It has been 45 days since completion of radiation/chemo, and about 4 1/2 months since bilateral modified radical neck dissection (muscle, jugular and spinal accessory nerve all preserved.) It has been just over 3 weeks since I was told I was clinically disease free.

I have been pleased with the amount of activity I can engage in, and am seeing acceptable progress with eating and taste. My issues now involve my neck, shoulders and upper back.

First, my neck feels "tighter" in front than it ever has, and is sometimes tender to the touch. There are no extra bumps or lumps, and it is pretty symmetrical on both sides. Some days it appears slightly more swollen than other days.

Also, the muscles at the back and sides of my neck are extremely tight, causing a pulling sensation into my trapezius muscles left and right, and sometimes extending around into my chest and upper arms. It is a burning type of pain, not unlike what I had before my cervical fusion. The muscles extending from the base of the neck along the top of the shoulder are very tight and sensitive to the touch.

From my reading, I gather both the surgery and radiation can cause these types of symptoms. Anybody else experience this? What was your treatment of choice?

Thanks!!

Congratulations on your diagnoses! I had a total Larygngectomy and I am going throught Rad/Chemo at this time. My neck is definetly tighter than I like but as the Radiation works it seems to make the muscles fiborous,lacking the fluidity of youthful muscles. I have been rubbing my neck often like a message and it helps. I can now turn my head under the faucet and drink water after brushing my teeth. I am sure glad I didn't need a radical neck disection, but I have met a guy who had one years ago and he doesn't have too many complaints. Lucky I guess.

Jeff-
My treatment ended July 1997 for 7.5 years I was in pretty good shape. Now I experience excruiating pain in my shoulders, rotators, back and neck. I get a tingling sensation when your limb is waking up after it has been slept on and is waking up, constantly. I have been to 4 different type of Dr's. for this problem and get no answers! My acupuntarist & massage therapist told me my muscles are like petrified wood. I am currently doing light weight training and stretching excersises and seem to be getting a small amount of relief. I can feel your pain and I am also looking for answers as you are. I have an appt. at the Chicago rehabiliton institue for pain management and hopefully will get more answers.

I had a radical neck dissection on my right side in May 05. It took almost a year for the swelling to go away. The right side of my neck continues to feel "tight". The tenderness has subsided. I do feel itchy in that area (mostly in the morning). I am glad to hear that you are active. I find that activity and excercise help to alleviate the stiff, tight feeling. Keep moving as much as you can. Rainey

Yes, I too have the tightness in my neck and jaw and tingling sensations. The tingling started in fingers and feet (nueropathy from chemo I am told). It now travels around the back of my neck as well. My chemo Oncologist told me the side effects from most meds to treat this is worse than living with the "tingling", as long as it's tolerable.
I agree with Rainey, the more I use those muscles in my jaw and neck, the more mobility I maintain throughout the day. I still do the exercises the speech therapist gave me during rehab back in January/February.
I have had an intense pain and aching in my left shoulder (right side dissection and treatment) My Oncologist told me he thinks it's a rotator cuff and nothing whatsoever to do with treatment. Funny though, I didn't have any of these symptoms until just recently, and I sure haven't been completing any vigorous exercise lately! Other than dry mouth & limited taste, if that's the only other issue I incur I'm great with things!!
Best wishes,
Steve

Hi Steve,
I finished treatments 2 years ago (chemo/rads), no surgery. I have experienced continued issues with neck stiffness and swallowing. The ENT said that the rads tend to stiffen various structures in the neck.
Then, out of nowhere, my right shoulder and upper arm began experiencing incredible pain (such as quickly reaching forward). The radiation oncologist ordered XRAY and MRI and sent me to an orthopedic doc who says that there is a bony growth and that the bursa is compromised. He expects physical therapy to resolve, else he will inject cortisone. Everyone says that this is unrelated to the cancer and treatments (of course, there are the inevitable age related issues - I'm 64).
Though my primary reason for writing is to help alleviate concerns about your shoulder problem being related to the cancer and treatments, the reality is that you should get an MRI and see an orthopedic doc, preferably one that won't jump immediately to surgery.
Harry

Physical therapy (from a therapist experienced with radiation issues) really helped my husband with the neck and shoulder stiffness. He saw a therapist for about a year after treatment. She also gave him exercises to do at home.

Anita

Jeff,
I lost my SCM muscle in surgery and physical therapy has been of enormous help to me. I have to follow up with stretching exercises, though, or else pay the price.

I don't know if this will help but I put Aveeno lotion on my neck every morning after I finish shaving. This seems to keep everything limber and the aches down. I just massage it in until it is rubbed in. Try it and let me know.

I am experiencing shoulder pain with twitching of the nerves and muscle. It has been 3 years and my shoulder and neck is still tender. I went to P/T for 6 weeks for the shoulder pain and she finally concluded I had nerve damage. The radiation oncologist says it's impossible but my ENT says absolutely. I have been to the primary physician, orthopaedic, and neurologist and none of them have been able to help me. So I will stick with the P/T and ENT's conclusion. I assume there is nothing to do about it. If anyone has any advice I sure would be willing to listen.

It seems each of us has our own cross to bear with the side effects and pain. Mine is so intense some days I just want to cry it debilitates me totally. I also developed a torn rotator cuff and it send out unbelievable pain shocks. Some days it feel like a knife is in my shoulder. Other days it is better. I too have been to doc after doc and never got a straight answer from any of the. The nurologist told me I should be thankful to be alive and to have a wonderful day. I am exercising and it helps a litle but it is not the only answer because I am very much uncomfortable most of the time.

Jeff,

I had 2 neck dissections in late 03 and early 04 plus 36 radiation treatments. I also developed cellulitis in the neck area about a month after radiation.

My neck area seems to tighten up late in the afternoon accompanied by a general tightening in the mouth area where I had a near total glossectomy. I take a half teaspoon of a pain medication prescribed by my ENT which helps a LOT.

In the evening I massage each side of my neck with cocoa butter and use a therabite (also called a bitewing) to stretch my mouth. This is a device you put between your teeth. I do about 5 times for 2 minutes each. Really seems to help.

Jim
SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty, neck dissections;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Hi all, I still have physical therapy, I have found the pool really helps, it is about 84 - 86 degrees and my PT has me doing all types of neck exercises while in it and they seem easier to do in the water. Carol