Patient Comments: Lymphedema - Diagnosis

Question:

Describe the events and tests that led to a diagnosis of lymphedema. Submit Your Comment

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

Forty years ago, my obstetrician called it elephantiasis. For 15 years, a primary care physician (PCP) called the swelling an endearing quality of mine. A little over a year ago, another PCP told me to just wear compression socks (already was) and that the swelling would rise up and go away. I found a well-read PCP, who looked and said that I was having trouble with the blood pooling in my legs and feet and she referred me directly to a vein specialist, who finally diagnosed lymphedema.

Comment from: [email protected] , 55-64 Female (Patient) Published: July 12

I had breast cancer in 1995, then the lymphedema came about in 1997. I have always taken advantage of most things to help like sleeve, gauntlet, night sleeve, compression pump, and physical therapy. My efforts are to no avail, chronic pain is a daily struggle. I would cut my arm off if I thought it would help but I know ghost pains would win over me. My left arm is now 2 ½ times bigger than right.

Comment from: Candy, 55-64 Female (Patient) Published: June 26

My ankles (both) swelled up immediately after moving to my new apartment during 110 hot summer. For 7 months I went without diagnosis because my physician had no idea what to do, other than give me diuretics which is a no-no if you're aware. Finally I literally had to insist on some kind of testing. She never ordered a blood panel, x-rays, nothing; all these timeless month's I'll never get back. So she told me maybe I have deep vein thrombosis and sent me to a vein doctor. Once I got an appointment I was seen by a physician's assistant. He didn't as much as touch my legs, check for pitting, ask me the medical questions he should have so he'd know my history. All he did was check my heart with the stethoscope saying well, your heart looks good. Now I come from a large family where half of them are in the medical field one way or another so I know perfectly well that's not exactly how you determine ones heart! He gives me an ultrasound, no die, no blood work, etc. That's it. He called me into his office and says well, I think you have what's called lymphedema, and sent me to a therapist. I went to this therapist they do not do any compression massage, drainage, etc. of any kind. And I was given a piece of paper with these silly exercises I already do at home! When I told my primary, she was so nonchalant about the whole thing I had to demand more testing. I think it is lymphedema unfortunately. Last week I felt a strange lump almost shaped like a pear on the back of my calf and when I felt it, it had a spongy feel just like how we are told about in stage 2. So all these months actually nearly a year because of my primary being ignorant to this, I'm now clear up to stage two. I'm absolutely crushed and I can't even imagine living my entire life scared to death wondering when stage 3 is going to attack my life.

Comment from: FLAPEACH, 55-64 Female (Patient) Published: November 11

I had a total knee replacement and developed lymphedema 3 weeks after surgery; leg infections, fever and swelling in the leg. I went to a vein specialist and he has heat-shrunk my veins in the leg that had damaged valves. I have started with the large mass of it in the area above the knee on the inside of my leg. I saw some mention of some massage techniques, and I would like to try that. We do not have an operation theatre here. I need to replace the other knee but am so afraid to do it. I don't want lymphedema in that leg also.

Comment from: jobert, 65-74 Female (Patient) Published: January 14

Basically I self-diagnosed. Swelling first appeared soon after 8 weeks of radiation, preceded by hysterectomy for stage 3 endometrial (uterine) cancer. I had researched online and suspected it, asked the radiologist, and requested physical therapy for lymphedema, I continued one additional round of chemotherapy after that. I have been in and out of physical therapy for two years.

Comment from: Doris, 55-64 Female (Patient) Published: May 01

In 2003 I fell and badly broke my leg and severely sprained the other. After the leg healed, both legs began to swell. It has only gotten worse over the years. There is discoloration, pitting, and it is scaly and painful with knots. I wonder what I have; a disease or just simply lymphedema.

Comment from: Iowagal, 55-64 Female (Patient) Published: October 28

I spent 7 months asking my surgeon (total knee replacement) and family doctor what was wrong. I told them my leg felt so heavy and that the pain at times brought me to tears. The knee surgeon lifted his pant leg and poked his ankle and told me "Even I have swelling at the end of a long day and can poke myself with my finger and it makes a dent. It's just gravity." Okay, but why isn't it happening in both my legs and why does it feel like it's my whole leg? I had no answer. I suffered for 7 months needlessly until I did my own research and referred myself! I finally went to a vein doctor to check my "valves" in the leg to see if they were opening. They were fine, but she said just by looking that I had lymphedema. She explained there was no cure, but I could learn to manage it. She referred me to a "lymphedema clinic" in my hometown of 10,000 people. I met with the OT (occupational therapist) and she showed me two simple massage techniques that I do each morning and night. They take 30 seconds each. I have had so much relief from that simple massage technique!

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Comment from: JJ, 55-64 Female (Patient) Published: March 17

I was overweight. My left leg would swell. My doctor told me to lose some. I lost about 50 pounds but my leg would still swell. He sent me to a lymphedema specialist. That was 3 years later. I have had this since 2000. It gets harder and harder for me to work and my disease is now around my knee on the left side and my lower right leg.

Comment from: Penny4love53, 55-64 Female (Patient) Published: July 31

I have lymphedema from a bad accident in 99. My legs itch real badly. I was told not to scratch my legs. They stay swollen and scaly. I need relief from the itching. Does anybody have any suggestions?

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