C5-C6 issue affecting my shoulder?

@amywood20 You story is similar to my own. The symptoms and tender spots you've described are mine too. Did you have an injury that caused your spine problem? The reason this may be important is because if a whiplash caused your annular fissure at C5/C6, it may have also caused thoracic outlet syndrome which causes nerve and vessel compression at the junction of the neck and the shoulder. The problem is that TOS is poorly understood by many doctors unless you are in a place that can diagnose and treat it and I had been told I didn't have it because it's rare. TOS can be caused by a whiplash, a repetitive stress injury, poor slouching posture, physical build or a combination of those and what's rare about it is finding doctors who understand it. I've had problems in both shoulders, a SLAP tear in one, and a frozen shoulder caused in the other after a diagnostic MRI with an injection of gadolinium into the shoulder capsule. That was done because the shoulder was unstable, and the injection caused much bigger problems and I was in so much pain, it even hurt to breathe. I couldn't move my shoulder for 6 weeks, and then I had adhesive capsulitis and went through physical therapy for that. I had been diagnosed with TOS a few years earlier by a neurologist after carpal tunnel surgery didn't fix all of the issues. I told the orthopedic doctor this when he was diagnosing my shoulder instability and he didn't believe me until a Doppler ultrasound demonstrated that my circulation to my arms was cut off when I raised them or turned my head. I had a bulging disc too during this time which later down the road would rupture, grow bone spurs and all of that would compress my spinal cord making spine surgery necessary.

When you loose your lordotic curve in the cervical spine because of muscle spasms or posture, it also pulls into your shoulders and chest. When you slouch forward, your head and shoulders are forward and no longer aligned properly. All of that also pulls on your neck and the muscle spasms you have there.The tightness in the neck and chest can cause a twist and create a functional scoliosis of the thoracic spine. So if you stand sideways to a mirror, take a good look and see if your shoulder lines up under the center of your neck, or is it forward of your neck? Do your hands turn bluish, purplish and get cold? When you shoulder is pulled forward because of the tightness in the front of the chest, it causes the shoulder blades to move to the sizes and wing outward. Muscles connect your cervical spine to the shoulder blades and these often get tight and painful. The Pec minor muscle in the chest attaches into the arm pit in front and gets too tight and pulls the head of the Humerous forward causing it to slip it's position in the shoulder socket and causes a clunk or click. There can also be impingement at the top of the shoulder where movement can cause it to hit the Acromion process. The Pec minor tightness is one of the TOS impingement points. There is another where nerves exit the spine between scalene muscles on the side of the neck, and between the collarbone and rib cage.

I was in physical therapy working on my TOS when my disc ruptured, and over a couple years, bone spurs grew trying to stabilize the spine. I had all of the symptoms from everything all at once and in addition to that, the spinal cord compression was generating pain all over my body and spine surgeons told me that the pain in my legs was not coming from my cervical spine, and it was enough that they dismissed me instead of looking for a cause. I had a cervical epidural injection done as a diagnostic procedure that was probably supposed to demonstrate that the pain wasn't coming from my neck, but it had to opposite effect. The injection temporarily took away all the pre-existing pain I had, and the surgeon never discussed the results with me. All 5 of the surgeons who saw me missed the same thing and none of them believed that spinal cord compression in my neck could cause pain in my legs and body, but that was the source of my pain. I found medical literature with similar cases and I contacted a neurosurgeon at Mayo with that and he did surgery that fixed all that pain. Now that I have resolved the spine issues, the remaining issues are from thoracic outlet syndrome and I am still in therapy working on that.

It seems to me that you have symptoms that could be TOS. You mentioned that an epidural spinal injection didn't help, and it may be that isn't the source of the pain. You doctor may be repeating this if they don't know what is wrong. You may want to think about if that is worth the risks to repeat it. The steroid crystals will obscure the image on an MRI for about 6 weeks until it has been fully absorbed. I had an adverse reaction to my epidural injection that caused intense burning stabbing electric shock pain in my dominant hand that went on for weeks. Even a year later, I still had cold sensitivity in that hand. I refused to repeat the experience. It wouldn't solve my problem and I didn't want the risk. So ask yourself if you really want to repeat an epidural knowing that the first one didn't help. That might be telling you that the problem is somewhere else and your doctors haven't figured this out yet.

