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.

Wow - I just had my surgery last month (4/11) and I started having shoulder problems almost immediately. I do try exercising my right arm as I was told to do by my surgeon - basically take a 2lb weight and bring it up horizontally and hold - I am at about 25% - can't raise my arm up all the way. Typically around mid-afternoon, I am having bouts of serious, acute shoulder pain. So much so that the Lortab my surgeon prescribed to me for my tongue (I presume) pain post-op (which I don't have - just a slight burning sensation), I am using when my shoulder pain gets so bad that I'm on the verge of tears - and I usually have a very high pain threshold. With what I'm reading here - folks with this pain years after surgery - I am going to ask my surgeon to prescribe physical therapy NOW before this gets any worse... He did tell me that I must exercise it in order to avoid "shoulder freeze."

Hi,
I responded to you about this in your other post. You are correct: ask for a physical therapist who sees head & neck patients.
Anne

Thanks, Anne! I intend to - there is no way that I can just suck it up and live with this kind of pain for years. When this pain hits me, it literally brings tears to my eyes. It's awful and I intend to do something about it - I'm nothing if not persistent (I'm a taurus)... My mother always says the squeaky wheel gets the grease... Squeak, squeak...

Pepper

If you read the first page of this thread, you saw my post about the damage a neck dissection causes. although your other posts have mentioned that you are asking for a PT referal, I just want to emphasize how important a competent physical therapist is to aid your recovery as well as reduce the pain. It' been almost a month since your surgery, you should hve been in PT by now. Lifting that 2 lb weight is all very good, but hardly enough nor does it work the other muscles. I had about 20 different exercises to do over the course of a month that really helped.
I winced when I read that you had 29 lymph nodes taken out and not one of them had cancer. I'm a bit of a curmudgeon here at OCF about neck dissections since all too many doctors consider it a routine precaution instead of surgery with major quality of life complications. It's just like the old days of breast cancer when they did more surgery than needed for "safety".
After my doctor explained all the "normal" complications of a neck dissection, I refused a proposed neck dissection my first time around even though one lymph node did have cancer. when the cancer came back, my surgery required all the same neck slits and muscle trauma that a neck dissection would cause anyway, so I agreed to it plus the risk that the cancer was left over was too great to take for a third time. The pathology report showed that my neck dissection had been unnecessary overkill even in my textbook situation of needing a ND. The one lymph node that had had cancer was totally necrotic or dead and no cancer cells showed up in it or any of the other nodes taken out on levels II, III & IV.
Since you have mentioned your immune system in other posts, you already know how important and vital those 29 lymph nodes were to your immune system.
Keep squeaking: plus I found that starting back in Yoga and Pilates classes really helped my range of motion and the pain.
It does get better but now is the most important time to break up those muscle adhesions and strengthen the muscles that will otherwise atrophy after a ND.
Oh, last and not least, I still do those PT exercises three years later as maintenance in addition to my regular workouts.
You are young and you can overcome this but you do need PT asap.
Keep the Faith
Charm

Has anyone mentioned or have you been to see a lymphedema specialist? I was just talking about this with my speech therapist when talking about neck/shoulder excercises.

Pepper - I meant to ask you about this as well after we spoke and you mentioned neck/shoulder pain as well.

MissB

Just to reiterate what Charm has said, you really need to start seeing a Physical Therapist. These issues are very common after a neck dissection and many of us have experienced this side effect.

Where physical exercise feels like the last thing you wish to do after this experience, let me assure you that it's one of the best things for you. Exercise is shown to be as effective as antidepressivants for treating depression. Due to brain chemistry the body feels more pain when in a depressed state (also very common after the cancer experience) so the physical exercise will also help with pain management.

Keep your head up, get into a physical therapist and keep plugging into these boards for advice and support

Eric

Well, I bitched so much about how much my shoulder hurts that my doc's nurse assistant finally agreed to schedule me for PT. As for exercise, my doc actually told me no strenuous exercise until he clears me - the only thing he allowed me to do is lift 2lb weights until I go for my follow up (which is this Wednesday). He said something about the potential for tearing internal stitches. He also doesn't want me doing anything that will overly stretch my neck in any direction because he doesn't want me stretching out the healing incision - he says that would elongate the scar.

Even when I try jogging with my dogs, it sometimes hurts my neck so until I get into physical therapy, I don't want to do myself more harm than good...

