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Neck Very Puffy After Treatment is Over

HobbsDoggy
Posts: 165
Joined: Feb 2013

Hi all. I cannot tell you how much your replies mean and how much they provide me with the feeling that I am not alone.

I am 8 weeks out from last radiation and chemo. Stage IV neck, unknown primary. I had 7 weeks radiation and chemo. Last week I woke with my neck very puffy on the left side, where I had a neck dissection. It was very puffy, not overly tender just puffed out. I went to the doctor who "guessed" that I had a cold or sinus infection that just went to my neck as my neck if vulnerable from treatment. Gave me some antibiotics. Puffiness went down.

I was have been very tired last two days and slept more than usual. Woke up this afternoon with puffy neck, about twice the size aa usual. Anyone else every had a puffy neck like this and what did you do for it? Doc assured me it was not cancer returned and that just sort of part of the deal. Does that make sense to everyone?

Thanks

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Not cancer.  Do a search on this board for edema.  We've literally all had it, after treatment. It subsides with time.  It is partly due to poor lymphatic drainage, and is the worst after lying down. You will find various discussions on massage and neck supports and the like, to assist you with reducing edema.

Deb

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

my radiation doc gave me a card with the name of a specialist who works totally with the edema caused by treatments.  Massage seems to relieve it.  But as Deb said, gravity seems to help it, once you're up and moving around.  This will right itself once the lymph nodes figure out another route to drain.

p

CivilMatt's picture
CivilMatt
Posts: 2802
Joined: May 2012

Hobbsdoggy,

 

Like Deb mentioned, edema of the lymphatic system.  There is a good link in  the Superthread about  neck massage.  Often insurance will cover a few visits.

 

Matt

MarineE5
Posts: 743
Joined: Dec 2005

HobbsDoggy,

When you sleep, try keeping your head and neck area above you heart level. Use a foam wedge or put some pillows under your shoulders, neck and head so you are in an incline. The fliuds from the Lymphnode system won't flow toward your neck as much.

Gravity is in our favor during the day as we walk around and the fluid drains down. As mentioned, a gentle massage will start the fluids to flow and should last for a few hours when done correctly. You had a neck disection and it takes a little bit for the Lymphnode system to re-route itself. As mentioned above, try the stretching exercises and gentle massage. Here is the link to it......

 http://csn.cancer.org/node/196680

My Best to You and Everyone Here

HobbsDoggy
Posts: 165
Joined: Feb 2013

Thanks all for your input.  I thought it was interesting that my cancer doc did not bring any of this up.  I am going to quiz him more closely.  I think he would have know this stuff.  I am going back to Cleveland Clinic for a follow up second opinion about some stuff and will bring this up with them also, they are much better than the local doctors when it comes to this sort of thing.  You guys are the best! 

Dr.Ed
Posts: 22
Joined: Jan 2013

what I had was lymphedema and I joked with my kids about my turkey neck. I was pretty swollen this way for several months. I don't know if thats what is happening for you but if your doc says thats it there are special massage techniques for it (like phrannie51 mentioned) I was seen by PT and they gave me alot of info. It's almost all gone now, good luck with it..Ed

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Once the swelling calms down, did  you all still sleep with the wedge pillows? Or was that tempory?

We are looking at getting anew bed, but wondering if adjustable might not be a bad idea.. If its a permanent solution.

Kari

MarineE5
Posts: 743
Joined: Dec 2005

Kari,

The short answer for me is YES, I currently sleep laying flat with one pillow like I did before. The issue I still have and probably others here may experience the same thing, is any physical work we do. The Lymphnode system flows to the area doing the work, shoulders and chest area, just like the blood does. With lymphnodes missing from the neck disections, the lymph system begins to back up.

The Lymph system fluids move at 1/3 the speed of our blood and it is located just below our skin surface, hence the gentle massage verses a deep muscle massage. My Lymphedema didn't start right away, actually 8 months after my Surgery and 3 months after the final radiation treatment. Learning the massage has really helped me as I try to be active, so I tend to swell up the next day after any long activity that includes me bending down or getting under something. I do the massage and it works well for me. I hope that this is of some help to you.

My Best to You and Everyone Here 

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

I considered getting an ajustable bed, but I find the wedge to be easy to use and comfy.  And it doesn't interfere with my husband's sleep.

Deb

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I hate waking up with a wedgie....

Oh, sorry, I must have read this wrong, LOL....

Hope you and the hubby are OK.... (even if you are giving him the wedge...)

JG

hlrowe
Posts: 23
Joined: Oct 2012

I was 8 weeks post tx when my neck swelled. i freaked out because neither my MO or RO mentioned that as a side effect. They probably don't because not everyone gets it. I finished tx June 12th. I sleep on a double pillow and my neck is pretty hard on both sides under my chin when I first wake up. I saw a certified head and neck lymphedema therapist who gave me 6 massages to do every morning. That, and gravity loosens the neck up during the day. There is always some swelling present but no one even notices it. It may or may not get better over time. Just part of my new normal. I'm not complaining though!

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Definitely better than the alternative right....

Most of us that had rads get it, and most of us eventually get rid of it to some degree, others more so than everyone.

Massage, Tai Chi, or just time usually aids in that...

Welcome to the club HR...

JG

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