Shoulder Pain

seeknpeace · November 2004

I am so scared. Sorry to do this topic again, but, can anyone out there who has had a spread to their spine or shoulder blade, tell me how it felt?

Mine is so painful. It is getting worse at an alarming rate. It is bad enough tonite that I have taken 800 mgs of ibupropen and demerol. I could not sleep last nite.

The pain is deep and searing. I have had a torn rotator cuff on the other side before, and it is not like that. From what I have been reading, when you get a spread to this area, you think that you have pulled a muscle. I am so scared.

Jan

wildangel · November 2004

Ok I will explain exactly what it feels like for me when it gets REALLY bad. First I get a pain high up to the inside of the back near the spine below the neck and it goes across to the shoulder but inside the shoulder socket like. Then the pain goes down the back of my arm where it alternates with numb and searng pain. When that pain hits it makes the whole shoulder blade muscle tense up and hurt ten times more.

I got it a lot after the first six months or so. Gradually these episodes have subsided. But if I rake leaves- like I did today I FEEL IT. The pain even radiates down to the top of my arm and into my fingers. The only way I can describe it is burning pain. I am three years out. I had 34 lymph nodes removed.

I have been tested three ways from Sunday and all the tests come back with the same answer- post surgical pain.

What you need is a muscle relaxant. It sounds like you are in so much pain you are going into spasm which hurts more than anythingon this earth.

If you take a bath and soak it will help. After you soak for a while do a little lymphadema massage. Put your arm up on the side of the tub. First massage under your arm, then back around your shoulder and then under your collar bone. Then with your arm bent and fingers pointing to the ceiling start massageing each finger, then the hand, then the wrist and on up to the shoulder again.

I hope this eased your mind a bit. Bing in pain is bad. Being in pain and being scared is HORRIBLE! But please listen - I get this. It isn't cancer spreading or anything like that. Even if you just had a sentinel node they still cut as many nerves as they did when they took out my 34. And those nerves NEVER grow back right and they hurt like hell.

Take care- I hope I helped you a little.

Angela

seeknpeace · November 2004

Hi Angela,

Thank you for taking the time to answer. I don't think that we have the same issue. I only had four nodes removed and I have been relatively pain free, just quirky things, since my bilateral mastectomy last February. This pain is at the top of my spine, and in my shoulder blade. I can't sit, I can't lay, I cannot do anything without the constant dull and searing pain. Then, it will ease up a bit.

I really, from my gut, do not think that this is related to my surgery. I think that if it is not metastasis, it is a really badly pulled muscle or disk.

Jan

wildangel · November 2004

Hey Jan,
No one knows your body better than you. If I was a doctor (yikes!) I would also consider a compressed nerve cause by a cervical disk. I have a friend who had that and she had all the symptoms you did but she got so bad she could barely move her neck. I still STRONGLY recommend a muscle relaxer though. Because no matter what is causing it you are clearly going into spasm and that hurts more than anything.
Can you go to a neuroligist? I think they are better than Orhtopedics because they know nerves better.
GOOD LUCK.
Sorry I couldn't have been more help to you.
Angela

inkblot · November 2004

Hi Jan:

Just wondering how long this has been going on and how many docs you may have consulted about it?

If you've seen only one doctor then it may be a good idea to get a 2nd opinion and/or consult a pain management specialist. It occurs to me that the surgeon who did your mastectomy should be consulted as he/she can perhaps rule out it being related to the surgery?

Another thought is "referred pain"...the origin of the pain is actually someplace else. Just a thought for consideration. The muscles in the neck and upper back are easily strained and can wreak havoc when stressed. It sounds intense though so you need to get to the bottom of it quickly, no matter what's causing it! You're taking an awful lot of meds, with no relief, and that's not something you can safely do, long term.

Keep us posted and I'm hoping the solution is found really soon.

Love, light and laughter,
Ink

inkblot · November 2004

wildangel said:
Ok I will explain exactly what it feels like for me when it gets REALLY bad. First I get a pain high up to the inside of the back near the spine below the neck and it goes across to the shoulder but inside the shoulder socket like. Then the pain goes down the back of my arm where it alternates with numb and searng pain. When that pain hits it makes the whole shoulder blade muscle tense up and hurt ten times more.

