Just a question to gauge recovery...

I have some lymphedema. Nothing terrible but enough to cause discomfort. Obviously it gets worse after a nights sleep because I'm in a prone position (can't sleep sitting up).

On average, when did it finally improve for you veterans on the board?

"T"

About a year with much lymphatic massage now I am normal relatively speaking.

I had so many surgeries, treatments, never really, but it did improve, but not totally. It is worse again with my gum/tooth infection/abscess. I also believe certain foods, spices, medications effects them, even alcohol, but my limit is one beer, and could be the salivary gland also. I don't know how many lymph's I have left with three neck dissections, but there could be a few rebels still around, and the H&N have about 300 lymph nodes, and everyone is different in the amount, and location of them. It also depends on the type of neck dissections, how many levels removed like a selective neck dissection, a modified radical neck dissection or radical neck dissection, there are a few more, not often mentioned, like a limited neck dissection, others, that may be used interchangeably.

I have a sleepimatc type bed, which head and feet raise, and that helps a lot, and notice a difference between that and a flat bed. They also have compression bandages for the head, around the chin, jaw, that helps with lymph drainage. If it helps keeping the mouth closed, which photo apppears, that may also help with dry mouth since most moisture escapes when sleeping with the mouth open.

As mentioned, lymphatic drainage massage, acupuncture, may help, as well as light exercise like walking, swimming, swinging the arms above heart level, a trampoline, even sweating, sauna, steam room get the lymph's flowing, but ask your doctor.

I have the custom made wraps (look like old fashioned tooth ache wraps) that the therapist made while I was in treatment. One is plain and the other has additional foam pieces to help stimulate the fluid to drain. I should pull them out and try sleeping with them.

Like I said, it's not bad. Even my team said it's not bad but it is quite uncomfortable at times. I have heard it's about a year or so before the body finds alternative pathways but I'd like to hear it from the horses mouth so to speak

"T"

Yes, I agree on the 12 month mark. That's about the time it has taken for Kris's lymphoedema to become negligible. He did not have any massage or wear the pressure garments. He did have 2 neck dissections along with his surgery etc.
Tammy

I am about a year out of my neck dissection and I still have mine. I am having massage therapy and it is helping...I also have the wraps that my therapist made for me. My onocologist said it could take up to 2 years to go away....