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Joachim Zuther, Lymphedema Specialist. Read more
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Lower Extremity Lymphedema Symptom Online Survey

 

Sheila H. Ridner, PhD, RN, FAAN, Associate Professor at the Vanderbilt University School of Nursing asked me to share with you a call to individuals affected by lower extremity lymphedema to participate in a fully on-line study regarding symptoms experienced by these patients. Anyone with lower limb swelling can participate; names are not being collected with the data.

Lower Limb Lymphedema Symptom Survey

Vanderbilt University School of Nursing inNashville,Tennesseeis conducting a study to learn about symptoms related to lower limb lymphedema.

If you suffer from lymphedema or swelling in your legs and are over 18 years of age, you may be eligible to take part in this study. You will be completing a one-time survey for development of an assessment tool for lower limb lymphedema symptoms. This survey will take about 25 minutes to complete.

If you are interested, please contact Nancy Kidd at Nancy.Kidd@vanderbilt.edu or the Principal Investigator, Dr. Sheila H. Ridner, PhD, RN, FAAN, Associate Professor at Vanderbilt University School of Nursing, 525 Godchaux Hall, Nashville, TN 37240, 615-322-0831 at Sheila.Ridner@vanderbilt.edu

Anyone, anywhere who has access to the internet and is eligible can be in this study.

Do you need more information on other topics on lymphedema? Use the “Select Category” window on the right of this page and select the topic you are interested in. Once selected, a new page will load with a number of articles related to the topic you chose. Click on any headline of the articles and the entire article will load up for you to read.

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35 comments to Lower Extremity Lymphedema Symptom Online Survey

  • Glenda Williams

    I developed lymphedema in the left leg after a hip fracture in 1994 and two surgeries six months apart (age 52 at the time of the fracture and surgeries). The lymphedma in the left leg developed gradually and became worse over several years. In 2002 I began decompression therapy and wrapping, along with custom hosiery of various types, lenghts and manufacturers. Foot surgery on the left foot in 2003 made the lymphedema worse and now toes have worse lynphedema as well as left leg into the thigh. The left knee also is affected. In May, I will be 70 years old.

  • Cindy Swearingen

    I had a lot of problems with phlebitis when I began to have kids (34 years ago). The phlebitis crushed my veins and caused my legs to swell but it always went away after the pregnancy was over. That is until my last pregnancy. After my son was born neither the phlebitis or the lymphedema wanted to go away. In 1996 I did have decompression therapy at a clinic in Princeton, NJ. Now I maintain a routine of wrapping bandages at night and stockings during the day and try to get some exercise as well and it definitely helps. I can go a couple of nights too without wrapping but I dare not go longer than that. I can go only an hour or two without the stockings or they start swelling again. All in all though it really helped and I don’t know what I would have done without that therapy.

  • Joan Castro

    I am 85 years old and have had lymphedema in my legs all my life – mildly as a child, much more severely as I have aged. In my middle years I had phlebitis twice.
    I have had compression therapy and wear compression stockings in the daytime and short-stretch bandages with velcro straps on my legs at night. The stockings and wraps are extremely costly and Medicare does not contribute to this expense. My husband died a year ago and I have to struggle with these garments by myself night and morning. My lymphedema is genetic, through my maternal grandmother and my mother.

    Joan Castro

  • Rhonda Dudley

    I have had lymphedema since cancer surgery Nov 2006…on my 50th birthday. My left leg is mostly effected. I use wraps 5-8 hours daily and alternate with compression stockings. I also spend at least 1 hour per day either swimming or doing water aerobics. This helps. I live in the Coastal Bend of Texas and for the past several years, we have had major high pressure, weatherwise. Lymphedema is not good when we are having very high pressure!

  • I am 39 and I have Primary Lymphedema in my right leg. It started at 36 (upon hurting my back). When I was 3 I developed Lymphedema in my left hand and lower arm (probably by an insectbite), no one knew what it was so I wasn’t diagnosed until it happened in the leg all these years later. I wear compression on the leg but the extra fluid in the hand has long ago converted into fatty tissue and so the Lymphedema there is not “active”. There doesn’t seem to be any history of Lymphedema in my family.

