Previous Thread
Next Thread
Print Thread
Joined: Feb 2004
Posts: 598
JeffL Offline OP
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Feb 2004
Posts: 598
Greetings everybody. Just wanted to share some ongoing issues as I approach my 2 year anniversary from diagnosis in about 3 weeks.

My shoulders have been a disaster in terms of stiffness, with pain radiating down into the center of the shoulder blades. I am removing wallpaper in our master bathroom, which has 12 foot vaulted ceiling, and am learning just how little I can do with my arms over my head. Also notice marked weakness and some pain in triceps. Tops of shoulders from neck to joint are very tender.

At the same time, my neck has been in a constant state of tightness, with tenderness along the entire course of the SCM and posterior. All of this is bilateral, with no untoward bumps, lumps or other issues.

Dry mouth is as bad as it has ever been. I have had a little upper respiratory thing that wife and I have passed back and forth for a couple of weeks, and I am almost over. I know it is winter and such, but wow.

I am on the computer a lot every day for work, and at home, so that probably doesn't help shoulders.

Anybody got any ideas here? For those who have used massage -- where did you find qualified person, and how often do you do it? Any ideas for the neck fibrosis?

Just had last follow up with ENT/Surgeon 3 weeks ago, and have next one with RO 2 weeks from tomorrow, so am not concerned on that end. Just trying to find out how others handle the gift that keeps on giving.



Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Sep 2008
Posts: 489
Jeff

Following my first surgery which included the bilateral neck dissection, I had what is called Frozen Shoulder (very technical). One of the things that they had me do when doing the exercises was to keep my thumbs pointed up to make sure that I was exercising the proper muscles. The muscles on the top of your shoulders and the ones going down around your shoulder blades were the ones that they wanted to isolate. Sorry that I did not take anatomy. I now use the colored rubber bands and light hand weights also to do stretching/strength building exercises almost every day. When I miss a day or two I can really feel a difference.

This time around I asked my ENT to refer me for therapy that will stretch the muscles and include massage. I start next week. I wonder if you could call the radiation treatment center and ask for some referrals of massage therapists that are familiar with radiation patients and the effects.

I hope that this helps.


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Jeff, maybe you better save those shoulder muscles for golf. LOL J/K . I have some equipment that my muscle bound son gave me to use and it worked very good on loosing me up. He'll be at the Arnold Classic in Columbus for the weekend. I can give you his cell no. if you like and i'm sure he'll give you some advice. The Arnold Classic is where he set the State bench press record a few years ago. I don't know if he still has the record or not. I used what he gave me and the lawn mower and hand dug a garden. I'm to hardheaded to ever give up trying.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Dec 2008
Posts: 20
Member
Offline
Member

Joined: Dec 2008
Posts: 20
I didn't have surgery like you guys, but I had a very stiff and tender neck at RT sight where the skin was so burned, all the way up to the TMJ. I saw a pain management specialist who did accupuncture and referred me to PT for accupressure, ultrasound treatments, massage, and exercise with the bands and small weights. The moist heat after therapy helped ALOT. About 6 weeks worth and I can finally turn my head to the left and right. Two creams she used that do not stink and do not burn the skin : Arnica cream and Traumeel. They are very soothing. I got them at the Nutrition store. I was not a believer in the natural stuff at first, but I am now that I tried it. Kat


59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5