Hi like everybody on this site we have a common problem and its great to be able to communicate and help each other. I am extremely lucky , clear and 6 year post surgery, radiation and chemotherapy. I have met and talked with so many people directly and on this forum that have been of immense help. If it is of help I can tell you that 6 years later --I have relatively good returned saliva flow (some difficulties at night with sleeping),-- although numb after accessory nerve damage I have good power in my arm and shoulder and can now lift my arm over my head--can eat almost any food and speak normally with the assistance of some fluids, have a good quality of life .
I am extremely thankful for where I am at and feel a little selfish in making any complaint. As we all know sometimes it is very difficult to get information on details after the major trauma of successful surgery and treatment. I have a request/question to ask. As mentioned I had accessory nerve damage and removal of the sternocleidomastoid muscle on one side of the neck. Over the last year both the neck area and shoulder have developed continuous pain/throb, become very tight and results in almost permanent headaches. MRI's have shown nothing sinister. Has anybody else experienced this problem

I'm not nearly that far out so I can't say we share the same problem- but have youn hough of trying massage? It would help promote blood flow to the area and relax the muscles there. Good luck

Thanks Cheryl. Doing exactly that and I do get great relief. I would need to have massage everyday is the only problem. I hope you are doing well and the Chemo and Rad went well for you. I wish you well

Perhaps invest in a good massage chair... Ive sat in some that do a great job on the neck area - it would save you money in the long run... Heat might help as well makes muscles relax - increases blood flow.

Hbo? I've never had it but that also promotes blood flow and healing - many here say it's amazing.

I'm okay - slowly crawling out of my radiation hole. hope to be you some day! Take care and feel well.

John --

I understand what you are going through. I did not lose the SCM, but had radiation, chemo and bilateral ND Levels I through V 4 years ago. My shoulders and neck have become increasingly painful over the last couple of years. I can do things requiring movement (i.e. I can still play golf at the old level), but fairly often the aching shoulder and neck wake me up at night. My docs say just a combination of some SAN damage during the ND and radiation fibrosis. Exercise can help, but for now, it's Alleve and some stretching.

John

Have you seen an experienced physical therapist about this? I was grateful that my surgeon was so gung ho on me doing PT after my ND, and while I did not have my SCM cut, there was trauma and loss of motion with throbbing pain.
It sounds a lot like muscle adhesions which either some variation of professional myofacial release may help ( massage is a very very mild form of myofacial release). Many chiropractors offer this (just say NO to the subflexion, neck cracking etc and ask for adhesion and myofacial release).
While insurance does not cover massages, it does cover PT (at least here in the USA, I do not know about Irish medical coverage).
Finally, congratulations on being clear 6 years, that makes you an undisputed Survivor.
Charm

Hi John, Martin is in constant pain with his neck and shoulder and ddoes get weird headaches, like migraines since the treatment. His movement is also quite restricted on that side although it has improved a lot since the treatment. We were referred to an acupuncurist. It works for some people. Although it didn't work for the pain, she did manage to improve the movement 1000 times. She was disappointed as she has managed with the pain of some people. So it's worth a try. We didn't expect anything from it and she managed to loosen martin's neck, even if the pain is still there. But it might work with you.

There is physician in New York City at Sloan-Kettering, Dr. Michael Stubblefield who is a cancer rehabilitation specialist. His special interest is identifying and treating the long-term complications of cancer survivors and seems to be very knowledgeable about what he calls 'radiation fibrosis syndrome' that includes weakness and painful spasms of the muscles of the jaw, neck, back and extremities. More info including some treatment options at http://www.mskcc.org/prg/prg/bios/666.cfm

He was written up in Cure magazine if I remember correctly. It seems like cancer rehabilitation is a relatively new field, now that survivors are surviving long enough to have on-going health issues. Could be there's a comparable specialist in your area.