Coming to Mayo is a good choice. I had my spine surgery in Rochester. I was not limited to seeing only 2 doctors at Mayo. After the appointments with the neurologist, I was referred to a thoracic surgeon and testing lab for thoracic outlet and they did Doppler studies with tiny blood pressure cuffs on each of my fingers. They evaluated this to determine if my spine or my TOS was the bigger problem. That was before I met the neurosurgeon. I was told by one of the prior surgeons that shoulder blade pain is caused by C5/C6 disc issues. I think it is worth asking about TOS and spine issues while you are there. They have intake questions that asks for other issues you want to be seen for while you are there. TOS caused numbness and tingling, arm pain and weakness for me, and at one point tightness caused me to loose all sense of feeling in half of my lower arm. My physical therapist was able to resolve that. I didn't have radiculopathy or compression in the nerve roots where nerves exit the spine. You mentioned compression of nerve roots, and that that will follow the Dermatome map. Spinal cord compression does not follow a specific map of deficit because the entire big bundle is compressed. I did have muscle atrophy from cord compression in my shoulders and arms and lost about 50% of my muscle mass. A lot has come back since spine surgery.

Here are some links.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Excerpts from "Cervical cord compression presenting with sciatica-like leg pain" from the European Spine Journal
http://europepmc.org/articles/PMC3111492/reload=0
Physical therapy with Myofascial release that I do for TOS
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jenniferhunter THANK YOU for all of this! As I have been researching possibilities, TOS was one that I have been wondering so we are on the same page there. When I see the specialist the first part of November I certainly plan to ask about it. I've even mentioned that one to my husband. He doesn't understand or care to research medical stuff so he usually doesn't have anything to add. None of this was from whiplash or any sort of an accident. I used to be a runner and then when I started having knee surgeries starting in 2008-2016 (lateral release on both knees and then three additional surgeries on the right for scar tissue) I turned to weight lifting. Had a hip labrum repair in 2016 as well so I focused a lot on upper body since lower body was out for a while. Seems everything we do causes neck movement and with weight lifting, it's a given. When I am at Mayo next week for my PKD/PLD I have on my list of questions the lower lumbar issues I have and what role, if any, the PKD/PLD is playing with the disc issues there. I am blessed at this point that I don't have an enlarged abdomen from the disease and actually, am doing pretty well. I do have some large cysts in my liver which is one reason I am coming to Mayo. Liver docs here don't know from it and the two I have seen said there is nothing they can do for me. I do know my liver is big and that is probably pushing on things, with the kidneys could be too. I will slip in the cervical spine issues too. In fact, I was planning on bringing my recent imaging in the off chance they let me meet with someone there in the spine area. I know as far as setting an actual appointment, they would not let me do so UNLESS I met with an internal medicine doc, as that is who I was told they would set me up with if I had more than two issues to be addressed. I would have lost the appointment with the kidney doctor that I have really been wanting to see. Of course the internal medicine specialist probably would have consulted with her or others but I didn't want to risk it. She is the reason I am coming to the Rochester location, as quite a few in a Facebook group I am in for the disease have seen her and rave about her. She's very popular in that group. She is the one that also scheduled me with the liver specialist, as those appointments are pretty much back to back on Tuesday. But yeah, I am not giving up and I will go to specialist after specialist if I have to until I feel like I am being heard and all possibilities are being looked at. I am one that believes we have to be our own healthcare advocate. It would be wonderful if the spine specialist here locally I will be seeing can figure all of this out. This neuroscience center is the best in our state, which is another reason it takes so long to get an appointment there. It is taking me just as long to get in there as it was to get in with the kidney specialist at Mayo. LOL.

