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#37996 01-16-2005 08:58 AM
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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


scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
#37997 01-17-2005 10:31 AM
Joined: May 2002
Posts: 2,152
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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


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#37998 01-17-2005 01:15 PM
Joined: Jan 2005
Posts: 94
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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


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
#37999 01-17-2005 01:38 PM
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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


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
#38000 01-18-2005 04:12 AM
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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.

#38001 01-18-2005 10:03 AM
Joined: Jan 2005
Posts: 108
Fran B. Offline OP
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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


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#38002 01-18-2005 02:01 PM
Joined: Jun 2002
Posts: 206
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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


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
#38003 01-20-2005 08:45 AM
Joined: Jan 2005
Posts: 108
Fran B. Offline OP
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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


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#38004 01-20-2005 01:39 PM
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Posts: 206
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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


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
#38005 01-20-2005 01:41 PM
Joined: Jun 2002
Posts: 206
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Fran you can get the pillow at Amazon.com too.


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
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