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Turkey Neck Problems

cid817
Posts: 40
Joined: Oct 2013

My hubby is about 9 weeks out of treatment.  Pet scan is scheduled for Feb 17.  ENT said the turkey neck is side effect from rads, as I have seen so many of you post the same about turkey neck.  ENT put him on an antibiotic and steroid which seemed to help, but only short term. 

The turkey neck is now back quite large and feels solid more than fluid filled.  Voice is getting more hoarse and sleep apnea is very apparent and waking us both up many times during the night.  Does any of this sound "normal" at this stage?

 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Cid,

It's the same old story that everyone is different in how they're affected with lyphedema after treatment. Many here are part of the Turkey Neck club, myself included. It's not unusual for it to be hard. I have a golf ball sized lump (and about as hard as one) under my chin. It varies in size day to day but when it's swollen, it causes discomfort. At only 9 weeks post treatment your husband has a long way to go before reaching the "new normal". I've been told the lymphedema eventually resolves as the body finds alternate pathways for the fluid and mine has gotten a little better over time. Ask about massage therapy. There's a post about this in the Super Thread as well. Of course consult with the doctors before doing it. There are PT's that are trained in this specifically and you can get compression bandages that he can wear at night to help as well (I have a couple. Looks funny as hell but it helps). My fiance' does the massage for me when it's bad and I've learned how to do it as well and it helps but time is really the answer. The voice getting hoarse is pretty common but I would discuss the sleep apnea with the docs. 

Positive thoughts and prayers

"T"

 

MarineE5
Posts: 754
Joined: Dec 2005

Here is the link to the exercises and massage that "T" mentioned in the Super Thread.

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

My Best to Both of You and Everyone Here

CivilMatt's picture
CivilMatt
Posts: 2965
Joined: May 2012

cid817,

I am feeling my edema filled neck and it feels plump but pliable, not solid.  I think the turkey neck is greater when the tides out on the edema.  Mine never hurts and response well to light massage.

Insurance usually covers a number of visits and the superthread covers the procedure quite well.

At 9 weeks post did you say he sounded like a horse or was hoarse?  Either way that sounds normal.  I still have trouble regulating the volume; it is either too quiet or too loud.

As for sleep apnea, get it checked if serious.

Matt

cid817
Posts: 40
Joined: Oct 2013

After speaking with the ENT nurse, she suggested going to get a CAT scan.  Results were good & doc put him on prednisone which has already helped it go down some.  It was red and very swollen. It doesn't help that he has to wear a suit & tie for work.

He was able to get an appt with the ENT early next week so we will ask about the PT, massage, compression bandages and sleep apnea. Apnea seems better now with the swelling subsiding, or the tide going out. Wink Thanks for the link for the massage MarineE5 (hubby also is Marine, retired).

Matt, he does sound a bit like a horse when he's hoarse, even when he's not hoarse! Tongue Out

Thanks for the info, support and encouragement.  Helps so much. You all are great! 

Cindy

 

hlrowe
Posts: 23
Joined: Oct 2012

Most therapists aren't certified for head and neck. Make sure the one you see is! I was 8 weeks out when my lemphedema occurred. Kinda freaked me out because I wasn't warned it could happen. I would NOT do any masages based on internet advice even if it seems correct. See the therapist first. It is very important to do the massages correctly the first time, and most importantly do only the massages your husband needs. 

I'm 18 months post TX and I don't massage any longer. I do sleep on a double pillow to make sure the nodes drain well during the night.

debbiejeanne's picture
debbiejeanne
Posts: 2436
Joined: Jan 2010

my last rad tx was 10/22/09.  then had neck dissection and laryngectomy 2/28/12.  i still have turkey neck.  it is the size of a golf ball and soft around the edges but hard in the center.  i wear 2 differenct compression bandages.  i wear one for 3 hours at a time and the other for 1 hour. they make it softer but do nothing to make it smaller.  i have given up on it getting smaller since so much time has passed, i've just learned to live with it like the other sides effects of tx.  i hope your hubbys will get better.

dj

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