Patient Comments: Lymphedema - Treatment

Question:

What kinds of treatment did you receive for lymphedema? Submit Your Comment

Comment from: liab, 55-64 Female (Patient) Published: October 02

In two days, I am going to have a venous lower extremity duplex bilateral scan on legs and feet and an ankle/brachial index. The doctor says he is looking at the healthiness of my veins. The doctor says I will more than likely need a massage pump to force the blood to my heart. So far, I have used compression for my lymphedema but they cut into my legs so badly that the legs, feet and ankles go numb.

Comment from: Rhea, 65-74 (Patient) Published: July 06

At the first sign of lymphedema my oncologist sent me to the area where they teach patients how to pressure wrap your arm (or leg). I rewrapped my arm twice a day and could have the wrap off for only 30 minutes at a time. It took me about that long to unwrap and rewrap. After 6 weeks of this I got my permanent sleeve. After about 6 months I found I could leave it off unless I wanted to do something more strenuous than normal and I wear it for those times. But we need to avoid the big stuff.

Comment from: Kim, 65-74 Male (Caregiver) Published: May 22

My 73 year old father has lymphedema in his right leg and is really suffering. He's had a Doppler and 6 week bandage treatment plan. He's now unable to walk and both knees can no longer hold his weight. He's not overly large but seems like his legs are deteriorating.

Comment from: Lindersue, 65-74 Female (Patient) Published: June 15

I have had lymphedema for over twenty years. I suffered with severe swelling, at times the swelling in my legs was so bad I thought my legs would explode. Eventually my hands and arms became affected and I ended up with arthritis in both hands. I could find no relief. My family finally talked me into trying again and I am so glad they did. The rheumatologist I went to diagnosed me with a connective tissue disease as well as being diagnosed with lymphedema. I have been on a lymph pump for twenty years now and am taking Plaquenil for my arthritis. The pump keeps my lymphedema under control. I pump twice a day for an hour each time. It keeps my legs so that the pain is very minor and I do whatever I want. Of course, if I overdo I pay, but it is right back on the pump and away I go again. Of course I have the ugliest legs in the world, but I keep them under cover. I dance most Saturday nights and love to motorcycle with my husband. Just keep a positive mind and an active life. Hope these comments are helpful.

Comment from: darrman, 55-64 Male (Patient) Published: May 02

I have swollen lymph nodes in my groin since a surgeon last year put a Gore-Tex vein in my leg. The lymphedema just got steadily worse. I wear compression stockings and they don't help. I am beginning treatment massage on Wednesday.

Comment from: MargaretO, 55-64 Female (Patient) Published: April 25

My left arm lymphedema started in 2002 after breast cancer surgery, but has turned very severe in the last 5 years due to second occurrence of breast cancer. I am desperate to try anything. My hand is the worst, very swollen and numb, and my arm is huge. I would like to try pump therapy at a clinic to see if it will do any good. My oncologist has no suggestions for me, I am willing to travel for treatment of any kind that might help me. I'm going to start chemotherapy soon, and honestly breast cancer is less uncomfortable than lymphedema is. I need help!

Comment from: Lynette Armstrong ly, 65-74 Female (Patient) Published: August 09

I have just been diagnosed with lymphedema. I had an operation in 2015 which caused blood clots in my right leg. It affected my groin and most of my leg. My leg is red and looks sunburnt and is peeling. I am now wearing tight stockings. I don't know how this was not picked up sooner by hospital visits, if it wasn't for the physiotherapist it might have got worse.

Comment from: Carol, 65-74 Female (Patient) Published: October 01

I was diagnosed with lymphedema in both legs. I went to a therapist for a while and then was given a home pump and garments to wear. I am in worse shape now than I was in before. The swelling is down but I can hardly walk and lose my balance a lot.

Comment from: Nnenda C, 25-34 Female (Patient) Published: December 09

I was diagnosed with primary lymphedema in 1990 after I had a knife injury on my left foot; it affected the both legs. I had a corrective surgery on my lymph nodes, the surgery was carried out on both the sides of my legs and on my foot, three surgeries on the right leg and three surgeries on my left leg. After the operation I was advised by the doctor to always raise my legs with a pillow above my body level and that it will help the fluid flow from my foot to my body and it has been working for me. My left leg has stopped swelling I am managing the right leg by raising it up above my body level. I have been managing it for 23 years now.

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Comment from: bigron048, 45-54 Male (Patient) Published: November 24

Well, here's my situation. For about 18 years now I've suffered with lymphedema and have been to every doctor imaginable and I've tried every device out known to man. And nothing has worked. I've even considered surgery to try and correct it but the only problem is no one will attempt it so I don't know what to do. I'm sort of at the end of my rope. Of course as to how I developed it is unknown.

Comment from: kattthy, 65-74 Female (Patient) Published: June 07

I have had lymphedema for 10 years now. I have had very little help with it, my insurance wouldn't cover the clinic and the wound clinic said it was a lymphedema problem and I needed to go to the clinic; a real catch 22. My legs are always an open wound. I just turned 65 so I am hoping that opens a few doors for me. My regular doctor helps where he can but admittedly he isn't that informed. It can feel awful lonely at times but I keep plunging forward. Thanks for listening.

Comment from: Amy, 45-54 Female (Patient) Published: May 01

I was diagnosed with lymphedema about 2 years ago. I am a diabetic and developed an infection in my foot. However, I believe I had it a long time ago (over 30 years). My back is like a shell with a large itchy patch (feels like fire). The same thing happened to my right leg. But I found out it was eczema and varicose veins.

Comment from: Killer Bee, 65-74 (Patient) Published: January 03

I am awaiting a diagnosis as to the cause of my lymphedema but most likely it is a result of treatment for endometrial cancer. I'm just hoping it's not actually a cancer recurrence. I have severe swelling in both legs but one is worse than the other. I also have some swelling in my abdomen. Walking is difficult. I cannot bend sufficiently to put on stockings but I try to elevate my feet from time to time. There is some pain but it is manageable at present. I am seeing a new specialist tomorrow morning who will probably schedule another biopsy. I am very anxious.

Comment from: bob, 75 or over Male (Patient) Published: February 10

I've had lymphedema for about two years, I think it started after groin surgery. I am looking for a specialist that can help me. It seems like they don't know how or I'm just not getting the right doctor. I have it in both legs. I have a lot of pain, and I'm getting so upset.

Comment from: dalcrazy, 65-74 Female (Patient) Published: December 16

My lymphedema is caused by nodes being removed due to breast cancer. I have had it for 13 years and had two bouts of cellulitis. I have had lymphatic drainage every two weeks by a certified lymph drainage person. I also have various sleeves and wraps.

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