  • Ray

    Hello, My name is Ray I am 32 and I have Lymphedema in both legs but my right leg is the worst of them…I have to wrap it all the time cuz it swellow up so bad I also have the compression stocking too that I wear….I have to cut my pants legs and have them made bigger so I can wear pants…Most of the time I wear shorts all year around cuz of that…. I hope someday they are a cure for this…

  • savannah

    Hello, my name is Savannah. I am a 28 year old woman with lymphedema. I have it in both of my legs. My left leg is bigger then the right leg, but my right foots bigger then my left. I do manual drainage at home with the help of my boyfriend and my pump. I also wrap to keep the fluid out as much as possible. I have had this for 13 years now. It first started in my right leg, but a few years later after getting pregnant it went to both legs, and I have had it in both ever since. It is difficult to shop for pants and shoes. I have not had the normal life of a regular female. Cant dress up and wear cute shoes, instead I live in sweat pants and stretchie pants with mens shoes… yay. I hope that you all stay strong and keep your heads up. We may have lymphedema, but it DOESNT have us. God bless you all.

  • Kimberly

    I am 44 and I have lymphedema in my right leg. I got it back in 1999 after surgery. I have had 2 surgerys since than. I keep going because I will not let it get me down.

  • Joann

    I have had lymphedema in my left leg since I had surgery for Melemona in 1989. I have wore compression stockings for the last 22 years and I now have an overnight garment that I wear. I also work which requires me to stand on my feet for 8 hours a day. It is hard to find pants that fit right and now my supplier will not bill my insurance for my stockings because they say they don’t pay enough.

  • Kathleen Anthony

    I had a dvt in my left leg in 2001 and fought a little swelling off and on. In 2005 I had my first arthoscopic knee surgery (left knee) and still had a little swelling. In 2010 I had my second knee surgery, on my left knee, this time the swelling was a little worse but went away after 2 months. About 3 moths later I woke up to any extremely swollen left leg from right above my knee to my toes. My foot wouldn’t fit into a pair of flip flops or any shoe, I immediately went to my Doctor who did some testing, and diagnosised me with lymphedema. I began treatment, therapy and wrapping in June. Soon I my sweeling was down and I was wearing compression garments which helped. I had been working as a 9-1-1 opearator and had to quit the job because the extreme amount of setting was making the lymphedema worse. I Can’t find pants that fit and at time shoes either and dresses are out of the question because the lower part of my limb shows and I get all the questions as to what is wrong. Insurance is a joke they pay for 2 garments a year. After 6 months they are pretty much shot…

  • karen

    I’m 55 and have known of my lymphadema for about 10 years. I’ve doctored with a “fat” leg on and off for 20plus years. I had massage therapy and wrappings and custom made socks. someone said theirs lasted 6 months, I’m hard pressed to get 4 months. Shoes are becoming very hard to find, as is a job. I taught school for 20 years and worked retail for 9 years. Standing for long periods isn’t good, sitting seems worse. What’s a person to do? Can’t even go to the store without being starred at. Any new ideas?

  • I got lyphedema 4 years ago from a dog scratch and infection, then cellulitis. Its in my lower left leg. Have gone for therapy off and on. Wear wraps and am getting waist high stocking cause nothing and I mean nothing keeps those darn wraps from rolling!!! VERY frustrating.

  • Dawn Y Pitzer

    Hello: I’m a 55y/o with left lower leg lyphedem. When I was a little I fell on cement steps and my left leg started swelling, it’s worst then the right one. Then in 2009 I had a left knee replacement the next day my leg was all swollen and very red . The Dr was afraid I had a blood clot. I have had therapy and the wrappings and in custom stockings but if I leave them off for any amount of time the swelling gets bad and back to stockings. I agree that the stockings don’t last more than 4 months and I have to pay 20% for each pair. It tends to get costly when you get 1 paycheck a month. It’s VERY FRUSTRATING.

  • and walk. I was a kitchen manager at my school for 16 years and also help coach sports. I can no longer do most of those things. I am currently trying to be retrained in a new profession. I hope I am able to complete this because I can’t stand not being able to do next to nothing. I am still struggling with pain & swelling in my lymphedema leg after 5 years. I wish it would go away so I could get my old life back.