I got it a lot after the first six months or so. Gradually these episodes have subsided. But if I rake leaves- like I did today I FEEL IT. The pain even radiates down to the top of my arm and into my fingers. The only way I can describe it is burning pain. I am three years out. I had 34 lymph nodes removed.

I have been tested three ways from Sunday and all the tests come back with the same answer- post surgical pain.

What you need is a muscle relaxant. It sounds like you are in so much pain you are going into spasm which hurts more than anythingon this earth.

If you take a bath and soak it will help. After you soak for a while do a little lymphadema massage. Put your arm up on the side of the tub. First massage under your arm, then back around your shoulder and then under your collar bone. Then with your arm bent and fingers pointing to the ceiling start massageing each finger, then the hand, then the wrist and on up to the shoulder again.

I hope this eased your mind a bit. Bing in pain is bad. Being in pain and being scared is HORRIBLE! But please listen - I get this. It isn't cancer spreading or anything like that. Even if you just had a sentinel node they still cut as many nerves as they did when they took out my 34. And those nerves NEVER grow back right and they hurt like hell.

Take care- I hope I helped you a little.

Angela

Hi Angela:

Hope I don't appear to be a beastie here, but
I wanted to post regarding your saying that a Sentinel Node Dissection nets as many cut nerves, etc. as does the procedure to remove a complete level of nodes:

It doesn't: The Sentinel procedure often only removes one node (maximum of three). The incision is smaller also. The "hot" node(s) to be removed are easily located via radioactivity and/or dye so there's no digging around after them. Only the "hot" nodes are removed. This leaves the vessels, nerves and the tissue in which the nodes are embedded, less traumatized and in most cases, intact. End result is less potential for problems in the majority of cases, such as numbness extending along the underside of the upper arm, lymphedema, pain, swelling, limited range of motion, etc.. The two procedures are very different and the Sentinel node procedure is far less invasive with less damage to nerves, vessels, etc..

This is the main reason the Sentinel procedure is being widely used in women for whom it is suitable: to reduce the risks of complications to women undergoing breast surgery and to determine whether it nets the same amount of accurate, useful diagnostic info, as the more radical, complete removal of a whole level of nodes. While the final determination is yet to be made, the results thus far indicate that the Sentinel procedure is safer, while greatly reducing the risk of lymphedema.

Just wanted to share that as I was concerned that some women may think the two procedures carry the same risks and that is not the case, based upon the currently available data. Anyone who wants more info can go to www.nci.nih.gov and find the procedure detailed there. Also, a quick search on google should net some reliable sources as well.

I had the Sentinel procedure and have had no problems. The incision scar is tiny and it healed amazingly well and quickly following surgery. Not that everyone can expect the same results with anything, but my experience re the Sentinel procedure, was very easy indeed.

Hugs.

Love, light and laughter,
Ink

Gramma44 · November 2004

inkblot said:
Hi Jan:

Just wondering how long this has been going on and how many docs you may have consulted about it?

If you've seen only one doctor then it may be a good idea to get a 2nd opinion and/or consult a pain management specialist. It occurs to me that the surgeon who did your mastectomy should be consulted as he/she can perhaps rule out it being related to the surgery?

Another thought is "referred pain"...the origin of the pain is actually someplace else. Just a thought for consideration. The muscles in the neck and upper back are easily strained and can wreak havoc when stressed. It sounds intense though so you need to get to the bottom of it quickly, no matter what's causing it! You're taking an awful lot of meds, with no relief, and that's not something you can safely do, long term.

Keep us posted and I'm hoping the solution is found really soon.

Love, light and laughter,
Ink

I would like to weigh in on a couple issues here - shoulder pain AND sentinel node pain. I am a three year survivor (stage 1,lumpectomy, sentinel node and 6 other removed, radiation and chemo). First of all, you CAN have pain with sentinel node dissection. I have frequent stiffness and pain that still has not gone away from where the nodes were taken. Even just doing the sentinel they do move nerves around and can cause some damage. I think it just depends on individual nerve reception. I think some of us feel it more than others. I also still have some numbness under my arm so I don't think that all pertains just to patients who have numerous nodes removed. I too am having shoulder pain and have been concerned about it. It's in the shoulder on the opposite side of my surgery. Mine is deep in the joint but still hurts in my neck at times and also get tingling in my arm. I have my 6 month oncology appt in two weeks but wonder if any of you can give me specific questions I should be asking to determine whether this is something I should be concerned about?

