I have been out of Radiation Therapy since May 25th, 2011 and have progressed really well since then. I can feel my saliva coming back, can eat most everything except spicy, but my problem seems to be pain just above the right shoulder blade and it seems to be getting worse over the last few weeks.

Trying to lift anything with the right arm and working extending my arm above my head and even driving is causing severe pain. Any clue as to what is going on? I have consulted both the radionocoligist and the surgeon, but they have no clue except that the radiologist did push on the area on the last visit and I almost passed out with pain.

He seems to think it is scar damage is from surgery and is more muscle and skeletal related then damage from the radiation, but I never had anything this bad until the radiation. Had an MRI done and I am scheduled for a Catscan with contrast in March, but don't think I can handle the pain much longer.

Any suggestions would be appreciated!!!!!

I have some ideas but without a more information I may be way off. If you notice my signature, it tells you my staging and a brief overview of the procedures and treatments I've had so that when I ask for advice, other posters have most of the basic information to start with.

My questions would be. If you've spoke to a surgeon then I'll assume that you had surgery. If one of the procedures was a neck dissection, nerve damage and issues with your neck and shoulders are common and can be helped with PT and drugs like Gabapentin (Neurontin) that help with neuropathy, vaporized marijuana also helps some (me) with neuropathy (nerve pain) as well.

So start by filling us in on the staging of your cancer, nodal involvement if any and the basic procedures you've had and we'll be able to comment more intelligently and help point you in the right direction!

Oh, and welcome to OCF!

Eric

Hi, and welcome to OCF.

I'm glad to hear that you've progressed well thus far, but sorry to hear of your pain/dysfunction lately.

I am a physical therapist and it sounds to me like the pain you are experiencing is coming from your neck. Neck issues very commonly refer pain to the upper trapezius (muscle that goes from your neck to your shoulder) and to the middle of the shoulder blades. It can also refer down your arm, in worst cases all the way to your fingers; and also the back or your head up and over to the temples/forehead. Are you having an MRI of the neck? It's HIGHLY unlikely that it is actually your shoulder.

The good news is skilled physical therapist can help you. I would advise you to find one who is certified in The McKenzie Method. It is an evidenced-based treatment technique that is designed for patients to eventually do themselves at home. You can locate a certified practitioner through this link http://www.mckenziemdt.org/index_us.cfm.

The bad news is that you've had radiation and perhaps a neck dissection and your anatomy will never be the same. You will have permanent soft tissue changes and these will affect your joint mobility, among other things. But, there is more good news...you will most likely be able to manage your pain/symptoms with a comprehensive approach (PT, meds, massage therapy, etc). A word of caution, and I may receive some flack for this...steer clear of chiropractic spinal manipulation of the neck. It can be dangerous for people with "normal" anatomy. You have very delicate arteries that run through the bones of the cervical spine and feed the base of your brain with blood. These vessels can and have been injured/severed as a result of manipulation in some cases which can lead to death, stroke, or permanent brain damage. Since you've had radiation, your blood vessels are already at a higher risk for damage/rupture...you get my drift, I'm sure.

I hope that you get treatment ASAP and you begin to feel better soon. Best of luck and please don't hesitate to contact me if you need help.

Take care,
Kerri

well i can honestly say I feel your pain. I am 2.5 years pos treatment (yeah) and generally doing wel. I have had alot of pain the lasat 6 months, both from scar tissue and neuropathy.
Like Eric, i do take neurontin, works amazingly well for neuropthy. Neck pain is different. I need to streach my neck several times a day and still take some pain meds every few days when it realy gets out of whack, mostly I take Tylenol 4.
I also use one of those stick rollers that athletes use on sore mucsels. Works pretty good

It does stink, but it is something I can quite easily mannage

Good luck,
Steve

Kerri,

You have a masters degree in physical therapy, you're advice and insights are welcomed. Even if someone disagrees with your opinion on chiropractic care, they should at least take your advice into consideration. I for one appreciate your posts.