  • Vanessa

    Hi, I have been dealing with this since 1999, spent years going from doctor to doctor. Finally diagnosed, now what? I cannot work due to the fact that the constant pain keeps me awake, the swelling prevents me from wearing normal clothing, and I haven’t worn real shoes since 2007. My question is: Does anyone else have these blister type things that just keep getting bigger and bigger until they burst on their legs? My skin splits from the swelling and bleeds, but these “blister” things are the worst, all over my legs and they hurt as well. Another thing, any trouble laying down to sleep? Have been sleeping sitting up for almost 3 years. Any help would be appreciated!

    • Joachim Zuther

      Dear Vanessa: The blister-like formations you describe are called “lymphatic cysts”. I would suggest you seek the services of a trained and certified lymphedema therapist as soon as possible to get the situation under control. In order to locate a therapist, you may click on the link “Find a Therapist” on top of this page.

  • Helen

    I originally started lymphedemia in my left leg after a fall and fracture in my left hip. The doctor called it traumatic lymphedema.I’ve had lymphedema in my left leg more than my right leg but they both get bad when I get a flair up. I get blisters all the time like Vanessa. All the doctors do is put the medicated wraps on my legs. I had gone to a lymphadema physical therapist once and it helped some but it’s only temporary. Because of all the blisters that form my skin has hardened and is purple and you can see all the scar tissue from the healed blisters. One dermatologist called the condition that I have lipodermatosclerosis which is now causing the lymphedema from my calf up into my thighs. I’m in pain all the time but when I get a bad flair up it’s unbearable. My skin is so tender that I cannot tolerate the compression stockings or the pump. It causes so much pain that it actually increases my edema. I’m at a loss at what to do anymore. Is there any hope?

    • Joachim Zuther

      Dear Helen: In order to get long-lasting results and prevent “blistering” in your leg from occuring, it is necessary to decongest the leg with complete decongestive therapy to a normal or near normal size and to maintain the results by wearing appropriate compression garments, performing exercises, skin care and self-manual lymphatic drainage techniques. You mentioned that you saw a lymphedema therapist, but the results were only temporary. This is unfortunate; the therapist should have instructed you in appropriate self-care techniques and measured you for a compression garment. I would suggest seeking the services of a trained and certified lymphedema therapist to get this situation under control. In order to locate a therapist in your area, please click on the “Find a Therapist” link on the top of this page.

  • Jan

    For those of you who mention the expense of compression stockings, I discovered that holes can be sewn with a regular needle & thread. The co. that manufactures the stockings I buy “improved” them, & now they are thin on the bottom where they should be reinforced. I had worn a stocking twice, put it on for the 3rd wearing, heard a popping noise, and there was a hole. I was SICK. I knew I could not afford to replace stockings after 2 wearings. It would have cost $600/month, unaffordable for the average person. From that point on, I have been making repairs with a needle & thread, and I have been wearing a pair for over 8-1/2 months. I’m shooting for another month or two. My insurance doesn’t cover a dime of the cost, so I am very happy to know holes & runs can be repaired. Because of excessive greed, the company did themselves harm; now the stockings are lasting more than twice as long. By making an inferior product in the hope of increasing profits, they actually cut their profit more than half in my case, and I could not be happier. I have the cost down to under $9/month.

  • ANN

    Hi There: I’ve lived with Lymphedema for more than 10 years undiagnosed. I since learned i acquired primary lymphedema through a great-grandmother and surgery I had in the groin through the lymphnodes in 2001. My left leg was much worse than my right however the right leg symptoms started in 2009. I found an awesome Lymphatic drainage Compression Therapist here in Ontario,Canada. Underwent compression wrapping and have been wearing thigh high custom stockings for the last 2 years. I have a suggestion this may work as it happened to me. I was asked to be a leg model for a medical company who was training there associates to measure lymphedema legs for stockings. I thought cool “a new experience” and I was rewarded with a new pair of custom stockings. It’s just a thought. I also network with as many people as I meet and it’s so easy to visually see if someone is wearing a compression garment. I just strike up a conversation and go from there. I’ve also added a lot of different stitches and such to my stocking to make it more comfortable i.e. no more sliding down the leg. Just slip them on and forget about them. I am now 55 and my life restarted at 53.