Sheryl

inkblot · November 2004

Gramma44 said:
I would like to weigh in on a couple issues here - shoulder pain AND sentinel node pain. I am a three year survivor (stage 1,lumpectomy, sentinel node and 6 other removed, radiation and chemo). First of all, you CAN have pain with sentinel node dissection. I have frequent stiffness and pain that still has not gone away from where the nodes were taken. Even just doing the sentinel they do move nerves around and can cause some damage. I think it just depends on individual nerve reception. I think some of us feel it more than others. I also still have some numbness under my arm so I don't think that all pertains just to patients who have numerous nodes removed. I too am having shoulder pain and have been concerned about it. It's in the shoulder on the opposite side of my surgery. Mine is deep in the joint but still hurts in my neck at times and also get tingling in my arm. I have my 6 month oncology appt in two weeks but wonder if any of you can give me specific questions I should be asking to determine whether this is something I should be concerned about?

Sheryl

Hi Sheryl:

Thanks for weighing in. As I stated, we're all different and no two of us seem to respond the same to anything. The SLND is simply less problematic for most women according to the data.

Sorry to hear that you're having pain in your shoulder, opposite surgery side. Wondering if perhaps BECAUSE you've had pain on the surgery side, you've naturally taken up the slack (with heavy packages, lifting, etc.) with the opposite side and it may be feeling the strain? Just a thought.

Another thought is tendon problems. I had chemo also and from that, I had quite a lingering problem with my right wrist and forearm. (The arm used for infusing chemo) Surgery finally resolved the problem but I also had a brief bout or two of the same thing in my hip, about a year post chemo. It cleared up of its own accord, thank goodness!

Another thought is the rotator cuff. From what I understand, this condition can cause radiating pain into the neck region.

Best wishes and hope your doc finds out what the cause is and can address it rapidly. Nothing's worse than lingering pain.

Love, light and laughter,
Ink

seeknpeace · November 2004

Hi All,

I have only been seen at the emergency room and I see my oncologist tomorrow for my regularly sched. appt.

When it started hurting, or being uncomfortable, late Sept., I thought it was due to lugging the heavy books around that were associated with my training, so I changed the way that I was carrying them and changed arms. Trying to baby the one that is hurt.

Then, it began to hurt much worse, until last week, it became unbearable. And, I am lugging much less now and most times, nothing at all. So, I called the ortho guys first. When they found out it may be related to work, they had to turn it over to workmens comp and I was sent to the emergency room by WM comp.

In the emerg. room, they did regular xrays and ruled out inflamation in that area, or any other things that can be found on xray and sent me to my oncologist for mris. One of the reasons that they did this, I think, is that we have two major med. ctrs here. I use Forsyth med ctr and cancer center. I was seen at the Wake Forest/Baptist hosp emerg room because I was working in the hosp that day and it was more convenient. I believe that they sent me back to my onc and the forsyth ppl as that is where my records are and where my docs are.

The onc. ordered an mri, which I had today, and I will get the results tomorrow. I told the tech that I knew that she was not allowed to give a diagnosis or really discuss what she saw, but, since I wanted an mri of my spine AND my shoulder and they only ordered spine, was the fact that they ordered only spine sufficient, or should I insist on more. She told me the spine one got the info that I needed. IE: She saw the problem. So, now I know that I have either disk issues, or something else in the spine itself.

When I see my onc tomorrow, she will be able to either treat me or refer me. Regardless, I am on workmans comp until they determine that it is not related to lifting those damn books. My training leader told me today that she is gonna see about getting me a pull thing for my books. I have searched and had no luck. I had one years ago when I traveled with my job but, sold it at a yard sale. So, that will help alot, regardless of whether it is something that I injured or cancer that was aggravated or just began acting up coincidentially.

