Hello folks; For the the past month I have been working with the radiation oncologist to figure out why I have severe radiating neck pain on the right side. Both sides were radiated, but the rt. side took the boosts because the nodes were there. At this point it has begun to involve my shoulder and arm and there is a decreased range of motion and pain there as well.
He has put me on a course of neurontin, and I have heard from others that this has a good chance of being effective. In the meantime I continue to take Tylenol#3 about 4/daily to take the edge off the pain. I hate taking analgesics so I am usually undermedicated and experiencing more discomfort, but that's my choice. The family Doc thinks I should go back on hydromorphone (Dilaudid) but that really does a number on my concentration.
So the choice between "concentration and constipation" is a tricky one for sure. (Pardon my candor)
The Onc. thinks there may be early mets in the neural pathway, or just an irritated response to the assault of the rads. I have an MRI booked in 10 days.
I would appreciate any insight/feedback folks have on this issue.
Cheers, Fran

Fran,

I've occasionally had radiating pain through my neck and into my arm that has lasted for a number of weeks. In my case, the scans have shown some nerve compression and arthritis in the cervical spine region, but nothing more suspicious than that. I've tried to focus on stretching exercises and generally the pain has subsided after awhile.

Cathy

Thanks Cathy, I will ask them to check that out when they read the MRI. It's hard to believe sometimes that every pain we have isn't the cancer returning. Hanging on to wellness is an art. I appreciate you input.
Cheers, Fran

Hi Fran,
Did you have PT? I had back and neck pain and PT really helped.

Take care,
Eileen

Hi Eileen; No I haven't had physio...but my very best friend is a PT so that's another good avenue for me to follow.
Many thanks,
Cheers, Fran

Fran, I had and continue to have some pain in the right shoulder area post-radical neck dissection. Did you have surgery? Part of my problem, I was told, was atrophy due to not using the muscles after surgery. You may have been favoring the side with the nodes and that may have contributed to the discomfort. Physical therapy helped me a lot to reduce the pain.

Thanks Kirk; I have an appt in the next two weeks with the whole "Head and Neck" team at the Cancer Center. I will certainly ask them about initiating physio. In the meantime, I think my dear friend who is in the profession can give me a few exercises to perform while I wait.
No, I haven't had surgery other than the 3 node biopsies on the right side.
Appreciate the feedback,
Cheers, Fran

Hello Fran,

I had no pain in my neck or shoulder post treatment. I wanted you to know I am hoping that mri comes back clean. How long after the mri til you get the results? Am thinking of you and hoping for the best news from the mri.

Danny Boy

Fran,

Sorry to hear of the ongoing pain issues you are dealng with. I did not have surgery and I have had some neck, shoulder and arm pains almost all the time since radiation. I have not tried Neurontin but I do take Bextra (after Vioxx was pulled) daily and an occasional Loritab when it really bothers me. I also have had surgery on my collarbone to separate the AC joint and remove a piece of the collarbone because of the pain in the joint. I have been through about 3 rounds of PT and no matter what I have tried, I still get some pain on the side that was radiated most (where the cancerous lymph nodes were). I also get some tingling in my chin and my left hand. I have decided it is just one of those things that is here to remind me of the battles won!

I have even had a PET/Ct scan that showed no cancer issues causing the pain. I had a separate bone scan and MRI that only showed arthritis and some bursitis in the shoulder area. When I realized that I was having difficulty in sorting out the pain from all the earlier injuries from the radiation pain from the arthritis and "getting older" stuff, I decided it was just a part of my life now. And a grand life it is!


Ed

What good support there is in this forum!
My MRI is on th 18th and I meet with the Docs on the 25th. That was an "urgent" booking.
Someone gave me a hint about alternating hot and cold packs...but that seems to do little. Rest, or perhaps the immobility seems to calm the area down, but the tylenol#3s do take the edge off. It is as puzzling to me as it is to the docs at this point, but it does interfere with my quality of life and I will squawk shamelessly until they help find a resolution to the pain. How's that for ornery!
We are helping educate the medical side with our input about this unique form of cancer.
Thanks for the feedback,
Cheers,
Fran