  • jennifer785

    Hi, this blog is really amazing and provide me answers to all my questions. This is really informative and I will for sure refer my friends the same.

  • kathy ryan

    I had a DVT in the late 1980s the clots actually went to my lungs (pulmonary embolisms). In early 1990s my primary lymphedema presented itself. I’ve been managing it and it’s been relatively mild…due to diet and exercise. However I’ve had a red mark on my right leg, almost the same area that the DVT was. My physician says it’s superficial thrombophlebitis and all I should do is wrap it and give it a few more weeks. I’ve already had it 3 to 4 weeks. Should I see a specialist? Should they be monitoring the swelling?

    thanks…k

    • Joachim Zuther

      Dear Kathy: If it is a thrombophlebitis it may take a while for the discoloration to disappear

  • Virginia Day

    I have been diagnosed with lymphedema maybe from a surgery or from a fall they could not say. Since the ankle surgery on my left ankle that ankle always would be swollen by the early evening time and no pain. Since the fall I have lumps forming in arms on legs and the pain is so bad. I had been using the compression socks since the surgery and the swelling became worse and more pain. I have spots forming on arms legs look like blood under the skin then they open and take forever to close and I am left with white or dark brown spots on my skin.I can’t sleep as the pain is severe. My toes hurts so bad they burn and are numb too. I know that must sound weird. In fact every part of me hurts. Is there something I can do about the pain and being able to sleep at night? I can not wear normal shoes or pants and gaining weight I can not stand very long as I have herniated ruptured discs in my back and my neck. So exercising is hard for me. I can walk leaning over from one room to another and that is it. All of this started after the fall. Please suggestions would be greatly appreciated.

    • Joachim Zuther

      Dear Virginia: The swelling in your ankle area could certainly be a primary lymphedema as a result of your ankle surgery. I would recommend consulting with a trained lymphedema therapist in your area. Please click on the link labeled “Find a Therapist” on top of this page to assist you locating a therapist. In reference to the various lumps and pain you are describing, I would recommend consulting with your PCP, who may refer you to a rheumatologist.

  • Virginia Day

    I also have been put on the dual leg pump 2 times a day.

  • Mebby44

    I’ve had lower leg lymphedema for almost six years due to surgery for cancer. I wear custom hose (I’m one of the lucky ones- my insurance covers 2 pairs per year). I am having problems with my knees and injections and possibly knee replacement appear probable. I am 70 years old.

    What are the problems I might anticipate? In evaluating surgeons, what should I look for. What questions should I ask?
    I know we can’t expect a “perfect” result from any medical procedure but I want to give myself the best odds possible.

    • Joachim Zuther

      The anticipated benefits of surgical procedures often outweigh any possible negative effects the procedure may have on your extremity. While an increase of swelling is possible following the procedure you should not expect long-lasting effects as long as you continue to take care of your lymphedema the way you already do.

  • Cliff Lusk

    Dear Dr. Zuther,

    I am a registered nurse case manager in Arkansas. I have a mid-30’s patient who was run over by a car in October 2014. Nothing was fractured and he developed a mild Morel-Levalle lesion. My question is this: Is lymphedema exacerbated by activity? The left gluteus/hip swell dramatically after walking short distances or sitting for prolonged periods. The patient has been seen by a trauma surgeon, orthopedist and pain management specialist with no success in treatment. This is an otherwise “healthy” person, and I’m at a loss how to procede in assisting. Any help is greatly appreciated.

    • Joachim Zuther

      Dear Cliff: Lymphedema is usually not exacerbated by activity as long as the patient wear appropriate compression – in this case a pantyhose. Dramatic and sort-term swelling is generally not indicative of lymphedema either.

  • Sandy

    Hi, my name is Sandy and I was recently diagnosed with Lymphedema in both legs with the left being the worst. I have suffered for years with swollen feet, ankles and calves until I was finally diagnosed. I have found a wonderful Lymphedema therapist. The left leg was wrapped 4 weeks before we started wrapping the right leg. My right leg is giving me fits with intense itching while being wrapped. Any suggestions?

