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Morbidity of the neck after head and neck cancer therapy.
Van Wilgen CP, Dijkstra PU, Van Der Laan BF, Plukker JT, Roodenburg JL. Department of Oral and Maxillofacial Surgery, University Hospital Groningen, Groningen, The Netherlands.

from Head Neck 2004 Sep;26(9):785-91
BACKGROUND: Studies on morbidity of the neck after head and neck cancer therapy are scarcely described.

METHODS: Patients who underwent surgery, including neck dissection, with and without radiation therapy at least 1 year before the study were asked to participate. We assessed neck pain, loss of sensation, range of motion of the cervical spine, and shoulder pain.

RESULTS: Of the 220 patients who were invited, 153 (70%) participated in the study. Neck pain was present in 33% of the patients (n = 51), and shoulder pain was present in 37% of the patients (n = 57). Neuropathic pain of the neck was present in 32% (n = 49); myofascial pain, in 46% (n = 70) ; and joint pain, in 24% (n = 37). Loss of sensation of the neck was present in 65% (n = 99) and was related to type of neck dissection and radiation therapy. Range of motion of the neck was significantly decreased because of the neck dissection and/or radiation therapy in lateral flexion away from the operated side.

CONCLUSIONS: The occurrences of morbidity of the neck after cancer therapy were considerable and consisted of neck pain, loss of sensation, and decreased range of motion.

I would be interested in our members experiences of this, as these problems may not be getting the management deserved. The poll below will help outline the extent of the problem. Thanks.
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Good Morning Garance & Rosalie
I also have the frozen neck/shoulder problem and for a while I would not drive because of the parking difficulties. My answer to this was to fit a rear proximity detection device, one of those contraptions which bleeps when there is something close behind, mine has an indicator which shows the distance to the nearest object behind.
To reverse park I lower the door mirrors so that I can see the white lines ,or pavement edge, and use only the mirrors I make no attempt to turn my head.
With the aid of this gadget I changed from being a lifelong failure at reverse parking to an expert in the space of a couple of weeks, I can put the car central between the white lines of a parking bay and six inches from the nearest object behind ( even if it is only a cat refusing to surrender territory--as cats do)
The gadget cost£40 but i don't know what the fitting cost would be (i installed mine myself)
If you are in any doubt about using only the mirrors watch a driver park an artic.he won't turn round.
let me know if you want any details about the device.
Keep Smiling Razzer
Hi fellow drivers!
I am in the process of learning to be driving instructor. I had to take and advanced driving test just after Christmas. To make my manouvres easier I have a very large rearview mirror. I still had to turn my neck (very uncomfortable!)
to show that I was "safe" but the large mirror is a godsend for normal driving and reverse parking.
As you say John, it can all be done with mirrors!
Anne W

I also angle my electric mirrors down to check where the white line is when parking, as I think that it is safer to reverse into a parking space, so that you don't have to reverse out. For a long time I complained bitterly about the extremely poor visibility in my car, a 2 seater convertible, because the roof blocked of so much of my view of the road. It's only since I have found it easier to turn my head that I have realised that really the majority of the problem was that I couldn't move very well, so I couldn't lean forwards to see better, or look out of the back window. I even considered trading my car in for a different model. I don't know why it never occured to me that the problems I was having were associated with the radiotherapy. I lost a great deal of confidence in myself, and in my driving ability, which is only slowly returning.

My husband is looking at fitting aspheric glass for my mirrors. Aspheric glass is curved at the outside edge of the mirror, thereby extending the field of vision. It is worth asking your garage if they do this glass for your car. It is not available for mine, but as my husband works in the industry he is hoping to be able to put together something to fit my car.