Fran,
I'm sorry about your pain.
I've statrted noticing a pain and weakness on my shoulder and arm. My dr. told me it was from the neck dissection, and that he would send me to a physical therapist once I was feeling better (I am recovering from a kidney operation in November).But you did not have neck surgery, did you?
The weakness of my arm worries me. i have a hard time getting dressed because of it, and since it is getting worse, I wonder how bad it will be. And the thought of having to add another medical appointment to my calendar drives me crazy. I am so tired of doctors and nurses, though most of them are wonderful people, and have saved my life many times over. I am also tired of pain killers and refused a prescription for the shoulder pain. Stupid of me, I should have taken the presrciption and not filled it until I really feel the need. I guess I'll call and ask about both the medication and the therapy tomorrow.
Good luck with your dr appt. I really hope they find something that can be easily dealt with.
Leena

Hi Leena and Fran,
If your shouler pain is from the neck dissection, get yourself to a PT NOW. Don't wait to feel better unless you are so ill you can't get out of bed. The longer you let the drag on your shoulder affect your arm, the worst it will be.

For starters, the initial treatments will be like going for a massage. They wrap you in all these marvelous moist heated pads which feel so great you'll want to reset the timer. They then massage various areas on your back and shoulders, maybe neck and face also, especially if you are having lymph fluid build up. They will give you exercises to help you strengthen your muscles and get the shoulder back in proper position. The heat treatment alone is worth it. It greatly reduced my pain. Go for it and it's covered by insurance. Just make certain your PT is also the best massage therapist in town.

Take care,
Eileen

Fran,

I learned the meaning of "no pain, no gain" when my neck and shoulders started to hurt post surgery. At least I knew the reason, as the spinal accessory nerve was snipped during rad neck dissection. After a very painful month (or 6 weeks) of physical therapy, I felt much better. Still do. I hope you find such a "simple" solution and start to feel much better soon.

Ken

Hi all at least none of us had to live through the tsunami. I to have neck pain due to nerve endings. My best to everyone.
Cathy

Hi, all. My husband has had a lot of issues with the neck, shoulder pain (radical neck dissection plus other issues). Went through the ringer but finally pain management doctors were able to address it to a degree and gave him some real relief. WEakness from the rad. neck. dis. is still an issue and the PT gave exercises that do help. Remember that nerve endings get damaged, muscles atrophy, everything works against you sometimes and you have to address each item as it comes up. Fran, if you haven't already, I also encourage you to get straight to a PT and possibly Pain Management doctor. My husband despises the pain meds even though they are necessary at times, so is like you in wanting other options. If you went thru the rad. neck, you know that things ar enow missing and other things are compensating for them. One doctor put it as formerly having a leather strap holding up your 10 pound head and now having 2 strings -- you have to teach remaining muscles and tendons to compensate correctly. I wish you luck and please, please keep looking til you find the answer.

Many thanks for all the input. The MRI was done this morning and I have an appt with an very good physio tomorrow morning.
The toughness and persistance of the OC tribe is absolutely inspiring.
Ten days after first posting, I do think there is some positive effect from the Neurontin, although I still take it in conjunction with analgesics. Never have seen the gold medal that is given to the person who can put up with the most pain and don't intend to go in training!
Blessings to all,
Fran

Hi Fran, Neurotin is great but so are the pain meds. I also have a good neck pillow that I love. The maker is Brookstone and it's called Fom. It helps keep the neck warm at night and during the
day. I wish you lots of luck with your problem. I call mine the Pain in the Neck when I get mad at
it. Best wishes Cathy

Hi Cathy; It sounds like you have had a long relationship with your "Pain in the Neck". You obviously have not let it have the upper hand. Again I say the OC survivors are the toughest I've ever met!
Is your ongoing discomfort a post-rad problem or is it from surgery?
I saw the physio yesterday who gave me three different stretching exercises to do after I had warmed up my neck with a "magic bag" (it's actually a bag of oats.) Today, I am in terrific discomfort..not handled by analgesics. It may be from over exercise?? Anyway, I will proceed with caution until I see the Head&Neck team at the cancer center on the 25th.
You can guess that I'm mad at my PiN now.
Thanks for the pillow tip..I'll check it out at the Home Health store.
Cheers, Fran

Yes, Fran its from both the rad and surgery, have had it for 14 years. I also have Raynauds so sleep with two heating pads. Life is so much fun
but at least we are alive. Hope to hear more from you? Rest up the neck.
Cathy

Fran you can get the pillow at Amazon.com too.

