C5-C6 issue affecting my shoulder?

Posted by amywood20 @amywood20, Wed, Sep 18 12:11pm

Hello! According to my MRI, I have a bulge with a small annular fissure (noting it can be symptomatic) at the C5-C6, DDD and a small bone spur causing foraminal narrowing on the right side and foraminal stenosis of the right. I also have some slight reversal of the normal curve that I think has to do with the osteophytic change at the C5-C6 level. I have battled this issue for over 7 years and during that time it has come and gone. It is back and causing some left hand tingles and a bit of numbness, although if you scratch the hand I still have feeling in it and can use it. I also have a painful spot near the shoulder blade and can even get discomfort at the front of the shoulder near the armpit. Most of this is on the left arm/upper back, yet the narrowing is on the right foramen. I don't know if the bulge is centrally located or to one side. I do get a few tingles on the right hand but it's less frequent than the left. For a while now I was chasing the issue of if my left shoulder issue was from the shoulder or the neck. I had a MRI with contrast done on that shoulder and the only thing it showed was a low grade partial tear of the infraspinatus, most likely from weight lifting and just wear and tear being that I am 43. Shoulder doc said that many have these small tears and they do not cause pain. Because of the hand issue and how I did fine with the in-office shoulder manipulation, he feels my issue is from the cervical spine. He didn't even want to try a cortisone injection into the shoulder to see if it would help, noting he really things the shoulder is not the issue. I have had one cortisone injection into the neck without any relief. I am getting a second one next week. I see a neurosurgeon in November. Here is where I get pretty confused. I know the C5-C6 innervates the infraspinatus (ironic that is where my partial tear is) and from what the pain doc noted when getting the first injection, the pain around the shoulder blade is common. Does disc issues like this actually cause the shoulder to not function quite like it should or does it just cause it to hurt? Example: went to physical therapy this morning and had traction done on the cervical spine for the second time. Came home and as I was reaching down to pick up a cat bowl of water from the floor with the left arm I heard a clunk, which sounded like it was coming from the back of the shoulder. Then I felt discomfort in that one spot near the shoulder blade and some hand tingles. Can these disc issues cause the shoulder blade not to work quite like it should? Is the C5-C6 issue what cause this to happen? Because I know there is a low grade partial tear in that shoulder anytime it makes a weird noise or I get an odd discomfort my mind wants to blame it on that even though the shoulder doc says it's not the issue. Kinda of wish I didn't know about it, as it has really been exhausting mentally. I can't stop questioning things. Anyway, was just curious as to how these disc issues/nerve issues actually affect the movement of extremities. I hear people say that the C5-C6 can cause shoulder pain but I've not really heard much about how it can affect the movement of it. Side note, I also have an issue at my L4-L5 and L5-SI. I will be coming to the Rochester Mayo on Oct 1st for the first time to be seen for my PKD/PLD. I wanted to have a specialist there go over my cervical spine and lower lumbar MRIs but from what I was told, you can only see two docs per visit. I have already been scheduled with two doctors for the PKD/PLD so that's my limit. Where I live PKD and PLD isn't as common so traveling out of state for that reason is much more important than having my spine images looked at. Would have been neat though since I will be there anyway. 🙂

Hello @amywood20. I'd like to share my own brief experience with shoulder pain, an MRI and what happened after. I would like to add I am not a medical professional and am speaking strictly from my own experience. Although I don't have back issues, I had been having a lot of shoulder pain with specific movements and was experiencing some loss of strength as a result. I had an initial exam that deemed it was likely a pinched or irritated nerve, so I did have an injection which helped mildly but caused more discomfort than anything. I then had an MRI that showed a pinched nerve. Based on my own manipulation test and strength test they deemed I also did not have damage. However, during my operation for a nerve release they found a pretty extensive rotator repair. It surprised them because of my strength and mobility, but they thought it was a possibility as an MRI doesn't always conclusively show everything.