Soon as I know for sure, I will let you guys know. I don't think that it is due to my mastec. at all. I did have the sentinel node, and I have numb areas under my arm, but, I am ok with that. I do hate the numb abdomenal area. That sucks, especially when it itches.

I will holla back soon as I know something. I hate the not knowing. That is the worst!!! I took my demerol and I am gonna just float around tonite on the couch! ha. ;o)

Jan

seeknpeace · November 2004

inkblot said:
Hi Sheryl:

Thanks for weighing in. As I stated, we're all different and no two of us seem to respond the same to anything. The SLND is simply less problematic for most women according to the data.

Sorry to hear that you're having pain in your shoulder, opposite surgery side. Wondering if perhaps BECAUSE you've had pain on the surgery side, you've naturally taken up the slack (with heavy packages, lifting, etc.) with the opposite side and it may be feeling the strain? Just a thought.

Another thought is tendon problems. I had chemo also and from that, I had quite a lingering problem with my right wrist and forearm. (The arm used for infusing chemo) Surgery finally resolved the problem but I also had a brief bout or two of the same thing in my hip, about a year post chemo. It cleared up of its own accord, thank goodness!

Another thought is the rotator cuff. From what I understand, this condition can cause radiating pain into the neck region.

Best wishes and hope your doc finds out what the cause is and can address it rapidly. Nothing's worse than lingering pain.

Love, light and laughter,
Ink

Hey!! I had a torn rotator cuff a couple years ago on the other side from my current pain and my cancer and it was a ****. You really cannot use the arm well for anything. For me, this is not the same, but, I have thought of rotator cuff too. But, I guess with the spine mri showing something today, it must be either a disk bulging or something like that. I think that a pinched nerve is found another way, right?

krisrey · November 2004

seeknpeace said:
Hi All,

I have only been seen at the emergency room and I see my oncologist tomorrow for my regularly sched. appt.

When it started hurting, or being uncomfortable, late Sept., I thought it was due to lugging the heavy books around that were associated with my training, so I changed the way that I was carrying them and changed arms. Trying to baby the one that is hurt.

Then, it began to hurt much worse, until last week, it became unbearable. And, I am lugging much less now and most times, nothing at all. So, I called the ortho guys first. When they found out it may be related to work, they had to turn it over to workmens comp and I was sent to the emergency room by WM comp.

In the emerg. room, they did regular xrays and ruled out inflamation in that area, or any other things that can be found on xray and sent me to my oncologist for mris. One of the reasons that they did this, I think, is that we have two major med. ctrs here. I use Forsyth med ctr and cancer center. I was seen at the Wake Forest/Baptist hosp emerg room because I was working in the hosp that day and it was more convenient. I believe that they sent me back to my onc and the forsyth ppl as that is where my records are and where my docs are.

The onc. ordered an mri, which I had today, and I will get the results tomorrow. I told the tech that I knew that she was not allowed to give a diagnosis or really discuss what she saw, but, since I wanted an mri of my spine AND my shoulder and they only ordered spine, was the fact that they ordered only spine sufficient, or should I insist on more. She told me the spine one got the info that I needed. IE: She saw the problem. So, now I know that I have either disk issues, or something else in the spine itself.

When I see my onc tomorrow, she will be able to either treat me or refer me. Regardless, I am on workmans comp until they determine that it is not related to lifting those damn books. My training leader told me today that she is gonna see about getting me a pull thing for my books. I have searched and had no luck. I had one years ago when I traveled with my job but, sold it at a yard sale. So, that will help alot, regardless of whether it is something that I injured or cancer that was aggravated or just began acting up coincidentially.

Soon as I know for sure, I will let you guys know. I don't think that it is due to my mastec. at all. I did have the sentinel node, and I have numb areas under my arm, but, I am ok with that. I do hate the numb abdomenal area. That sucks, especially when it itches.

I will holla back soon as I know something. I hate the not knowing. That is the worst!!! I took my demerol and I am gonna just float around tonite on the couch! ha. ;o)

Jan

Hi Jan,
Yes waiting is the very worst, I just hate it!!!
I just want you to know that I am thinking of you and will keep my fingers crossed for you tomorrow.
Prayers coming your way...
Kris

Shoulder Pain

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