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Neck dissection before radiation #36805
08-04-2003 07:09 AM
08-04-2003 07:09 AM
Joined: Jan 2003
Posts: 109
Kansas
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WZ Offline OP
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WZ  Offline OP
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I have a question to those who had neck dissection prior to the radiation treatment.

It has been almost 12 months since my surgery and 10 months since radiation, but the tightness/stiffness of my neck still bothering me a lot. What made me worry is that the tightness did not decrease a bit, but rather intensified a lot. My neck is so hard that it feels like someone has stuck a piece of wood chip in there. Actually, it is more difficult to turn left/right or up/down NOW than 6 months ago.

I thought the tissue scaring process should be over long time ago. I do not know why my neck still gets harder and harder, sometime, I feel my throat is constricted too. My question is that: does anybody else have the same feeling ?


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: Neck dissection before radiation #36806
08-04-2003 08:47 AM
08-04-2003 08:47 AM

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Oh, yeh WZ - for the second time in a couple of days I am wildly waving my hand in the air yelling "me too"...I'm almost 2 years out from surgery as of October.

You describe my symptoms, plus I am extremely sensitive across my chest to my shoulder/collar bone area. They said it was nerves coming back and I guess I can't argue with that...just wish they'd get back and stay back.

Guess I didn't question the throat getting harder and tighter, been dealing with a sub mandibular gland that isn't reacting to radiation too well, hoping not to lose it.

As I've said before, "radiation"; the gift that keeps on giving.

Glad you posted, it really helps me to know someone else out there is going through the same things. People don't quite understand when you say you can't turn your head to look at something. Maybe there will be a post that will enlighten both of us.

Take care,
Dinah

Re: Neck dissection before radiation #36807
08-04-2003 12:27 PM
08-04-2003 12:27 PM
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Posts: 234
Wilmington, Delaware
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WZ,

I don't know how much this will help at this point since my surgery was almost three years ago. My neck and the area where they took the tissue to recreate the floor of my mouth are still a tad sore/hard to date. Every once in awhile I'll get a sharp pain, but it only lasts a minute.

About six months after my surgery my neck got so stiff that I could hardly turn my head. I went to a plastic surgeon and had steriods shot into my scars to break up the tissue. This was done two times on the scar from my ear to collar bone, and once on the one that runs up underneath my chin. I felt relief within 24 hours and have suffered no mobility problems since then. The shots hurt like the you know what, but it was well worth it.

Hope this helps.

Anne.


Anne G.Younger
Life has never been better.
Re: Neck dissection before radiation #36808
08-04-2003 04:46 PM
08-04-2003 04:46 PM
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Estevan Saskatchewan, Canada
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I'm not sure if anyone has tried Massage Therapy for the stiffness in the neck, shoulder and chest area as well as the numbness. It works well for me as long as I do not go to long in between treatments. I was also given a brace that keeps my shoulder pulled back which relieves the stress on the remaining muscle and the over compensation of the muscles on the other side. Something you may want to try.
David

Re: Neck dissection before radiation #36809
08-04-2003 05:18 PM
08-04-2003 05:18 PM
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Posts: 458
Solvang CA
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Solvang CA
Oh yes, WZ,have the same problem also. Not at all comfortable the tighness around the neck. On top of that all, the last time I went for check up, the ENT checks, says everything is normal. Radiaton oncologist says the hardness shouldn't be that bad because of using IMRT and hyper fractional dosage. I had tried previously to get some medicinal relief, doc tried muscle relaxers, that didn't work.

I just try stretching a couple of times a day, up down left right. Dont' know that it's helping the tighness, but at least trying to keep range of motion.

The massage therapy does sound like a good excuse to go out for a massage, problem here is they don't know gentle, just the kind that really beats one up. And as soon as they take a look at my neck and shoulders, they don't really want to mess with it because they are afraid they'll hurt me.

A problem I've been having I'm not too familiar with is swelling along jawline, both side. Looking kind of jowly. Would I be correct in assuming that's the salivary glands or lymphatic fluid buildup? Any help would be appreciated.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
Re: Neck dissection before radiation #36810
08-05-2003 01:17 AM
08-05-2003 01:17 AM
Joined: Jan 2003
Posts: 109
Kansas
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WZ Offline OP
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Kansas
Bob, if your swelling is worse in the morning but getting better in the afternoon, I think it is lymphatic fluid, that how I experienced. After 8 months, the lymphatic fluid under my chin was finally gone, then I started to feel this strange aching in my mandible bone now. Has done a bone scan, will do biopsy in a few days. I am very very nervous now. Real difficult to handle the "here we go again" situation.


WZ | Stage 4, Tonsillar Cancer Aug, 2002
Re: Neck dissection before radiation #36811
08-05-2003 06:19 AM
08-05-2003 06:19 AM
Joined: Jul 2003
Posts: 17
San Antonio Tx
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Hi,Bob, I guess all of us who have a neck dissection go through the same thing.I had to take physical therapy to get side to side motion in my neck and mobility in my sholder.Also had three bouts with cellulitis with hospital stays for intravenious antibiotics,then they came to the conclusion it was lymphatic fluid that was stagnating. There is a name for this but I forgot it.It will get better as time goes by.I have also found the stiffness gets better as the day goes by.In March my plastic surgeon went in and cleared out a lot of scar tissue and redefined my scar.He did a beautiful job and my neck looks almost normal. Has anyone else had this done? It really helped with the stiff neck. Gwen :rolleyes:

Re: Neck dissection before radiation #36812
08-06-2003 05:27 PM
08-06-2003 05:27 PM
Joined: Nov 2002
Posts: 458
Solvang CA
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JetAgeHobo Offline
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Joined: Nov 2002
Posts: 458
Solvang CA
Gwen, thinking about doing plastic surgery for the scar from the second neck dissection. Guess the doc was in a hurry when he closed and didn't do a very nice staple job, left a beaut of a bump. But, want to wait for a couple of years or two to see if this is really over with. Regular ENT wasn't too pleased when he saw it.

Plus, don't know if that would be covered by the health insurance, so need to save up for that one.
Bob S.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
Re: Neck dissection before radiation #36813
08-09-2003 02:23 AM
08-09-2003 02:23 AM
Joined: Mar 2003
Posts: 1,377
Minnesota, land of 10,000 taxe...
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Mark Offline
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Minnesota, land of 10,000 taxe...
All of the things you all have described I have had to some extent. The head turning mobility has continued to improve even two years plus after treatment. Also is seems like a little fatty tissue is now present under the skin of my neck which makes it feel less hard.

I found that the stiffness can be aggrevated by both stress and too much stretching! The muscles tendons and scar tissues seem to get ticked off if I stretch too much and they rebel by getting tighter. I have taken Diazepam on these occasions and 5mg is required to have an effect (you don't want to drive for a few hours).

As for the aches and jaw pain, I have had episodes with that as well. Every time there is pain I wonder....Doc says it is all normal....strangely the pains are more common the few weeks before Dr. visits. I have concluded that mental stress definately makes things worse.

Massage helps but only very gentle massage in the surgery/rad area. Lymph can be made to move by gentle repeated finger tip strokes toward the area that has no scarring. Seek trained specialists in lymph edema (some Physical Therapists have had this training)

Certain things touching the scar area now feel like an electric shock. This is a change that has recently happened. The bottom line is you can expect things to be changing and feel different for quite some time.


Mark, 19 Years survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.

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