How did they repair your labrum? I have a tear in one labrum and detached on the other and my local docs are only offering hip replacement. Really don't want to do that but the groin pain is killing me. Luckily the pain in my back and butt are about 2 points higher on the scale so distract me from it :-).

@amywood20 You story is similar to my own. The symptoms and tender spots you've described are mine too. Did you have an injury that caused your spine problem? The reason this may be important is because if a whiplash caused your annular fissure at C5/C6, it may have also caused thoracic outlet syndrome which causes nerve and vessel compression at the junction of the neck and the shoulder. The problem is that TOS is poorly understood by many doctors unless you are in a place that can diagnose and treat it and I had been told I didn't have it because it's rare. TOS can be caused by a whiplash, a repetitive stress injury, poor slouching posture, physical build or a combination of those and what's rare about it is finding doctors who understand it. I've had problems in both shoulders, a SLAP tear in one, and a frozen shoulder caused in the other after a diagnostic MRI with an injection of gadolinium into the shoulder capsule. That was done because the shoulder was unstable, and the injection caused much bigger problems and I was in so much pain, it even hurt to breathe. I couldn't move my shoulder for 6 weeks, and then I had adhesive capsulitis and went through physical therapy for that. I had been diagnosed with TOS a few years earlier by a neurologist after carpal tunnel surgery didn't fix all of the issues. I told the orthopedic doctor this when he was diagnosing my shoulder instability and he didn't believe me until a Doppler ultrasound demonstrated that my circulation to my arms was cut off when I raised them or turned my head. I had a bulging disc too during this time which later down the road would rupture, grow bone spurs and all of that would compress my spinal cord making spine surgery necessary.

When you loose your lordotic curve in the cervical spine because of muscle spasms or posture, it also pulls into your shoulders and chest. When you slouch forward, your head and shoulders are forward and no longer aligned properly. All of that also pulls on your neck and the muscle spasms you have there.The tightness in the neck and chest can cause a twist and create a functional scoliosis of the thoracic spine. So if you stand sideways to a mirror, take a good look and see if your shoulder lines up under the center of your neck, or is it forward of your neck? Do your hands turn bluish, purplish and get cold? When you shoulder is pulled forward because of the tightness in the front of the chest, it causes the shoulder blades to move to the sizes and wing outward. Muscles connect your cervical spine to the shoulder blades and these often get tight and painful. The Pec minor muscle in the chest attaches into the arm pit in front and gets too tight and pulls the head of the Humerous forward causing it to slip it's position in the shoulder socket and causes a clunk or click. There can also be impingement at the top of the shoulder where movement can cause it to hit the Acromion process. The Pec minor tightness is one of the TOS impingement points. There is another where nerves exit the spine between scalene muscles on the side of the neck, and between the collarbone and rib cage.

I was in physical therapy working on my TOS when my disc ruptured, and over a couple years, bone spurs grew trying to stabilize the spine. I had all of the symptoms from everything all at once and in addition to that, the spinal cord compression was generating pain all over my body and spine surgeons told me that the pain in my legs was not coming from my cervical spine, and it was enough that they dismissed me instead of looking for a cause. I had a cervical epidural injection done as a diagnostic procedure that was probably supposed to demonstrate that the pain wasn't coming from my neck, but it had to opposite effect. The injection temporarily took away all the pre-existing pain I had, and the surgeon never discussed the results with me. All 5 of the surgeons who saw me missed the same thing and none of them believed that spinal cord compression in my neck could cause pain in my legs and body, but that was the source of my pain. I found medical literature with similar cases and I contacted a neurosurgeon at Mayo with that and he did surgery that fixed all that pain. Now that I have resolved the spine issues, the remaining issues are from thoracic outlet syndrome and I am still in therapy working on that.

