Lymphedema in legs

Hi, I will try to sum this up quickly so as not to bore you with my story.In 2020 I had the 4 quadrants of my neuropathy stricken legs treated by venous ablation. They managed to cauterize less than what I thought. I still had some swelling and heaviness in my left leg especially. So when I moved to Little Rock, AR and I began Lymphedema therapy. I had specially measured Velcro wraps for my legs. I had been doing great at watching out for anything that may come up on my trunk section or my limbs. Months went by and once again I could see my legs as they truly are. After that I had to have surgery and while I was recovering from Rotator cuff surgery I was in the shower and fell. I got up the best that I could (one armed). No broken bones. I had a Lymphedema Exacerbation and it began all over again. I was in the hospital almost 3 weeks! I was only expected to have day surgery. I happen to have a hiatal hernia that affected my diaphragm. So when I was under anesthesia and woke up in recovery… I panicked and had to be restrained. My breathing was affected by the diaphragm malfunction. I could not exhale so the old oxygen couldn’t be expelled. Causing me to go in to a panic and then restrained. It was a very traumatic experience. I still have not been able to clearly remember that but of time.

Hi @gigi1961, some time has passed since you first posted about your lymphedema diagnosis. How are you doing now? Have you been able to find any relief or any answers on how to proceed forward?

hello everybody; i am very new lymphedama, its all about my cancer and radiotherapy. my left leh and genital place.what can u say me, if u were me... doctors give me a sock and i cant bandage my self. while bandaging, my leg pains much

Hi @emine, welcome to Mayo Clinic Connect.

Dealing with painful lymphedema on top of your cancer and radiotherapy is a lot to handle. I also did a search for Lymphedema on Mayo Clinic Connect, here are the results: https://connect.mayoclinic.org/search/?search=lymphedema.

There are a few lymphedema discussions around various cancer diagnoses that you may find insightful as well.

@emine, if you are comfortable sharing, which type of cancer are you receiving treatment for? Is the lymphedema worse after treatments, or has it been a steady issue since you started receiving radiotherapy treatment?

endometrium ca + liposarkom. lymphedema came after surgery and radioterapy. after 6 months, lymphedema come

Radiotherapy perhaps damaged your lymphatics which caused lymphedema, lymphedema is non pitting edema, if it is pitting it is not lymphedema.

What do you mean by pitting? I have edema in my ankles, feet, and legs feel very hard. And can’t feel toes very well. Any answers please?

thats right, my lenf nodes gone and radioterapy stick all area.%50 operation, %10 radioterapy. so lymphedema comes.

do u have healty lenfnodes or lymp system?

I'm new to this discussion. I was just diagnosed with lymphedema (both legs, the left worse than the right) and venous insufficiency in both legs too. I learned about this after I changed cardiologists and explained my frustration about having previous cardiologists accuse me of not taking Lasix as prescribed because of the swelling. My new cardiologist immediately ordered a vein mapping, which is where my lymphedema and venous insufficiency were discovered. When I found out that lymphedema swelling does not respond to Lasix, I felt vindicated (smile).

There were problems, however. The diagnosing NP explained everything well and told me what to expect when I went to a physical therapist at the clinic she was referring me to. She told me about the massaging and bandaging and said I may not be able to drive during those 2-3 weeks of reducing the swelling. So I spent several days finding ride services I could afford and would pick my up at my home and take me to the clinic at the appointed time. She told me that after that phase was finished and my legs were reduced in size, I would be measured for custom garments that would help maintain the size without the swelling.

My first appointment with the physical therapist was totally different than what I had been told to expect. When she took measurements of my most swollen leg, I thought it was for a baseline to measure my progress with the manual therapy. I was confused when she told me after she finished taking those measurements, she was going to send them to a company of her choice to get a quote for having garments made and then when she got that quote, she would submit it to my insurance company for payment. It was not a good appointment for this and other reasons related to our lack of communication with each other and my resulting frustration.

As a result of what seemed to be the need for some oversight of my therapy by one person, I chose to transfer my care for both lymphedema and venous insufficiency to one person and that person is a medical doctor/surgeon who not only can oversee my physical therapy needs that he thinks are appropriate, taking the pressure off me to try to make sure a therapist implements therapy as directed, and also enables me to explore other options that would not be possible for NPs or PTs to perform, such as some of the new medical procedures for certain stages of lymphedema (done at Mayo clinic and a few other hospitals). And since the doctor I'm now going to see is a vascular surgeon, he also can address my venous insufficiency concurrently with treatment of my lymphedema. My cardiologist (who had ordered the vein mapping) agreed with my plan. And so, I have been able to start a fresh treatment with a new doctor (an independent who is well known in my city) and stop seeing the PT who seemed to be a poor fit for me.

I'm sharing this because I have read several stories about people having trouble finding adequate treatment for their lymphedema. My short experience seems to be reflect that as a problem. I chose quick action to move away from the PT who made me feel uncomfortable. I hope my decision to engage a doctor instead turns out to be the right choice. I will keep you posted.