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 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.