It seems to me that you have symptoms that could be TOS. You mentioned that an epidural spinal injection didn't help, and it may be that isn't the source of the pain. You doctor may be repeating this if they don't know what is wrong. You may want to think about if that is worth the risks to repeat it. The steroid crystals will obscure the image on an MRI for about 6 weeks until it has been fully absorbed. I had an adverse reaction to my epidural injection that caused intense burning stabbing electric shock pain in my dominant hand that went on for weeks. Even a year later, I still had cold sensitivity in that hand. I refused to repeat the experience. It wouldn't solve my problem and I didn't want the risk. So ask yourself if you really want to repeat an epidural knowing that the first one didn't help. That might be telling you that the problem is somewhere else and your doctors haven't figured this out yet.

Coming to Mayo is a good choice. I had my spine surgery in Rochester. I was not limited to seeing only 2 doctors at Mayo. After the appointments with the neurologist, I was referred to a thoracic surgeon and testing lab for thoracic outlet and they did Doppler studies with tiny blood pressure cuffs on each of my fingers. They evaluated this to determine if my spine or my TOS was the bigger problem. That was before I met the neurosurgeon. I was told by one of the prior surgeons that shoulder blade pain is caused by C5/C6 disc issues. I think it is worth asking about TOS and spine issues while you are there. They have intake questions that asks for other issues you want to be seen for while you are there. TOS caused numbness and tingling, arm pain and weakness for me, and at one point tightness caused me to loose all sense of feeling in half of my lower arm. My physical therapist was able to resolve that. I didn't have radiculopathy or compression in the nerve roots where nerves exit the spine. You mentioned compression of nerve roots, and that that will follow the Dermatome map. Spinal cord compression does not follow a specific map of deficit because the entire big bundle is compressed. I did have muscle atrophy from cord compression in my shoulders and arms and lost about 50% of my muscle mass. A lot has come back since spine surgery.

Here are some links.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Excerpts from "Cervical cord compression presenting with sciatica-like leg pain" from the European Spine Journal
http://europepmc.org/articles/PMC3111492/reload=0
Physical therapy with Myofascial release that I do for TOS
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jenniferhunter I still have a few weeks before my appointment with the spine doc. I looked at the links you included and found the training and rehabilitation one very interesting. Although the shoulder on the affected side has had issues in the past, it seems they really flared up when I was in PT for the other shoulder that has the full thickness tear. The physical therapist kept having me do the retract and down with my shoulder blades. I then started doing that when weight lifting and have to wonder if I do have TOS, as from what that article suggests, doing that makes the symptoms worse. I have not been doing any shoulder exercises recently, as I don't know what is wrong and don't want to cause harm. Well this afternoon I did a few external rotations with a stretchy band (physical therapist thought it would be good to do to help strengthen the infraspinatus) and it did not feel good. I had the shoulder blade down and back, as the PT said to do it that way to keep the traps from firing (and I hadn't read the article yet). Caused the spot in the upper back to really ache and even had some aches around the back of the neck. Do you think that movement would cause an issue if it is indeed TOS even if I didn't do the down and back? I keep thinking in the back of my mind that I do have that low-grade partial tear of the infraspinatus and maybe that is why it ached. I iced it but that seemed to make it worse.

The other interesting thing in that article was how raising the arm up can also cause it to hurt worse. I noticed that when I was lying in bed and put my arm above my head while on my back. Do you know if lying on your back would cause TOS symptoms? I noticed sometimes when I am in the recliner it will ache and even bring about muscle spasms, sometimes even on both sides. I will say I am at such a loss as I wait to get in with the specialist here. I need to get it figured out so I can get the right shoulder operated on to fix the full thickness supraspinatus tear. I wasn't having much discomfort with it but for the past week and a half or so I am feeling it in the front of the shoulder. That's the only spot it hurts though.

Mentally, I have not been doing well with this. I keep thinking about the possibility that the left side stuff will be determined to be from the shoulder and that the MRA on it missed something big. The thought of both shoulders needing surgery brings on so much anxiety. Both hurt but in different ways. I wouldn't know which to do first. But, then I have the hand tingles and it makes me think it's not the shoulder...unless I have two separate issues.

