Patient Comments: Lymphedema - Diagnosis

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

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.

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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.

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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.

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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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Lymphedema - Treatment Question: What kinds of treatment did you receive for lymphedema?
Lymphedema - Symptoms Question: Describe the symptoms associated with your lymphedema.
Lymphedema - Experience Question: Please share your experience with lymphedema.

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