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laryngectomy and neck dissection

charm1218
Posts: 3
Joined: Sep 2013

My husband had a complete laryngectomy and neck dissection in June 2013.  He is recovering well at 3 months post surgery.  However, the swelling/fluid retention from the neck dissection is still a large area of concern.  His surgeon states that nothing but time will re-channel the lymph structure in his neck.  He started massage therapy a couple of weeks ago.  He's had 4 sessions so far, which is helping with the mobility problems in his neck and shoulders.  There seems to be more fluidity in his face and jaws (less tight), but the fluid isn't finding its way to the lymph structure.

Does anyone have personal experience in recovery from a neck dissection and the resulting fluid retention issues?  Are we just being impatient?  Are there any other forms of physical therapy?  Any nutritional suggestions?  He tries to eat an occassional small meal, but mainly relies on his PEG tube.  We have realized that he needs to stay completely away from salt.

So many questions!

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi Charm.

Welcome. This is a great site for info and support. 

So.... what we call turkey neck (gobble gobble ). Yes, many here deal with it. I'm 5 months post treatment, Tx N2b MO Stage IV SCC HPV+, a few surgeries including a selective neck dissection. While mine is not severe, I still have some lymphedema issues but they're slowly getting better. Mostly bad in the mornings from sleeping prone. Time will help. Massage definitely will help. Do the exercises for both the jaw and neck as well as any given for nerve issues in the shoulder from the surgery to keep things moving and limber. 

Positive thoughts and prayers

"T"

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

because this will eventually pass.  I'm an expert at lymphedema.  I have had, at various timecks, a neck dissection,  35 rad sessions, a 14 hour commando operation involving removal off the floor of my mouth and graft reconstruction,  and another 34 rad sessions.  So you can about imagine how much lymphedema I had after the last treatment, lol.  The area under my  chin was about the size of a softball, and hard as a rock/  Within  a year things still returned to "normal", by that i mean I don't have visible lymphedema.  Time does a marvelous job of healing us.

 

pat

charm1218
Posts: 3
Joined: Sep 2013

Double post...oops

charm1218
Posts: 3
Joined: Sep 2013

Thank you for the feedback and support.  Just when we thought we had radiation and chemotherapy figured out, then the whole new world of neck dissection and laryngectomy is thrown our direction.  I have been reading intermittently on support boards and researching, but it was simply time to ask some specifics.  Your timely responses are so very much appreciated!

Aside from the physical recovery, the mental is far worse.  We've been together 25 years and you would think that a devoted wife would know what to do to keep her husband's spirits lifted.  It's apparent that time is going to heal all wounds...physical and mental.

I'm sure you will be hearing more from me as I begin to feel more comfortable posting. 

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

charm, was dx w/larynx cancer in 8/09.  had 35 rad tx.  then in feb 2012, recurrence.  2/28 had 2 neck disections, reconstructive surgey w/graft and complete laryngectomy.  my chin is still the size of a baseball.  i currently wear a chin wrap to help it.  it has helped a little so far, about 2 weeks.  i wear the wrap 3 hours a day, then i have another one i wear for an hour a day.  like i said, small change but nothing to brag about.  if u find something that helps, i'd love 2 know.  good luck.

dj

CivilMatt's picture
CivilMatt
Posts: 3088
Joined: May 2012

Charm,

Welcome to the H&&N forum where a swollen neck is fashionable.

Edema is something I have wondered about too, but I have been assured by top minds that this is normal.  I went through the massages and learned the exercises and they do help.  I have a mask, but never wore it, it freaked me out.

I use to judge a person’s age by how their neck looked, I think I will have to revisit my age formula.

Salt, I cannot get enough of salt.  It is one thing I taste well.   Everything in moderation, but no salt, well forget it.

25 years?  Just ask him what he wants.  My wife knows I like steak (with salt), so I get a steak once in a while.  My lists of likes is small, it doesn’t take much to please me.

Good luck, all-a-round.

Matt

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