spine and femur. The Dr now thinks the swelling/pain is permanent. No one has said lymphedema. Who can I see to have it evaluated? I think it is.
I do not know where you live, but you should see a lymphedema therapist for an evaluation. Go to this link at LE&RN;‘s website for information about finding a therapist.
Would the gradient pneumatic pump better mimic MLD than a Basic 8-chamber? I understand Basic Pumps work in one direction --fingertips to armpit-- therefore "dumping" lymph fluid without actually removing it in a safe fashion. Could this worsen lymphedema? (Left arm/chest/back Stage 1 Lymphedema from mastectomy.)
I am not an expert in all pumps, but more advanced pneumatic pumps are generally believed to more closely replicate techniques used by lymphedeama therapists than the basic pumps.
When using pumps it is important to work with a lymphedema therapist to make sure the results are as hoped.
Hello! I was recently diagnosed with Lymphedema in my left leg. And for the past 11 weeks I'm having swelling in my right arm pit. I got an ultrasound and they said "my nodes weren't swollen" but I'm wondering if my Lymphedema can "jump" like that? And start to affectother
Lymphedema doesn’t migrate in that manner, but it would depend on the underlying cause—if the disease affects multiple regions of the body, it can appear at different times.
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.
My right leg is swollen on and off. Went through a lot of tests and there was no specific result. Was only told it could be mild lymphedema. I'm not sure what is wrong.
This must be very frustrating for you. If you have not seen a lymphedema therapist, you might want to see one and get their opinion on your swelling and how you might manage it.
I had anterior fusion and disectomy of c5/c6 in 2014 at age 35. Doctor believe the surgeon damaged my lymph system. All that helps is laying as flat as possible and ice. My neck, chin, and rtside of my face swell along w chronic migraine/pain and weakness. Whatcan ido?
I would suggest you meet with your primary care doctor and and ask for a referral to a lymphedema therapist in your area for an assessment. This should facilitate determining if you have lymphedema and development of an individualized plan of treatment. No two patients are the same and that is why it is very important to have someone examine you and determine the next step.
I have not had surgery in over 15 years. My legs and feet are swelled I out on some weight and it’s very hard for me to bend down or kneal. Do I need to be concerned?
I believe you should see you doctor for an evaluation of your legs and feet. Anytime you have problems moving around because of your swelling you need to see a doctor. There may not be anything to worry about, but that can only be determined by a physical examination, which cannot be done via the internet. I wish you all the best.
I have good reason for lymphedema in my right leg, broken bones. My left leg has also swollen as well as both feet, but the left leg swelling doesn't have any reason that I know of. Does the disease keep spreading throughout the body like that? What's the prognosis?
Thank you for your questions. Have you seen a healthcare professional for an examination and work-up for your swelling? It is possible to have both lymphedema and other conditions that might cause swelling and it is very important to determine the type of swelling, as treatment differs. Lymphedema itself is a progressive condition that will worsen over time if you do not have treatment and conduct regular-care. If you do not have a certified lymphedema therapist working with you to manage your condition, it is very important that you find one and work with them. I wish you the best.
I don’t find a lot of info for someone who runs like me. I had surgery for ovarian cancer 3 years ago. Mostly mild lymphedema since then in my left leg. It’s not been consistent over the time so I’ve not been consistent with treatment. I have a pump and have been fitted for compression wear. I rarely use either. I tend to swell if I run far (over 10 miles). It usually seems to resolve over a few days although it’s not resolving as quickly as before. My biggest question is about fatigue. I have a heavy “tired” feeling in my legs some days as soon as I step out the door. I feel like I’ve run before I ever leave. It doesn’t seem to matter how many rest days I have either. Is this normal? Is there anything I can do about it. Running defines me as a person but it’s getting incredibly harder just to get out the door when I know my legs are going to feel like lead from the get-go. I hope u can help. I’m losing my identity. Thanks so much
In general, the most important thing a person with lymphedema can do to help reduce the negative impact it may on their life is to work with a trained lymphedema therapist and consistently perform self-care as recommended by that therapist (wear garments, etc).
