Shoulder Pain and Dysfunction After Radiation

Remembering that I have had radiation twice, most will not run into this problem. But some will, and as I've not seen a reference to it before, thought I'd talk about this situaton. It has taken me awhile to figure out I had a problem.
Beginning soon after my last radiation, I started having mild bilateral shoulder pain. I had deconditioned a lot during treatment, and I assumed it would get better with time. I started an exercise program, including jogging and wieghtlifting immediately upon completion of radiation, and my stamina got rapidly better. But not my shoulder pain. I I noticed that, although I made progress on the weights, I have only regained about 70% of my previous capabilities. My pain is pretty non-specific. Central to both shoulders, not in a spot which suggests a trigger point, therefore not in my mind suggestive of a specific diagnosis.
Six months ago my Tai Chi instructor told me I had bad posture, and that I needed to work on it. I thought "what?" I've never had bad posture before. None of this has been at a level I've even mentioned it to my ENT oncologist. Anyway, yesterday I got to palpating my posterios shoulder, at least to the best of my ability. And I found that I have signifcant loss of the mid portion and upper portion of both trapezius muscles. This led to a websearch for shoulder problems related to radiation.
It didn't take long for a websearch to discover the situation. So I'm posting the definitive article on the topic of radiation fibrosis and its effect on shoulder musculature. I'm going to immediatly modify my exercises to include strengthening of the affected muscles (trapezius exercises are straightforward, but heretofore not included in my program). I will resume my stretching exercises for the areas of difficulty, and have recruited help from my family on maintaining currect posture. I will also arrange to see the radiation oncologist for additional discussion.
The posture component of this is pretty subtle. My posterior muscles have weakened, but the anterior muscles (like pectoralis) have not weakened. So a stooped shape now feels normal. Pretty sneaky. Anyway, here's the reference:
http://now.aapmr.org/PMRJournals/201111_1041_RadiationFibrosisSyndromeNeuronmuscular.pdf
Hoping this is of some use to others.
Pat
Comments
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Thank you
You google well! I looked at the article quickly, will need to download on paper, I'm old fashioned! Yesterday my husband asked how my back was, he noticed that one shoulder is lower than the other as I walked up to a counter. My neck problems I have associated with dissection but haven't been able to figure out my cheek and chin. I think that this article has to do with me also. Maybe Skiffin could put this into the Superthread.
Thank you for your continued support on this site, I appreciate your input.
Bev
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Hi BevKTeacher said:Thank you
You google well! I looked at the article quickly, will need to download on paper, I'm old fashioned! Yesterday my husband asked how my back was, he noticed that one shoulder is lower than the other as I walked up to a counter. My neck problems I have associated with dissection but haven't been able to figure out my cheek and chin. I think that this article has to do with me also. Maybe Skiffin could put this into the Superthread.
Thank you for your continued support on this site, I appreciate your input.
Bev
If you google around this topic, like "fibrosis" + "trapezius" + "therapy" and other permutations of the key words, you will find that Sloan Kettering seems to have the most input into the literature. They have some stuff on treatment of shoulder drop after spinal accessory nerve damage from radical neck disection that involves physical therapy and electrical stimulation, seemingly with pretty good results. I had thought this situation to be permanent, but maybe not so.
Pat
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Thank youlongtermsurvivor said:Hi Bev
If you google around this topic, like "fibrosis" + "trapezius" + "therapy" and other permutations of the key words, you will find that Sloan Kettering seems to have the most input into the literature. They have some stuff on treatment of shoulder drop after spinal accessory nerve damage from radical neck disection that involves physical therapy and electrical stimulation, seemingly with pretty good results. I had thought this situation to be permanent, but maybe not so.
Pat
again. I wasn't sure what words to type in, will try. I find that I need to go to appointments educated. My doctor at Stanford is the only one that seems to get things done. I will be looking for a new rad, or mabe not, my doctor has moved on (I don't blame him in this town!).
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Good info
Thanks for posting Pat.
I have shoulder issues due to my surgery but the rads had to do more damage from what I just read and I won't really know for some time what the long term effects will be. Just started getting a funky electric shock feeling on the left side that goes from my neck down into my shoulder blade area when I move my head a certain way...
Rads really do keep on giving don't they?Positive thoughts and prayers...
"T"
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Hello Pat !