I'm also having issues with the left ankle/foot, as it tingles and has on and off for several months. I finally had it looked at and the urgent care doc (couldn't get in with my regular doc) x-rayed it. Nothing found so there isn't a fracture. He suggest an ultrasound (can't remember what it's called but it starts with a M). I am waiting for the scheduler to call to get it set up. I am hoping to have it done and with results before I see the spine doc. I was going to mention it to him. And as if that wasn't fun enough, I am scheduled to have a right knee scope to remove scar tissue on the 8th, just a few days after the appointment with the spine doc. I wanted to get it done before shoulder surgery so at least I could walk comfortably afterwards while I can't do much of anything else. That is why I decided to finally have the other ankle/foot looked at. If there is an issue there and I have to stay off of it, I won't be able to have knee surgery. I know once I have shoulder surgery it will be a very long time before I could get the knee scoped due to having to use crutches for a few days. Knee doc mentioned that. Really wanted to get it done but now I just don't know. So yeah, I am a little stressed with so many uncertainties.

@amywood20 Sometimes we have to take things one day at a time. TOS requires patience for recovery, and there is surgery for TOS, but my doctor advised against it because creating scar tissue there will just add to the tightness that already exists, so I wouldn't assume a diagnosis of TOS would automatically indicate surgery. My therapy is myofascial release for TOS, and some strength training, but limited, so as not to kick up symptoms. I would think that using crutches will hurt in your present condition, so think that over if you really want to do a surgery that will require crutches for a while. Also, don't diagnose yourself. No doctor will want a patient telling them how to do their job. the Mayo doctors can take care of things, and your job is to explain your symptoms. They can easily test for TOS by listening to your pulse in your neck and have you turn your head. When you have TOS along with a cervical spine issue, you have overlapping symptoms.

Yes, you can have TOS symptoms while on your back. It is raising the arm that brings it on. The problem is the front of the chest is too tight and it causes the shoulder blades to wing out. Bad slouching posture causes symptoms too.

The tingling in your leg can be from a pelvis dysfunction and it can seem like a lower spine problem. My TOS causes tightness from my jaw to my pelvis on one side and it causes my pelvis to twist out of shape. You might want to read the training and Rehabilitation article on that. https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

Good luck with appointments.

@jenniferhunter I know, one day at a time. I need to figure out how to get out of my head. That's my personality and once I fixate on something it is hard to put it down, so to speak. The spine specialist I will be seeing is not at Mayo since I live nine hours away but if I don't get answers here, I will definitely go to Mayo. My foot is in the door since I had one of their rehab docs look at my imagines and do a few in office tests. She felt an EMG would be the next step since she wasn't able to draw any firm conclusions. Mayo could have done it a few days later but I was flying back home the next day. We'll see what the spine doc wants to do. My fear is that he will think it's the shoulder. The shoulder doc thinks it's the cervical spine so if that were to happen I am left in the middle. I will say the full thickness tear in the other shoulder feels nothing like the other one. I need to get all of this figured out soon since the full tear is starting to give me grief whereas a month ago it was pretty mild. As far as the crutches, that should only be for a few days and I can start walking normally as tolerated. There isn't a tear or anything to repair as it's just cleaning up scar tissue. I've had it done before but can't remember how much I used the crutches. I want to say not much at all. I do have a walker from a hip scope three years ago and could use it, putting the weight on my hands. Probably not much better but maybe some. I need to dig it out and try. I just know if I don't do it now it will be many, many months before I will be able to due to shoulder surgery. I've been dealing with it for a year and a half already. I'm leaving the door open to canceling it but very well may not. At least it would be one thing fixed I could check off. Thanks for the link and all of your responses!