Eric

KYcabledog

You mention surgery. At the hospital where they did my neck dissection they scared the heck out of me by making me sign papers listing all these potential complications

[quote]Weakness of the trapezius muscle is expected after radical neck dissection when the spinal accessory nerve is transected but can also occur even when the nerve is preserved. When the nerve is preserved, recovery is expected within a few months of surgery. Whether this nerve is preserved or sacrificed at surgery, post-operative physical therapy can prevent long-term neck and shoulder discomfort.

A small branch of the facial nerve is encountered just below the jaw line at the top of the neck. This is mobilized and preserved when performing a neck dissection. Occasionally a temporary weakness of the lower lip results from this mobilization. Full recovery can be expected.

Numbness of the neck skin is expected after neck dissection and improves over a 6-12 month period after surgery. This occurs because the nerves that provide sensation to the neck skin are transected and need to re-establish connections to the skin. In some cases, the regenerating nerves become trapped in scar tissue and can form a small nodule that is sensitive to the touch. This is a late complication of neck dissection occurring several months to a year after surgery.
As a result, it is common following radical neck dissection for people to have stooped shoulders, limited ability to lift one or both arms, and limited head and neck rotation and flexion due to the removal of nerves and muscles. [/quote]
My surgeon was adamant that I needed to start Physical Therapy after my modified neck dissection even though she was very careful to work around my sternocleidomastoid muscle (often damaged in neck dissections)
A good physical therapist made all the difference in my recovery. God bless them all
Charm

Sorry about not being more specific..the things some of you write at the end is hard to figure out. I am 54 Yrs old,DX Stage 2 BOT SCC insitu with RND on left side in 2007. In January 2011 found more scc lining of throat. IMRT for 6 weeks ended in June 2011. Pain is in Right trapezius muscle just above the shoulder blade. Hope that helps with the diagnosis. I have been lucky and have had just SCC Insitu in both cases.
I just went and visited the Surgeon this week and he now has me scheduled for an MRI of the neck and upper spine and Physical will start on Tuesday morning.
Doc did prescribe some Carisoprodol to help relax the muscles along with 7.5/500 Hydrocodone. I guess I will know more next week.

Thanks for all the advice!!

Sorry....Physical Therapy starts Tuesday

This is my first post, hope I am not intruding. I live in France and had all my treatment here so I wasn't sure I could find appropriate resources through the net. I was surprised to find that so many people are having the same issues of neck and shoulder pain that I still have three years after my surgery and radiation therapy for stage 2 squamous cell carcinoma of the base of the tongue. I had a graft from my thigh to rebuild the tongue to facilitate eating and speech. I have done very well but the neck and shoulder pain has not improved after several sessions of physiotherapy. I have been taking acetominophen/codeine but it's not totally effective and I am rather wary after reading negative things about long term acetominophen use. I also use heat and stretching exercises which give temporary relief.

I am scheduled to meet with doctors at the pain center at the cancer hospital in Nice where I have been treated and I would like to have suggestions of treatments or medications that work for other people.

I have tried to be patient but after three years I am a bit discouraged. Thank you for your suggestions.

My husband also has neck and shoulder pain. He was evaluated by a non-surgical orthopedist and is now in PT. It is believed that his trapezius nerve was damaged in one of his surgeries. As a result in addition to the pain, his right shoulder is lower than his left and the muscle tone is different. He still plays golf, but he doesn't like the way he looks, kind of sloped on the side.

The therapy makes him feel better but will not cure the problem. One of the indignities following aggressive treatment for OC. The therapist did say to be careful when I massage his neck, as too much pressure can damage the blood vessels.

I do gently rub his neck and shoulder almost every day. It is a temporary feel good measure but I am happy to do what I can for him.

You are not alone on this complaint. I think PT is good on so many levels. My husband gets out, is warmly welcomed by the PT staff, and he does get some relief, albeit temporary. Hang in there. Maybe you can find a PT in your area who can help you move better and get some pain relief, too.