@jenniferhunter had issues with her C5-C6 area as well. Perhaps she could share her experience with this and whether or not it caused any shoulder issues. I'd also like to invite @grandmar and @jkgraham393 who also talked about cervical issues and may be able to share if they affected their shoulders.

@amywood20, your providers said your issues may be caused by your back, but have they discussed any other possible causes like a pinched nerve or the possibility of a more extensive tear? Was there a possible specific incident that caused the shoulder pain to start? In my own experience, I was told that I likely tore my shoulder in small increments as I couldn't remember a specific time of extreme discomfort or pain.

REPLY
@JustinMcClanahan

Hello @amywood20. I'd like to share my own brief experience with shoulder pain, an MRI and what happened after. I would like to add I am not a medical professional and am speaking strictly from my own experience. Although I don't have back issues, I had been having a lot of shoulder pain with specific movements and was experiencing some loss of strength as a result. I had an initial exam that deemed it was likely a pinched or irritated nerve, so I did have an injection which helped mildly but caused more discomfort than anything. I then had an MRI that showed a pinched nerve. Based on my own manipulation test and strength test they deemed I also did not have damage. However, during my operation for a nerve release they found a pretty extensive rotator repair. It surprised them because of my strength and mobility, but they thought it was a possibility as an MRI doesn't always conclusively show everything.

@jenniferhunter had issues with her C5-C6 area as well. Perhaps she could share her experience with this and whether or not it caused any shoulder issues. I'd also like to invite @grandmar and @jkgraham393 who also talked about cervical issues and may be able to share if they affected their shoulders.

@amywood20, your providers said your issues may be caused by your back, but have they discussed any other possible causes like a pinched nerve or the possibility of a more extensive tear? Was there a possible specific incident that caused the shoulder pain to start? In my own experience, I was told that I likely tore my shoulder in small increments as I couldn't remember a specific time of extreme discomfort or pain.

Jump to this post

Hi Justin – thanks for the response. In terms of other possible issues the shoulder orthopedic doc has not discussed anything else other than it's most likely from the neck. I do have a low grade partial rotator cuff tear but neither him or the PA thought that is was causing any issues. They weren't concerned about it. The MRA did not show anything else. There was not a specific incident leading to this. I have had neck issues in the past but they tend to come and go. This time seems a bit different though. I believe the reason the cervical spine is being pointed at as being the issue is because of the hand tingles I get. It is mostly in the left hand but I do get it on occasion in the right. I am seeing a neurosurgeon the first week in November, as it takes quite a while to get into this neuroscience center. I do not plan to have any surgery on the cervical spine though; just trying to figure out what is going on and other solutions. I actually tried to make an appointment with a spine doc at Mayo since I will be there on the 1st but because I am seeing a kidney and liver doc, those are the two allowed doctors per visit. Coming up there for my PKD/PLD is more important than my spine, as people here aren't as in-tune with the disease. But yeah, I do agree that MRIs don't always tell the whole story. A good test of that will be when the other shoulder has surgery to repair the full rotator cuff tear it has. Will be interesting to see if that's all they find. That surgery will not happen until the neck issue is resolved though.

REPLY

@amywood20, that is a lot of diagnoses, procedures, and unknowns to deal with. While we wait for some more members to join this conversation, here are a few others on Connect I think you may find worth your time to both look through and participate in if you feel comfortable:

– Groups > Transplants > PKD Kidneys removed at time of transplant > https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/
– Groups > Joint Replacements > Shoulder replacement: Post-surgery suggestions > https://connect.mayoclinic.org/discussion/curious/ (although you are not having a replacement, the recovery is closely related)
– Groups > Bones, Joints & Muscles > Rotator cuff surgery > https://connect.mayoclinic.org/discussion/rotator-cuff-surgery-1/

REPLY
@JustinMcClanahan

@amywood20, that is a lot of diagnoses, procedures, and unknowns to deal with. While we wait for some more members to join this conversation, here are a few others on Connect I think you may find worth your time to both look through and participate in if you feel comfortable:

– Groups > Transplants > PKD Kidneys removed at time of transplant > https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/
– Groups > Joint Replacements > Shoulder replacement: Post-surgery suggestions > https://connect.mayoclinic.org/discussion/curious/ (although you are not having a replacement, the recovery is closely related)
– Groups > Bones, Joints & Muscles > Rotator cuff surgery > https://connect.mayoclinic.org/discussion/rotator-cuff-surgery-1/

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Thank you!

