Hi,

It's been 3 months since my Dad's bilateral ND. His neck/chin at times is hard as a rock.

Is this normal? any suggestions?

We've been massaging it with Lubriderm cream and he does his neck stretches. (When things get tight and swell he feels like he's being choked).

Thanks
LisaB

Lisa,

My docs warned me of "wooden neck". That visual kept me very motivated. It sounds like you're doing the right things, yet seeing no improvement. I would speak to the doctors, and possibly discuss some physical therapy. Good luck
Rob

Robs surgeon said his "hard neck"was fliud ,and would disperse after about six months.

Lisa,

I too have a very hard stiff neck, especially on the left side, I had a left ND. I do stretches several times through out the day. I have been going to physical therapy again, and that helps but is quite painful. My Drs say it's fibrosis and scarring of the SCM and tendons, brought on by the ND and RT. The physical/massage therapy makes it feel better temporarily, but it will be this way for the rest of my life. At home my wife rubs it with lotion and that helps a great deal too.

I know this doesn't help you much, mainly just confirms your Dad is normal.

Tim

Thanks all!

Yes knowing it's normal does help.

What kind of massaging do you any of you do?

We really just started the home massaging a couple of weeks ago; we were sort of nervouse to do so earlier.

As for the stretching; the PT showed him a bunch to do. He was doing them regular at first; then maybe not so much after; now he's back to doing them often thru-out the day (as the dr told us this will help with the hard neck).

He said the massaging feels nice.

Thanks again,
LisaB

I went to physical therapy for my neck and it HURT. I probably should go again as it feels like it's hardedned up again but I'm not sure I can face more torture.

The doc who is helping me keep my esophagus open, who treats patients with esophageal and lung cancer mainly except when he gets head and neck patients like me with esophagus problems, said the last time I saw him that the wooden neck does get better over time--very gradually. I was surprised by that since I had assumed it was something that I'd have to deal with for the rest of my life. Any long terms survivors reading this who can speak to this?

Nelie

Nelie,

I have never heard of the neck getting better over time. In fact, I was told just the opposite, that I needed to keep stretching to make sure it didn't get worse. My neck is very stiff and hard on the left side, side of ND, and under my chin has gotten worse over the past year. I know it will stay like this for the rest of my life and I've adjusted. My doc told me the same thing they told Tim, it's fibrosis and scarring and is permanant.

My surg. told me fairly early after surgery...don't recall...maybe 6 weeks or so....that I'd better "massage the heck out of" my neck. He meant breaking up the scar tissue. Scar tissue doesn't stretch, so this sort of massage needs to be done as soon as possible after surgery, to keep it broken up as it heals. My neck feels nearly normal, exc., of course, for the numbness of the skin flap which I honestly do not even feel.

Of course, I did not have rad., but the principle is the same....massage as soon as the dr. will let you, and move the skin around as much as you can to keep it from adhering to the underlying tissues.

I also did plenty of neck stretches and jaw stretches....still do them. .and range of motion exercises.

Maybe this thread will keep others from having this problem. Nobody really told me why I needed to massage......The doctors don't realize that we aren't born knowing this stuff.

This is another area where, if you don't know about it, you'll wait too long.

So true. No one told us the importance of any of this. The physio was set up in the hospital for homecare by the nurse and physio team. The surgeon wasn't even aware that we were having it. We had to ask about massaging. Now one of the resident dr's at the surgeons office is telling us the importance of stretching (makes you mad!). I only know so much because of all the reading I do here.

I just massge the face in a downward motion (showed to us by the surgeon) and the neck in cirlular motions showed to us by another surgeon in the RO's office. Now my Dad is concerned we are doing this wrong. We did think about having lymphatic massage by a professional. He's not having a lot of swelling so not sure if he needs that.

When the neck gets hard and swells the sensation of being choked makes him so nervouse. He's afraid the inside is swelling too (especially after the incident in the hospital); this is of concern and very scary.

Thanks,
LisaB

Hello Lisa B

As we all know, everyone reacts differently. I feel I am very lucky with my neck dissection.

I have full movement and only slight pain. There is no feeling (numbness) on my left side of the neck and up to and including the ear.

My goetee was shaven before surgery and I did not shave post surgery for 2 weeks. I have my goetee back now but shaving was "scary" as I had no feeling and my scar was slightly raised (bump) which is now recedeing back to normal. Feeling is gradually coming back but I do not expect it to ever be as it once was.

My first shave was difficult with no feeling so I did it slow and carefully.

I called it "shaving by color", whick is like paint by number.

If all was "ok" I would keep shaving. If I saw color (blood) I new I had to ease up on the tension.

Now I call it "adventures in shaving". Just something to amuse myself as I deal with my "new normals.

I drool a lot and at first it was upsetting. But after reading so many dry mouth stories I thank God that I still have the ability to drool.

Now, about my teeth (or no teeth). I'm trying to think of a "positive " for that.

So far I have found that It's easier to say no to door to door food sales people.

I still buy girls scout cookis to give away. How could I ever say no to that!

Shaving by color in So. Florida. Petey

PS: Iwas going to send the thread "Massage technique tips" but I see you have read it already.