Recently developed lymphedema: Any recommendations on what to do?

Posted by djewison @djewison, Aug 26 9:38am

I finished treatment in June had proton radiation last November and surgery end of August where they removed lymph nodes under left armpits I recently developed lymphedema in left hand. Any recommendations on what to do?

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First step is to find a lymphedema therapist. Sometimes a Physical therapist. Sometimes An occupational therapist. My lymphedema became evident between chemo and radiation. Therapist will teach you massage techniques to use and determine what type of compression garments might help. That is how you start.

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You might need a referral from your oncologist or pcp first. I did. Finding one- I live in a rural area was difficult but doable. I had to drive an hour. Mine was excellent. I was able to bring in my husband and she taught him how to do the “massage” . I had to get compression garments from another place- insurance will cover this.
Get on this quickly- I caught mine early-

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I have a compression sleeve that I can use whenever I am feeling it. I have learned to start the massage and put on the sleeve sooner than later with even a hint of fluid. I have been blessed with limited incidents.
Have you reached out to your doctor yet?

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Don’t wait. My lymphedema started after I finished radiation therapy and worsened very quickly from a little puffiness in fingers and across top of hand to involving entire arm and side of neck. I contacted my surgeon who gave me referral after quick trip to his office. In the mean time do not wrap it or ice it or massage it. Swelling from lymphedema is different from swelling from an injury . I would do this asap

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The advice here is excellent. It makes me feel less alone hearing from women with lymphedema.
I might add if at all possible, find a PT who is CLT/LANA certified. LANA is the Lymphology Association of America. CLT is a Certified Lymphedema therapist. I first was sent to a PT without lymphedema training. I spent months getting a massage that wasn't helpful. I wasn't fitted properly for compression garments. You can see from the picture how bad the swelling got in my hand. (This picture is from 5 years ago.) Once I got to a LANA certified therapist, I first had to learn "self wrapping" where I had to wrap my hand in gauze bandaging. It was frustrating and demoralizing but it wasn't permanent. As the swelling came under control, I was fitted for a compression glove. I now wear a gauntlet. My fingers are usually normal and my hand looks normal, though I have to wear compression 24/7.
I have lymphedema along my chest wall, on my arm and under my arm as well as my hand. This link might be helpful. https://clt-lana.org/ Also explore LE&RN. That is the Lymphedema Education & Research Network. https://lymphaticnetwork.org/

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@wellgirl

The advice here is excellent. It makes me feel less alone hearing from women with lymphedema.
I might add if at all possible, find a PT who is CLT/LANA certified. LANA is the Lymphology Association of America. CLT is a Certified Lymphedema therapist. I first was sent to a PT without lymphedema training. I spent months getting a massage that wasn't helpful. I wasn't fitted properly for compression garments. You can see from the picture how bad the swelling got in my hand. (This picture is from 5 years ago.) Once I got to a LANA certified therapist, I first had to learn "self wrapping" where I had to wrap my hand in gauze bandaging. It was frustrating and demoralizing but it wasn't permanent. As the swelling came under control, I was fitted for a compression glove. I now wear a gauntlet. My fingers are usually normal and my hand looks normal, though I have to wear compression 24/7.
I have lymphedema along my chest wall, on my arm and under my arm as well as my hand. This link might be helpful. https://clt-lana.org/ Also explore LE&RN. That is the Lymphedema Education & Research Network. https://lymphaticnetwork.org/

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Absolutely CLT/LANA certified! I was also taught the layered wrapping in the beginning along with massage. Lymphatic massage very different! And don’t attempt until shown! I am so grateful to my therapist for showing me how to manage my lymphedema

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See a vascular doctor. After I had lymph node removed from my right side armpit area I had swelling in right arm and right hand along with what felt like nerve damage. I wore a compression sleeve for a few months and a compression on my right hand. Eventually it got better because the other lymph nodes in the area picked up the "effort" for the lymph node removed. See a vascular doctor. I hope you get better.

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