Lymphadema

They seem to cover treatments/garments for breast cancer and others that they don't cover for head and neck. There still seems like there is stigma attached to head and neck disease (has anyone else found this?) even though the epidemic numbers are climbing, will continue to climb, at least until the HPV vaccinated population grows up. We all need to speak out but not sure where. Physio made me a head mask from thick stockinette, with slits for eyes, nose and mouth. So 2-3x per day for 30 minutes, I look like Mr. Potato head, but it works, esp if I do massage first. Some days I can't be be bothered and the lymphedema is almost completely gone.

My massage therapist made me up a custom one. Biggest help though was massaging techniques she showed me and sleeping on a double pillow.

My massage therapist was certified in head and neck. 

I am visiting from the uterine cancer discussion board. There is some national coverage mandate that insurance companies need to cover compression garments for breast cancer. It doesn’t apply to other cancers. That’s the power of the lobbyists from the Susan Komen Foundation. If compression garments are covered for one type of cancer it should be covered for all - lymphedema is lymphedema! I heard this week on National Public Radio that there are 5 centers in the US that successfully do lymph node transplants for cancer survivors suffering from lymphedema. 

Lori

My husband is also dealing with lymphedema. He had his first appointment with PT on Monday, but can’t get in for the next 8 appointments until 3 weeks. He got in Monday by taking a same day cancellation. I found someone who does lymphedema massages that I am going to contact on Monday. The hospital recommended the place we went to with the booked up appointment & long wait because it’s a part of the hospital. I’m checking into whether our insurance will cover the new place I found. It’s actually quite reasonable so even if it’s not covered I plan to get my husband in to get started on the massages. He is currently doing self massages and wearing a chin/head strap I bought online. He is also taking walks with me and not spending the day resting on the sofa. His swelling is gradually going down.

christine2080 said:

Photo or description, please!

My husband is also dealing with lymphedema. He had his first appointment with PT on Monday, but can’t get in for the next 8 appointments until 3 weeks. He got in Monday by taking a same day cancellation. I found someone who does lymphedema massages that I am going to contact on Monday. The hospital recommended the place we went to with the booked up appointment & long wait because it’s a part of the hospital. I’m checking into whether our insurance will cover the new place I found. It’s actually quite reasonable so even if it’s not covered I plan to get my husband in to get started on the massages. He is currently doing self massages and wearing a chin/head strap I bought online. He is also taking walks with me and not spending the day resting on the sofa. His swelling is gradually going down.

Hi Christine, I am finding that at 15 wks out the swelling has decreased a lot. Partly, it was due to healing and I think activity makes a big difference. My pt also taught me a quick massage technique and that made a difference, as well. One last thing, I noticed that when I was tense with bunched up muscles the swelling and discomfort was worse (as it also could get way prior to all of this)so general massages can help c that. Glad you are having things look up.

christine2080 said:

Curlyn,

Curlyn,

Thanks! Surviving the treatment is proving to be quite the challenge! My goal is to keep my husband as comfortable as possible, but lymphedema is something else entirely.

Hi, he is probably still healing. I had radiation to the one side only and it is no picnic.