  • Diane

    I am thrilled to have found this blog and hope that someone might have an answer for me since I have exhausted every avenue. In January 2013 (age 46) I had a partial hysterectomy (my decision) for a fibroid. A week later the path report revealed endometrial cancer. 3 weeks later an oncology surgeon removed my ovaries, falllopian tubes, and some lymph nodes assuring me and my husband, who is also a physician, that I would not develop lymphedema. Chemotherapy and radiation then followed. When following up with my new oncology surgeon (the original retired shortly after my surgery) 10 months later, and commenting on my “jiggly” right thigh, she quickly explained it is early lymphedema. I began treatment with a physical therapist for MLD, she also performed myofascial release, and I began wearing compression hose (15-20 mmHg). My condition worsened; now both entire legs to toes were swelling. I increased MLD & myofascial treatments and compression hose (20-30 mmHg), and used the pump in office. My condition continued to worsen; both entire legs to toes were more swollen. I incresed the compression hose to 30-40mmHg. My life was miserable! I have always been thin, 5’6″, 125 lbs, and very active. I now could not fit in any of my clothes. On my own I decided to go back to the drawing board. I started wearing a 30-40mmHg compression thigh high on my right leg and suddenly I was back to where I started – only my right thigh was affected! It seems the compression waist band was blocking things. Last summer I was doing so well with exercise & the thigh high that I only went for MLD once per month to be on the safe side. As long as I took care of myself during the day I was able to wear skirts & go without compression in the evening. Then, last September my ENT prescribed prednisone for inner ear fluid. After 2 weeks, my entire right leg was so swollen I could not fit my foot in a shoe. Since I also had strange pains in my leg, I saw a vascular surgeon to ensure I did not have a DVT. Everything was negative. The vascular surgeon insisted it’s lymphedema. I went for a 2nd opinion at another lymphedema clinic where I was told the increased edema is due to the prednisone and should dissipate someday. My original therapist wrapped my leg every day for 2 weeks which helped greatly, turning the condition around; however, my right ankle still balloons all the time! I put on my 30-40mmHg thigh high before getting out of bed in the morning and within 15 minutes my ankle is swollen. My therapist calls me an enigma since I don’t seem to have ordinary lymphedema. Yet, my weight is low, as is my BP, heart is fine (I’ve had an echocardiogram to make sure), the vascular surgeon ensured me the venous valves are operating properly. Some days I wake up 7 lbs heavier! My PCP prescribed a very low dose diuretic which seems to help. Contrary to everyone’s instruction, I do a hearty 3 miles power walk daily WITHOUT compression since wearing it only seems to make matters worse. Today I started my day WITHOUT my compression thigh high. After 5 hours I don’t have the increased edema in my ankle that I do wearing compression. It looks as it did when I got out of bed! My right thigh is still larger than my left. I don’t know what to do any more. What’s worse is that my GYN, oncologist, and radiation oncologist admit they know nothing about lymphedema and cannot help. My PCP referred me to a leading lymphedema physician at John’s Hopkins, but without listening to me or even reviewing my records, he only was pushing lymphovenous bypass surgery. I have no intention of doing that. So few physicians know anything about lymphedema. I know this is not normal lymphedema, but what is it? Am I missing a piece of the puzzle somewhere? What should I do to keep the lymphedema in my right thigh from moving lower since it seems the thigh high might be blocking the flow? I have tried just wearing a knee high in the past, but the edema in my thigh increased to include my knee. Any suggestions would be appreciated.

  • honey daniels

    ive lymphedema heriditery it sucks either way..had a tramatic njury mva and the thigh is swelling and now I believe its looking like cottage cheese with pain in th ehip area is it possible if I have hip bursitis its from my lymphedema being exasberated because of the hit I took?MY SURGEON WANTS TO DO A NECK SURGERY ON ME AND IM SCARED IF I DO IT MY NECK OR HEAD WILL SWELL ANY ADVICE ANYBODY WENT THROUGH THIS?