New lymphedema questions

It sounds like both cording and LE, most likely. The first thing everyone will tell you is to find a qualified LE therapist. But sometimes that is easier said than done. If your sleeve and glove or gauntlet fits well and doesn't hurt, it's probably good to wear it during waking hours. But if not, or if the swelling gets worse, then leave it off until you get some professional guidance.

Hello, Melgirl,

I'm sorry you're having these difficulties, and I hope you soon have the help you need!

You mention having a sleeve but don't mention a glove or gauntlet. If you don't have a glove or gauntlet, DON'T wear the sleeve, as it can push any swelling into your hand and fingers, where it's a lot harder to deal with. Here's more about that:

https://www.lymphedivas.com/en/hand-protection

And here's how to find a well-trained lymphedema therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

The "cording" the others mentioned is officially known as Axillary Web Syndrome. Here's information and pictures in case you're not familiar with it:

http://www.stepup-speakout.org/Cording_and_Axillar...

Please keep us posted! Gentle hugs,
Binney

You seem to be suffering from early lymphedema. Do not wait until it becomes worse and your physician makes a clinical determination. You want to prevent it from reaching that phase, when it becomes harder to treat. Recent literature indicates that early intervention can prevent the progression to clinical lymphedema. These pilot programs involve the following protocols, ALL of which have been found to be effective, and often used in combination: exercise, compression, manual lymph drainage, pneumatic compression. Keep your own measurements and find a protocol that works to maintain your dimensions. If you see any increase see a qualified lymphedema therapist.

Go to LymphActivist's Site at www.lymphactivist.org and use the search term "prevention". You'll find further information on prevention of lymphedema.

Lymphactivist, I am a poster child for what you mention. Thanks in large part to the wonderful ladies on this forum, and also to a wonderful LE therapist, I managed to reverse the early stage of LE. I still get minor sweling in my armpit and upper arm if I over-excert it, but I no longer wear a sleeve full-time. I also had cording, but it eventually reaolved on its own. Stretching is important. Taking a lie-down with the arm elevated helps. Regular exercise is important, even if it is just walking. Lymph only moves around from the muscles working. I still stretch the arm above my head and clench/unclench my fist several times a day, for example. It is a simple and gentle way to activate the muscles

Can carpal tunnel symptoms mimic lymphedema? I have been having numbness & tingling in both hands on my thumb, index finger, & middle finger.

LE can cause or exacerbate neuropathies and RSIs, including carpal & cubital tunnel syndromes, because of the pressure the swelling can put on nerves and tendons.

I had double mastectomy and axial dissection 2 weeks ago. My upper arm is still bruised and store. I saw a lymphedema physical therapist two days ago at Mayo. He prescribed a sleeve and gauntlet for daytime wear, but the sleeve is very uncomfortable on my upper arm. How early can lymphedema develop after surgery? Can I wait a few weeks to start wearing this stuff, until my upper arm is less painful? ... Thanks!

Hi All,

Anyone used the pump to help with compression? I just recently went back to dr for follow up with LE and she suggested using the pump pending insurance approval, of course. The rep just came today to show me how it works and it basically acts like manual massage. Has anyone have experience with it. Any input would be appreciated.