Good Evening Jenni,
Thanks for your tip about aspheric glass but I really do manage very well with the bleeper, the main mirror and two door mirrors angled downwards.When it comes to gadgetry my wife tends to back off, she thinks my cash machine (speed camera)detector is not playing the game and she prefers to guess which way to turn rather than take note of the sat nav but she thinks the proximity detector is a wonderfull idea and she trusts it implicitly. The door mirrors in our car have the outer 25% angled outwards to increase the field of vision so I suppose we are halfway to aspheric. I was spared radiation but I still have the neck and shoulder problems due to the incision which started behind the right ear down to the shoulder, turning at a right angle to the centre line of the throat and curving upwards to the chin, the usual carpentry when they want to remove all the lymph nodes and most of the jaw.I can well imagine the additional problems caused by radiation.The best therapy I have found is a glass of red wine, it dulls the shoulder pain, helps to avoid lightning strikes and wards off herds of marauding toadstools.I open a bottle at 8pm and I have just noticed it is quarter past so I will wish a pleasant evening Jenni.
Keep Smiling Razzer
Of the 28 participants so far who did the poll:
  • 22 had radiotherapy with the following side effects: neck pain (15 or 68%), shoulder pain (10 or 45%) and jaw pain (16 or 72%)
  • 20 had neck dissection with the following side effects: neck pain (12 or 60%), shoulder pain (15 or 75%) and jaw pain (7 or 35%)
  • 28 had radiotherapy and/or neck dissection, with the following side effect: significantly decreased range of motion of the neck (19 or 68%)

  • 13 (or 46%) were not warned of these side effects
  • 21 (or 75%) were not offered help with managing these side effects

We can see that side effects of treatment are common. Jaw pain after radiotherapy appears common while shoulder pain after neck dissection appears common. 75% of participants did not get help to manage their side effects better Thinking
Last edited by drvinodkjoshi
Pain Predicts Survival After Head and Neck Cancer Treatment
From Medscape Medical News, by Nick Mulcahy

August 18, 2009 — Patients with head and neck cancer who experience little or no posttreatment pain have a higher survival rate than those who experience an intermediate or high level of posttreatment pain, according to a study in the August issue of the Archives of Otolaryngology–Head & Neck Surgery.

Specifically, the 5-year survival rate was significantly higher for patients with no/low posttreatment pain, at 81.8% compared with 65.1% for those with intermediate/high pain (P = .04), reported investigators from the University of Iowa College of Medicine in Iowa City.

In addition, a higher pain level was associated with recurrence in the first year after treatment. The mean pain score for those who experienced recurrence in the first year was significantly greater than the mean score of those who did not have recurrence (2.9 vs 1.4; P = .006).

"The onset of pain or an increase in pain should therefore prompt an aggressive workup for recurrent disease," advise the authors, led by Joseph Scharf, MD, from the department of otolaryngology, head and neck surgery.

The onset of pain or an increase in pain should therefore prompt an aggressive workup for recurrent disease
The new study's findings are especially important, write the authors, because posttreatment pain has often been "underreported by patients with head and neck cancer and marginalized by health care providers."

The study has one limitation that is of particular note: the single item on a patient questionnaire that captured pain did not differentiate between head and neck pain and other bodily pain. However, the authors note that it is "unlikely" that results would have shown an association among pain, recurrence, and survival if pain unrelated to the head and neck cancer was a "substantial problem."

Study Details

The new study comes from the University of Iowa's Head and Neck Cancer Outcomes Assessment Project, which enrolled patients between 1998 and 2001. Self-reported pain was measured at diagnosis and 3, 6, 9, and 12 months later.

At each self-report, patients indicated their average level of pain during the previous 4 weeks, using a scale from 0 to 10. In the analyses, pain scores were presented as none (0), low (1 – 3), intermediate (4 – 6), or high (7 – 10).

Of 339 patients in the analysis, most had primary disease (84.4%) or advanced-stage disease (59.9%), and the most common malignancies were oral cavity (42.2%) or laryngeal (23.3%) tumors. Most of the patients received either surgical treatment alone (37.2%) or surgery combined with radiotherapy (37.7%). About 13% received radiation alone; very few patients received any form of chemotherapy.

The results revealed trends in pain levels during the first year of follow-up: the mean pain level decreased from 2.7 at 3 months to 1.6 at 12 months. The percentage of patients reporting no pain increased from 45.9% at pretreatment to 61.4% at 12 months. However, about 10% of patients reported high levels of pain throughout the 1-year period.

Let Staff Collect Pain Information

The study results also indicated that a higher level of pain was also associated with younger age at diagnosis, worse general physical and mental health, and higher levels of depressive symptoms, as well as 5-year survival rate and recurrence within the first year.