Many people with lymphedema are very physically active. Exercise is good for you, but it needs to be done with lymphedema management in mind. It does not sound like your current approach to running is working well for you and I am very sorry. I would suggest that you see your primary care physician to make sure there is nothing else causing your fatigue etc.. If medically cleared, then I believe you would benefit from seeing a certified lymphedema therapist for an assessment and that you should work with that person to develop 1) a plan for self-care and 2) an approach to “retrain” you body to run. and work with the therapist to assess your capacity overtime. You may have to start slowly and work your way up, but the end if you do this, you may begin to feel more in control and more like yourself. I do not know where you live, but if there is a lymphedema support group in your area, you may also find that helpful. Thanks for sending this and I wish you well!
I had “traditional neck lift” or lower facelift Jan ‘18. I had large hematoma and seroma develop day after surgery. I’ve been in constricting, tight/pressure pain. I have had extreme intense discomfort in my head when weather changed fast or rain this summer. A month ago a PMR suggested I had lymphedema, noting fullness on left side face:neck (nothing really noticeable).., so I started MLD/CLD therapy 3-4 weeks ago. 1st MLD massage I felt huge shift in pressure around my head. I had more therapy and it seemed to confirm that this was lymphatically related due to the huge shift in pressure. Unfortunately, we don’t know where lymph damage/block is so I just feel like fluid/pressure not being managed well to yield relief. I became distraught this last week as the pain/tightness all over head/neck has become unbearable. Was brought to U of MN Med Ctr and was told imaging showed nothing and they didn’t suspect lymphedema. (Ps. I also did have a psych consult just so we could rule that I’ve conjured these issues out..., I’m sane/competent) I’ve been sleeping in a chair upright for months, plus been doing MLD for weeks, so assume they wouldn’t see much fluid. Im 5’10 130 lbs. I’m not sure anymore, where to go. No one knows anything about head/Neck Lymphedema. I’m struggling desperately with pressure in my head that can be shifted by MLD but not to relief. I’m concerned that I had some infection (gas-air) or poor healing after the facelift that’s not showing up on imaging, which may have left damaged tissue from fluid sitting in tissues for months, now leaving spaces after MLD massage that are vulnerable to pressure/barometer changes. Is there any info re lymphedema symptoms of head/neck? Can cosmetic surgery result in lymphedema? Any wisdom would be greatly appreciated as I am I’m hitting a wall in coping and am scared
I am so sorry to hear of your problem. Have you gone back to your plastic surgeon to discuss these problems?
You can go online to https://www.ncbi.nlm.nih.gov/pubmed/ and type in head and neck lymphedema in the search field. This will bring up several articles and any of those that say Free PMC Article can be viewed by the public.
Yes there is some research on symptoms related to head and neck lymphedema. These are some that have been found but not every patient has all of these symptoms:
Difficulty moving head and neck
Problems swallowing solids
Something stuck in one’s throat
I am a 16 year ovarian cancer survivor. I had 6 rounds of chemotherapy after a complete hysterectomy along with removal of lymph nodes. Over the years the swelling in my ankles has gotten worse and now my feet, toes and lower legs swell. It hurts to walk for long periods of time. I do wear compresssion stockings whenI fly or am on long car trips which does help to a point. I did attend a few sessions of physical therapy with a lymphedema therapist and was recommended to wrap my legs and do massage. Along with getting the special boots that would pump the lymph system. I was recently told that Ginger Oil can help with the swelling. I’m wondering if you’ve heard of this and what your thoughts are on this? Or if you are aware of any other type of holistic treatment to help with the swelling. I appreciate any thing you can provide. Thank you for your time. Lynn
I am not familiar with Ginger Oil as an integrative care option for lymphedema. There is however a developing body of evidence to support Yoga (not hot Yoga) as a potential integrative approach to help with lymphedema. There are also integrative health centers in many parts of the United States, some of whom have lymphedema therapists on staff in addition to physicians etc. These centers might be able to assist you with developing a more holistic approach to managing your swelling. It is very important that you consult your lymphedema therapist or primary care provider before embarking on holistic methods, just to make sure you do not have any issues that would contradict such approaches. I hope you are able to find something that works for you.