Thanks for the heads-up re: Amazon.com Cathy.
If I can shop for anything online that's always my first choice...especially now we are officially in the winter deep freeze: about 25 below zero this a.m. and a bit colder if you count the wind-chill (which we Canucks always do- makes us seem tougher;0)
The SCM muscle which runs from behind the ear to the front of the neck has a very definite lump or thickening at the top which gets very sore when I exercise. I think I'll get the oncologists blessing before I go at the exercises too vigorously.
I am sorry at the moment, that I don't live closer to a nice warm place like Arkansas, Fran

Hey Fran, We have been in the 20's here in Arkansas. I was up in Northern Canada a few years ago. I really liked it and got to see the northern lights. Hope you feel better soon?
Cathy

Hi Fran, How are you doing tonight?
Cathy

Sorry for the late reply Cathy, my husband took me on a short trip into the even wilder north of Northern Ontario yesterday.
Six hours in the car left me with almost unbearable neck pain...it was an interesting experiment to say the least.
Tomorrow I am off to the H&N Clinic, getting the results of the MRI and a little conference with the Docs who have such impact on my quality of life.
Because of our universal health care system, we don't have quite the choice/empowerment that you folks south of the border do. That being said, I do think we have some excellent medical minds available, and if I am very frustrated, I can always ask for a referral to the cancer center in Toronto, 5 hours away.
Thanks for your replies and concern..I do pray for patience with the hope being that "this too shall pass."
You are a great encourager. Blessings, Fran

Hi Fran, you seem to be having a similar problem as I have. Namely that too little stretching causes problems and too much stretching also causes problems (sometimes worse) In my case if I try to massage the area, that too will make it almost unbearable. For me it is better to very gently stretch quite frequently during the day. Invest in a good pillow or none at all at night. I usually know as soon as I wake up whether my neck is going to be a pain or not. It is very much agravated by stress and seems to run in 3week intervals 3 weeks good and 1 week bad (I am sure that is going to sound crazy) I have Diazepam for the really bad days. That together with regular asprin works most of the time. Sometimes it is so bad it turns into a headache that lasts for days.

From another cold part of the world just down hill from you.

Fran, I just looked at the map and found that Sudbury is actually a little bit south of here. So you are actually "across the hill" from here.

Hi Mark; Absolutely nothing sounds crazy to me anymore! I have let the Doc know that I am a "worrier" and he has me take 1mg of Lorazepam at night (same family as the diazepam)but I don't think it has the inherent muscle relaxant features of diazepam.
Thanks for the info on the gentle stretches, I'll give them a try. I think the ones I was doing were a little vigorous.
There are so many changes in our lives/bodies with OC, I am ashamed that as a nurse, I really had no knowledge or appreciation before of the challenges we OC's face. That is on top of the worry about recurrence. My Doc said 50/50 that I would make it for two years...I'm almost halfway there AND I've read the positive stories from so many of you multiple year survivors. I can't help but feel the courage racing back into my heart.
It's all forward motion up here...stand still for two minutes and you're frozen to the spot!
Cheers,
Fran

Hi Folks; Well the guessing is over on the neck pain. I flunked my MRI and the docs report a diffuse, poorly defined tumor which has infiltrated the SCM muscle in my neck. Because of its lack of margins the tumor is considered dangerous and the outlook is (quote) "not good".
At this point I have to arm myself with a bunch of knowledge for a radical neck dissection which will happen quite soon and all the fun stuff that goes with that.
I think I'll start up a new thread more specific to neck surgery tips and problems.
P.S. the neck is still sore but the Doc put me on an analgesic called Toradol...it looks like I have traded in that constipation for some good old lack of concentration after all.
Blessings, Fran

Fran,

I am really sorry to hear your news. I have not had any surgery but I want you to know I will be praying for His wisdom and guidance to your medical team to find the best possible treatment plan to rid you of this horrible disease.

Blessings to you,

Ed

Thanks Ed; There are a number of "Prayer Warriors" who have been an integral part of my treatment since the get-go. I am so pleased to add another.
With thanks for the blessings sent, and received,
Fran

Hello Fran,

Sorry to hear the bad news. As you start your treatment please know you can ask anything you can think of. Someone with similer problems will answer. You have found the best source of info on Head & Neck Cancer on the web.
Many members have had the same treatment you will be receiving and are around to tell us about it. Remember the numbers mean nothing to you. Each case is similier yet different. You can beat this.

Best Wishes, Danny Boy

Fran, sorry to hear of your news. I posted in your new thread before I read this. Will pray for you to overcome this nasty disease.

Fran
Positive vibes and prayers from across the pond, I'm sure that you can do this...
Sunshine...love and hugs
Helen

Hi Fran, So sorry about your news. I'll pray as well for you? Hope you get over this real fast.
Take care, Cathy