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lymphedema

CEMunger
Posts: 15
Joined: Jul 2013

I am 6 weeks post radiation treatment after rhinectomy. The swelling around my eyes is especially bad, my whole face not AS bad. My ENT said the other day that it was lymphedema and could be treated with facial massages. Does anyone have any info to give me a little clue? 
Does anyone else get non-answers from your medical teams? I feel like I've been swinging in the breeze since before surgery.

phrannie51's picture
phrannie51
Posts: 3981
Joined: Mar 2012

non-answers because they really don't know.....they know their jobs....the Oncologist knows chemo....the MO knows radiation....but all the crap that goes with getting those two things is a mystery to them.  Coming here is where I learned the most about getting through all the stuff.

I don't know where you're located, but here (Podunk, Montana) we have two therapists who specialize in lymphedema massage....mine was paid for by my insurance.....if the Dr.'s can't point you in the right direction, maybe talking to another cancer patient....HNC isn't the only cancer that causes lymphedema.

p

CivilMatt's picture
CivilMatt
Posts: 3241
Joined: May 2012

CEM,

My insurance paid for a number of massages.  It is easy to get the hang of how to  do it.  There is also a description in the Superthread on the 1, 2, 3’s of massage.

When I mentioned the edema to my rad onc last month she asked if I wanted her to prescribe more.  I did not, but they do feel great.

Matt

hrowe
Posts: 51
Joined: Oct 2012

Have your rad onc order a therapist. Insurance will cover. Make SURE the therapist is Head and Neck certified! Most therapists only do limbs because that is the most common occcurence.  He/she will teach you the PROPER massage techniques. Make sure to sleep on double pillows which allow the lymph nodes to drain better. The therapist may even order you a Jovi pak to sleep in and/or wear in the evening. In many instances the lymph modes will reroute over time and the swelling will become reduced or even go away. My swelling in the neck went away around 15 months post tx.

MarineE5
Posts: 777
Joined: Dec 2005

This is the link to some instructions for you to try until you get to a Cancer Physical Therapist if you choose to see one.

http://csn.cancer.org/node/196680

My Best to You and Everyone Here

ratface's picture
ratface
Posts: 1257
Joined: Aug 2009

Like others have stated there are massage therapists who specialize in this technique. It's a very light massage which starts at the lower extremeties and works it's way up. We drain like a sausage casing, squeeze some to the bottom and shove some more in. It is very common in breast cancer so that is where I would start to find a contact. Also wound care centers and cardio rehab centers have them on staff. There is a company called, "Solaris" which is online. They sell many different types of compression garments that will do the same thing while you sleep. Some are OTC and the more expensive ones would actually be measured by your massage therapist and they would make it to specifications.  My insurance paid for the massages and I went for about eight sessions which really helped get things moving again. They would not pay for the compression mask. It will all work itself out in about six months either way. All the best to you.

CEMunger
Posts: 15
Joined: Jul 2013

Thank you to all those that responded. I start massage therapy tomorrow. Another step on the road to reconstruction! (although, I have to laugh when I think of compression bandages, when I have no nose and my eyes are swollen! I'll be taking selfies! LOL)

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