Great information as always. I'm back into a form of yoga for my breathing and mind and body issues. You have been an inspiration to me for the past few months....as there have been days I just want to crawl into a hole and say I quit. Thanks again Pat ! Hugs sent ! Katie
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Questions
Howdy Long term survivor, I do not post a lot however, I have a few questions. When you started jogging after rad tx how did that go? What are some tips for dealing with no saliva when running? How long did it take to get your stanima back? I am only 32 days out of rad treatment and 3 months from neck disection and robotic surgery. I know i have a ways to go and it is still early. I am frustrated though. I am thakful for what I have and happy to be alive. I can walk about 1.8 miles. I guess I'll never be a as good as I once was but I'd like to be close. I live in a hot and humid climate and it is summer. Any tips would be helpful.
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Howdy CowboyET@cowboy said:Questions
Howdy Long term survivor, I do not post a lot however, I have a few questions. When you started jogging after rad tx how did that go? What are some tips for dealing with no saliva when running? How long did it take to get your stanima back? I am only 32 days out of rad treatment and 3 months from neck disection and robotic surgery. I know i have a ways to go and it is still early. I am frustrated though. I am thakful for what I have and happy to be alive. I can walk about 1.8 miles. I guess I'll never be a as good as I once was but I'd like to be close. I live in a hot and humid climate and it is summer. Any tips would be helpful.
I've learned a few tricks, having had to rehabilitate several times now. Let me PM you.
Pat
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Hello everyone. I'm wondering if anyone has a copy of the PDF that longtermsurvior posted about in 2013. It appears he is no long on the site and the pdf is now pay only.
I finished surgery, rad & chemo in late 2021. To date, NED. However I continue to deal with pain from right shoulder and area (surgery was on the right neck & primary rad was there as well. Pain and using my right arm is getting worse and I've started looking at fibrosis. Seeing 3rd ortho doc soon, am currently seeing someone for swelling as it's gotten worse - the fibrosis and want to find someone who is knowledgeable about radiation fibrosis syndrome to do PT once again. I then found longtermsurviror's link and Stubblefild (who has a bunch of videos that are really helpful).
TIA,
Jim0 -
Thanks so much for the info. I have severely "deconditioned" myself. I am ready to get back at it, and the shoulder is a concern. So far everyone has told me "not related to radiation." Just add this to the list of post treatment "surprises," but great to have something to work with in terms of mitigation. Thanks again!
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I had a thyroidectomy 4/17 with shoulder problems pre surgery. I could tell B4 being put under surgery table was very narrow. Because I already had mindset on protecting shoulders, this stood out to me. I had minor stroke during 9 hours surgery, 75 nodes removed 65 cancerous. No one knows exactly when I had my stroke but they caught it 24 hours later and I have had nothing but problems w my shoulders. Nerve damage on right shoulder but numbness in both arms and hands. I've been through a couple of months PT with little change. Big loss in range of motion and constant pain. Just finished 1st radiation and stiffness of neck is taking priority over shoulders. This is something my surgeon pointed out was not normal but didn't explain how to fix. During radiation and currently I'm waking up out of dead sleep feeling as if being strangled. It is very scary because my neck is literally getting harder and tighter. Anyone know what this is or how to fix?
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Hello, jimijames66, and welcome to the CSN H&N discussion forum.
Sorry you are going through these tough times, but hang in there and keep trying the PT.
I, too, had a lymph node operation, but only one node. The problem was that the cancer had gotten out of the node and spread.
So in operating to remove all the cancer, there was some tissue and muscle mass taken also. This is easy to see around my neck area, sort of sunken and missing fullness.
And in my case, during the operation, nerves were cut, affecting my vocal cords and shoulder also. It affects my breathing. I run out of air pretty quickly and need to pace myself. Range of motion loss. I think this is due to what they had to do to get the cancer out.
It is not uncommon for these types of head and neck operations of this type in this area to affect muscle and tissue, and nerves.
The cancer team you have and I had operated to get all the cancer out; otherwise, it is a useless operation, and the cancer will just start again.
In their efforts, many times other things are cut or removed by necessity that affect our movement or other aspects of our life.
Generally, we have to learn to live with our new normal and do the best we can and in many cases, things do get better, but it is a slow process.
You say, "Currently I'm waking up out of dead sleep, feeling as if being strangled."
This is probably due to the radiation taking effect in the area from the operation, and now the radiation is probably temporarily burning and drying tissue around the throat and or vocal cord area.
With the area being disrupted and radiation applied, the area is shrinking, thus setting up the possibility of shortness of breath.
Also, do you have heavy and stringy phlegm from the radiation?
During my first cancer of throat the saliva was so thick it would get caught in my throat, and as you are doing I would wake up with my air cut off and gagging the thick saliva out so I could breathe again.
You should let your care team know about this problem of waking up and feeling like you are strangled or out of breath. They may want to adjust your treatment situation.
I hope I have helped.
I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.
Our Motto here is NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
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