Hi. I am asking the question on behalf of a family member. As a result of being diagnosed with cancer of the uterus approx 14 years ago they underwent a full hysterectomy, they subsequently had chemotherapy and radiotherapy. The lymph nodes were removed from the left leg area. Over the past 4 years lymphodema has become an increasing problem down the left leg. A large lump has grown on the inner thigh and treatment is having very little impact. They are under the care of the Christie Hospital but due to this condition being extremely under funded there are very few options. They currently wear a compression stocking every day which is bearable however trying to obtain a second stocking has become impossible as the nurses never get the measurements right. Very frustrating!! They have visited a clinic in London to investigate the possiblity of lymph node transplant but apparently this is not an option as it has been stated there is a lot of scar tissue?? Whatever that means. I would like to know if there is anywhere in the UK that specialised in lymphodema and what does your research suggest for long term treatment? Many Thanks
As per Dr. Mortimer-
The large lump that has grown on the inner thigh is presumably a large lymphoedema fold although without imaging such as ultrasound examination one cannot be sure. Treating lymphoedema folds is difficult and needs very skilled bandaging. It is important to ensure there is no (over)weight issues as that makes these folds more likely to develop, and more difficult to treat. If all else fails one might have to consider liposuction but everything depends on the circumstances of this patient. Reconstructive lymphatic surgery is unlikely to be an option.
The biggest lymphoedema centre in the UK is at St George’s Hospital in London. The lymphoedema Support Network in the UK (http://www.lymphoedema.org/lsn) should be contacted for advice”
Hello Dr. Ridner: In 1999 I had 15 lymph nodes removed in association with a diagnosis of breast cancer and I am currently lymphedema free. I am interested in flying as a mode of transportation but have heard that the cabin pressure changes could cause Lymphodema. Is there any new information and/or treatment options for people who want to travel by air, but are at risk for lymphedema?
Response from Dr. Ridner:
“Thanks so much for your question and congratulations on 15 years of survival and being lymphedema free. I am unaware of any new information regarding air travel, or any older evidence based information that addresses this concern. Some lymphedema at-risk patients chose to see a certified lymphedema therapist prior to flying and purchase a well-fitted compression sleeve to wear when flying. This is the most common risk reduction practice for air travel, though it is not based on research. If you think you would like to obtain a sleeve, please see a certified lymphedema therapist and be fitted by someone who is experienced in measuring arms for the compression sleeves, as a wearing poor fitting sleeve is believed to put you at risk for lymphedema. For more information on this please check out http://lymphnet.org/resources/position-paper-lymphedema-risk-reduction-practices. I hope you enjoy you upcoming travel!
I have lymphedema in my legs that started when I was about 13 and they say it is primary lympehdema. I am worried about having children. Can I pass this lymphedema on to my children?
I am sorry to hear about your problem, but commend you for asking this thoughtful, very important question. Unfortunately some types of primary lymphedema can be passed on through your genes. I strongly suggest you locate a genetic counselor to assist you in determining if this might be a risk for any children you may have.
Everyone seems to think surgery is what causes lymphedema after breast cancer, but I had very little surgery and a sentinel node biopsy. I also had radiation to my breast. I think the radiation caused my lymphedema in my arm. Can radiation cause lymphedema?
The short answer to your question is yes, potentially life-saving radiation can cause lymphedema. A recent publication, Lymphedema Predictor Factors after Breast Cancer Surgery: A Survival Analysis by Monleon, Murta-Nascimento, Bascuas , Macià, Duarte, & Belmonte addresses radiation in survivors of breast cancer and the role it plays in lymphedema. You can read a summary of this article at http://www.ncbi.nlm.nih.gov/pubmed/?term=lymphedema++and+monleon.
I've had secondary lymphedema for 11 years resulting from removal of lymph nodes under my arm. I exercise, wear a sleeve and a Solaris garment at night. My arm swells sometimes when I take prescribed medications and then I have to work with it for weeks to get it down. It has never been back to normal size even with the PT manual drainage I have had. I have trouble with clothes with this big arm. Would low level laser help to break up scar tissue and could this help? Sincerely, Anne (I've tried a pump also.)
There is some scientific evidence to support that low level laser may be helpful to some people, though results are never guaranteed. You can go online to : http://www.ncbi.nlm.nih.gov/pubmed/ and search for” low level laser and lymphedema”. There you will find a few studies that are free to read that will help you understand low level laser and lymphedema. If you decide to try a laser it is very important to locate a trained lymphedema therapist with experience in using the laser for lymphedema to provide the treatment.