@amywood20 I understand the frustration of being caught in the middle when doctors think it is something else. I went through that too. I always had a plan B for the next doctor I would try if things didn't work out. I went through 5 spine surgeons who could all read my MRI, but none would help me because they didn't understand how to connect my symptoms to the imaging. Don't stress, just move on and start over with a new opinion if that happens. Things happen in time, and we can't control when it will work out, or in what order or what other thing could change our plans. What seems right at the beginning, may not be, and a new day could bring a different answer that no one thought about before and a better solution. Sometimes you have to choose your priority.

My two years of searching for and not finding help gave me more time to be with my dad as he was dying, and I was taking care of him and my mom. If I had surgery and was in recovery, I would not have been able to be there, and missed the last time with him. It was the hardest 2 years of my life and I was in a lot of pain because I needed spine surgery. Right after my dad passed, I got the call from Mayo for appointments, and I was able to take care of myself. Remember to breathe, and savor every day even when the days are challenging. There is always a lesson there, if you can quiet your mind and listen.

@jenniferhunter I still have a few weeks before my appointment with the spine doc. I looked at the links you included and found the training and rehabilitation one very interesting. Although the shoulder on the affected side has had issues in the past, it seems they really flared up when I was in PT for the other shoulder that has the full thickness tear. The physical therapist kept having me do the retract and down with my shoulder blades. I then started doing that when weight lifting and have to wonder if I do have TOS, as from what that article suggests, doing that makes the symptoms worse. I have not been doing any shoulder exercises recently, as I don't know what is wrong and don't want to cause harm. Well this afternoon I did a few external rotations with a stretchy band (physical therapist thought it would be good to do to help strengthen the infraspinatus) and it did not feel good. I had the shoulder blade down and back, as the PT said to do it that way to keep the traps from firing (and I hadn't read the article yet). Caused the spot in the upper back to really ache and even had some aches around the back of the neck. Do you think that movement would cause an issue if it is indeed TOS even if I didn't do the down and back? I keep thinking in the back of my mind that I do have that low-grade partial tear of the infraspinatus and maybe that is why it ached. I iced it but that seemed to make it worse.

The other interesting thing in that article was how raising the arm up can also cause it to hurt worse. I noticed that when I was lying in bed and put my arm above my head while on my back. Do you know if lying on your back would cause TOS symptoms? I noticed sometimes when I am in the recliner it will ache and even bring about muscle spasms, sometimes even on both sides. I will say I am at such a loss as I wait to get in with the specialist here. I need to get it figured out so I can get the right shoulder operated on to fix the full thickness supraspinatus tear. I wasn't having much discomfort with it but for the past week and a half or so I am feeling it in the front of the shoulder. That's the only spot it hurts though.

Mentally, I have not been doing well with this. I keep thinking about the possibility that the left side stuff will be determined to be from the shoulder and that the MRA on it missed something big. The thought of both shoulders needing surgery brings on so much anxiety. Both hurt but in different ways. I wouldn't know which to do first. But, then I have the hand tingles and it makes me think it's not the shoulder...unless I have two separate issues.

I'm also having issues with the left ankle/foot, as it tingles and has on and off for several months. I finally had it looked at and the urgent care doc (couldn't get in with my regular doc) x-rayed it. Nothing found so there isn't a fracture. He suggest an ultrasound (can't remember what it's called but it starts with a M). I am waiting for the scheduler to call to get it set up. I am hoping to have it done and with results before I see the spine doc. I was going to mention it to him. And as if that wasn't fun enough, I am scheduled to have a right knee scope to remove scar tissue on the 8th, just a few days after the appointment with the spine doc. I wanted to get it done before shoulder surgery so at least I could walk comfortably afterwards while I can't do much of anything else. That is why I decided to finally have the other ankle/foot looked at. If there is an issue there and I have to stay off of it, I won't be able to have knee surgery. I know once I have shoulder surgery it will be a very long time before I could get the knee scoped due to having to use crutches for a few days. Knee doc mentioned that. Really wanted to get it done but now I just don't know. So yeah, I am a little stressed with so many uncertainties.