← Return to Recently developed lymphedema: Any recommendations on what to do?

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@frenchtoasted429

I developed lymphedema months after having a double masectomy - and the arm that developed it in was NOT the arm near the breast that had cancer (I had 12 lymph nodes taken out of the left arm, but the right arm was fine, nothing removed by the non-cancerous breast)
So from what I understand that some surgeons and nurse practitioners fail to tell you is that ANY surgery can cause lymphedema and that the patient is always surprised when one arm is suddenly noticably bigger than the other. You should be in physical therapy and see a therapist for the lympho. You can temporarily get a FINGERLESS glove for your hand, and a sleeve to wear on that same arm. Amazon actually sells some fairly good brands. look up on line how to measure, you'll be measuring your wrist, your forarm, around the widest part of your upper arm right below your armpit and then the length of your arm. compression should be 20-30 mmHg. Sigvaris is a good company, the have a secure gauntlet, graduated compression. A little pricey, but comfortable and not too heavy weight when you are wearing it. Make sure you measure for length of your arm from wrist to underpit. I have a great therapist and I've already got the one arm back to it's normal size and matching the other arm in only a 2 months, but I've also had physical therapy and that also helps. Good luck, many hugs, just remember you don't want a glove you want a gauntlet. (and an arm band). The other thing - read up on the lymphatic system in your body - it will help you a lot to understand how it works, why it swells, and what to really do about it.. I thought drinking more water would help - but that's not how it works, so forget water pill suppliments if it's just your hand and/or arm. Oh, and medical supply stores also sell these compression arm pieces, just make sure you measure and then use their size charts.

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Replies to "I developed lymphedema months after having a double masectomy - and the arm that developed it..."

Many thanks for this advice! I will look into getting a gauntlet. Is frustrating that wait times here are so long for a physiotherapist to get me started on therapy (and even a real diagnosis).

I get a prescription from my doctor for my lymphedema compression garments and then buy them through a durable medical equipment company. Medicare and many private insurance companies reimburse for them that way. I usually only have to pay about 20% of the cost. It is sometimes hard to find a durable medical equipment company that will order the compression garments but your lymphedema therapist may know. One of the companies I deal with has a fitter who is trained in lymphedema and does the measuring for me. Also my lymphedema therapist does the measuring. I think it is more accurate if you can get someone else to do the measuring.
If you are struggling with a lot of swelling you might need a night sleeve, which is heavier than the day compression. It is designed to break up fibrosis that accumulates in the arm. I find the Tribute sleeve works wonders. Sigvaris and Solaris make night garments.
Your lymphedema therapist should be able to recommend which garments are most appropriate for you.
Frenchtoasted is absolutely right, Read up on the lymphatic system and about lymphedema. You will find you may need to educate your doctors about it.