I'm also almost out of Lortab, though when I asked if they would call in a refill for me, the nurse assistant told me to just take 4 Ibuprofen (800mg) pills at a time instead. Well I already do that during the day just to manage the moderate pain so it's not making a dent on my acute pain in the evenings. So now I'm wondering what the highest dosage of Ibuprofen is that I can safely take... I know a lot of doctors are concerned with patients becoming addicted to pain medication but I think that if I was addicted, I would probably be taking the stuff all day long instead of saving it and using it ONLY when the pain is horribly unbearable. Still, I'm not sure how you explain this to the nurse without sounding like some sort of desperate junkie.

As for the lymphedema specialist - no, I haven't seen one or been referred to one. I'm not quite sure what that even is but I can probably infer by breaking down the word.

I will certainly ask about that when I see my doc on Wednesday...

Thanks for all the advice, everyone!!

A lymphadema specialist is someone who does a special kind of lymphatic massage to help move the lymph fluid build up. They removed nodes the fluid doesn't drain well now. The massage helps move the fluid and build new pathways.

Hey Pepper

[quote]I know a lot of doctors are concerned with patients becoming addicted to pain medication but I think that if I was addicted, I would probably be taking the stuff all day long instead of saving it and using it ONLY when the pain is horribly unbearable. Still, I'm not sure how you explain this to the nurse without sounding like some sort of desperate junkie.[/quote]

Talk to the doctor personally and just say what you said above. Insist he act professionally and treat the pain.
Hopefully he is not just drinking the DEA Kool Aid and understands that cancer pain medication is essential to healing. Good luck
Charm

Pepper,
you're on the highed ibuprophen dose. If your doc doesn't want you on narcotics (your doc, not your nurse), here are some things to ask the doctor:

Switch to different NSAID - individual results very, naproxin might work better for you - it's a crapshoot what works best for any individual.

Is it ok to add tylenol to the mix - offset by 2 hours. Ask about this don't just do on your own.

You can keep a journal today and list time of day and level of pain every hours; note also when you take the ibuprophen. That should help your doctor help you manage your pain.

Re: the nurse. Organize your questions so that you sound as professional as possible. As long as she answers professionally, you shouldn't give a tinker's d--- what she thinks of you personally.
good luck!

I would think when you see your doctor--is it this Wednesday--he will surely take care of this! I am shocked really that the nurse or PA is not concerned about your pain and lack of mobility. I would think a PT appointment would be suggested by them to anyone with shoulder issues such as you describe.

A physical therapist, a speech therapist, an occupational therapist--any of these can be a certified lymphedema specialist. They also have to do extra training to know about head and neck. I found this out when I did the research to find someone near me. I think that the lymphedema massage is one of the more beneficial things I learned to do. It was well worth the trouble it took for me to find someone. And it was no problem to get my doctor to prescribe it for me.

Hope you get some help this week. Some nurses are gatekeepers and seem to think the patient is exaggerating; thankfully most are not that way.
Anne

[quote=Kycabledog]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!!!!! [/quote]

What you are experiencing is common after treatment as well as documnented late efffects of radiation. Not sure what type of radiation you had but you must be diligent on neck excercises as well as general flexibility and aerobic excercise. First, check on the Livestrong website for Livestrong at the Y, a program free for cancer survivors and provides trainers specially trained to deal with post treatment issues in a group setting. Some people respond well to radiation and others don't. A number thrown out to me by a Neurologist that specializes in motor neuron diseases is that less than 1/2 of 1% of the head and neck cancer patients develop serious lifelong issues but even those are delayed with proper. Find a chiropractor that understands the scalene muscles of the neck and uses ART release techniques. It is much like accupressure versus bonecracking. You will benefit from one treatment but will require visits for pain relief any time it bothers you. Not all chirpractors use bone and joint adjustments; some only use the muscles to bring the spine and core back to neutral.

Also, for any men out there Reel Recovery is a great program to learn fly fishing while having a great time and it is also free. In a 3 day period we had some group sessions of about an hour or so maybe 5 times.

Stay on top of the neck and shoulder pain. It is very common especially if your traps, rhomboids and lats were toned or bulked up. As EricS stated, provide some more info as far as staging, primary tumor site, treatment, etc. and some better info can be directed towards you. Also, avoid deep tissue massage in the area with pain. Lighter, passive stretching in this area will gain more relief and someone doing deep tissue without understanding the damage from radiation could cause you more harm. Also, keep that non-HDL cholesterol below 100 because plaque issues in the carotid arteries of post radiation patients is much more serious than a non-radiated patient. Good luck and stay on top. It's the long-term pain that beats the body worse than anything, in my opinion. It causes your body to try and adjust to the pain by compensating using other muscles and neutral posture will reduce upper back, shoulder and neck pain as good as anything.

Ed