Lymphedema - new support group: Let's connect

Actually, the new law was effective Jan 2024. But yes, I have compression sleeves, gloves, a night sleeve and a pump. Your Dr should write you a Rx if you’ve been diagnosed with Lymphedema. I am also in PT for Lymphedema and have been for a year.

Are you on Medicare? Medicare covers 3 compression garments per year for most areas. Check with your ins co. If not medicare

Yes, several. 3 garments per body part as well as night garments , pump …. Most items that are affected. You can google the new law. I do believe you must have a physicians diagnosis. It’s much better to have custom made just to fit you if possible. Best Wishes!

I had some axillary lymph nodes removed in 2013. I am just starting to see lymphedema symptoms, but my therapist says the swelling is starting under my shoulder blade. Compression is not practical. She gave me some exercises, has anyone had success with exercises?

I am sorry you are having trouble with this. I had to read your post a couple times to really grasp it. The lymph node under your collar bone is the ones my doctor is always feeling.
There is a thread that I think you might be interested in;
https://connect.mayoclinic.org/discussion/lymphedema/
I am very curious about you might go about treating this. Have you talked to your doctor about this, just to make sure there isn’t another reason for this?

I saw my oncologist who recommended a physical therapist. There is no one LANA certified within 120 miles of me. She helped a little, and if there is nothing new I will do the exercises she recommended.

Since this is not a limb, compression is not an option.

Just wondered if there is anything new...

I wear compression socks for my lymphedema in my legs and recently started wearing a man's compression shirt to help with back support and it puts a squeeze on my back and chest area including under the arms. It might be something to discuss with your physical therapist and oncologist. Do you think a women's compression shirt might help along with the exercises?

I have never seen a women's compression shirt that covers the shoulder blades. There are some mastectomy vests that partially cover the shoulder blade but the unneeded compression on the chest is uncomfortable.

I don't have a lot of swelling (yet), trying to keep it that way. I was just wondering if there is something new in treatment of lymphedema.

@chrisbomstad I had lymphedema briefly during chemo for breast cancer in my legs and feet. I had switched to a plant-based diet during chemo and discovered that several of the vegetables I was eating in large quantities were loaded with sodium. Celery has the highest sodium along with spinach & beets. I also quit walking as much as I had been because I thought it was aggravating it. Wrong! I started walking at least 3 miles a day and watching my salt intake, drinking lots of water and it went away. I hope this helps!

Anyone experienced Lymphedema rask/bumps on neck?