Monitoring pain should be part of routine oncologic surveillance, note the authors. "The Joint Commission's requirement that pain be assessed as a 'fifth vital sign' may provide the means for documenting pain and identifying changes in pain levels across time," the authors write.

The Joint Commission's requirement that pain be assessed as a 'fifth vital sign' may provide the means for documenting pain. Who should perform this assessment? The authors suggest that it should be staff other than the physician, so that "patients might more freely communicate this complaint."

The study was supported in part by a grant from the National Institutes of Health, Office of Cancer Survivorship. The authors have disclosed no relevant financial relationships.

Arch Otolaryngol Head Neck Surg. 2009;135[8]:789–794.

Nick Mulcahy is a senior journalist for Medscape Hematology-Oncology. Medscape Medical News © 2009
This is not cheering me up! I had loads of pain after the neck dissection 5 years ago and am having loads of pain after the recent radiotherapy. I have had three lots of mouth cancer. Does this mean I've had it then? Can someone just clarify what all this actually means or should I just start ordering the funeral?
Of course I shall be ignoring this unless someone can actually tell me how it helps!
Pain Predicts Survival After Head and Neck Cancer Treatment
From Medscape Medical News, by Nick Mulcahy

The higher level of pain was associated with younger age at diagnosis, worse general physical and mental health, and higher levels of depressive symptoms, as well as 5-year survival rate and recurrence within the first year. It just means that increasing pains during the first 12 months following treatment could be due to a recurrence. That would seem obvious.

It doesn't refer to the chronic pain that head and neck cancer patients experience.
Well Anthony,
I had an enormous amount of pain after my RND (rhs).My right shoulder and arm were v painful too The nerves were either damaged or irritated/agitated by the surgery. It lasted months and vastly contributed to a deep(death wish) depression. The radiotherapy was something else to overcome too!- pain and discomfort wise. The morphine patches were effective but left me very dozy and nauseous.
The morphine related constipation had me crying on the loo!!
Long story short - nearly 5 years on - I suffer a lot of discomfort from time to time but so what! I am here for a long time to come. I get on with a really normal life now - and to be honest that is all I want.
cheers Tony K
I had stage IV head and neck cancer. 3 all day chemos and 35 Radiations. Occult origin.

It's almost 2 years now. Suddenly if I yawn I might lock up totally. The pain is severe, intense, the cramp is worse. It pulls, and you cannot function. I feel like falling on the floor.

The same type of pain but more intense if it's possible, happens if I look down. I have fentynal patches. I dare not look at them, just above my nipples. I have to move them I think. That pain/cramp can put you into screaming mode. OMG no one should have that.

I'm so hoping it might go away. For now I do not look down, and I do not yawn.
Well done John,
2 years and many more to come. The radiated area can be v close (or include) the top of the spine and effect the nerves there. When you move your head down it "shocks" the nerves so you feel an uncomfortable feeling down to your legs.It really worried me til my rt consultant explained it. It went away after a few months after my RT. It's called l'hermittes sign/syndrome.
I get the odd painful spasm in the neck as I yawn or physically exert that area.
Your symptoms seem far worse. It certainly should ease over time.
I hated fentanyl patches. Made me feel nauseous and dozy.And as for the constipation!! I preferred to feel the pain!

You've done well -no surgery side effects. Lots of life to look forward to.
Good luck Tony K
Last edited by tonyk 2
Hi Tony and John

I have L'hermittes syndrome, very weird - but not exactly pain, more noticable when I exercise or look down. I test if I've still got it by looking down! Noticed it about a couple of months post treatment, and now I'm just over a year post treatment but it's still there. I thought it was almost gone, but I've recently tried to return to running, but various bits of me refused to work well (think it's more of an age thing than a treatment thing), and the l'hermittes came back worse, so I gave up!!!
John - I think you should tell your consultant about the l'hermittes, as it shouldn't hurt, just sort of buzz/vibrate.
Good luck!
Not suree if its connected, but after years of diiferent Consultants I have vibratinfg in my feet all the time and numbness which can bet very painful at night.
Was told lonf term effect of radiotherpathy.
The nervers in my spine are not sending the right messages to my feet ?
It is very unsettling to me specially when I am out and look around to see if anyone else feels the vibrations Smiler


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