Liked by grandmaR

REPLY

@amywood20
Hi!
It was suggested I share my story.
Over a decade ago I had pain in my neck that radiated into my shoulder.
I went to a pain doc and got injections.
The injection lasted YEARS!!!!!
In addition, I had horrible pain in my left shoulder.
Turns out I tore cartilage.
I had surgery to repair it then PT.
I lifted weights and believe it was that which caused the tear.
My PT said no weights.
My surgeon said weights were fine.
I listened to my surgeon and retore the cartilage.
After the second surgery, I waited to lift until PT said it was fine.
No problems.
About 1-1/2 years ago, I started getting horrible headaches that woke me up each morning.
After being up about 15 min the pain would go away.
However, when sitting, if my head was not resting agaist the back, I'd get terrible neck and shoulder pain.
My pain doc was not able to hit the right spot to give me relief.
It was at that point and because my lumbar spine was also giving me issues, that I decided it was time to see a neurosurgeon.
Both my cervical and lumbar spines are pretty messed up.
He decided to do the cervical furst.
Now I know why, it's less painful and easier to recover.
Symptoms worsened while I waited fir surgery.
Head and all the way to the finger tips with pain and tingling.
I had C5/6 replaced with artificial discs.
Within days, all the symptoms were gone, including the surgical pain
I was told before surgery that the % of failed replacements is very low and he only had to remove the artificial discs once.
Well, it's now been a bit over a year and I am starting to get symptoms again.
They aren't as bad as before, but I didn't want to wait.
I saw my surgeon and had some tests.
I feel several months ago and probably nudged the discs.
There is also something else he saw.
Bottom line, I am having a shot for dx purposes and another surgery is likely.
He will probably remove the artificial discs and do a fusion.
There is another area in trouble, too.
While he is in there, he'll most likely do that, too.
I honestly hoped to stay away from fusions.
The weight of the fusion often impacts the discs above and below, which likrely will result in a fusion there, too.
This failure had NOTHING to do with the quality of surgery.
It is probably because of the fall AND/OR my body rejecting the discs.
I have found that if you continue to baby yourself like you do right after surgery, the surgery will not fail.
Sadly, many people feel so good, they go right back to their life like before surgery, that caused the issues in the first place.
Hope this helps…
Ronnie (GRANDMAr)

REPLY
@grandmar

@amywood20
Hi!
It was suggested I share my story.
Over a decade ago I had pain in my neck that radiated into my shoulder.
I went to a pain doc and got injections.
The injection lasted YEARS!!!!!
In addition, I had horrible pain in my left shoulder.
Turns out I tore cartilage.
I had surgery to repair it then PT.
I lifted weights and believe it was that which caused the tear.
My PT said no weights.
My surgeon said weights were fine.
I listened to my surgeon and retore the cartilage.
After the second surgery, I waited to lift until PT said it was fine.
No problems.
About 1-1/2 years ago, I started getting horrible headaches that woke me up each morning.
After being up about 15 min the pain would go away.
However, when sitting, if my head was not resting agaist the back, I'd get terrible neck and shoulder pain.
My pain doc was not able to hit the right spot to give me relief.
It was at that point and because my lumbar spine was also giving me issues, that I decided it was time to see a neurosurgeon.
Both my cervical and lumbar spines are pretty messed up.
He decided to do the cervical furst.
Now I know why, it's less painful and easier to recover.
Symptoms worsened while I waited fir surgery.
Head and all the way to the finger tips with pain and tingling.
I had C5/6 replaced with artificial discs.
Within days, all the symptoms were gone, including the surgical pain
I was told before surgery that the % of failed replacements is very low and he only had to remove the artificial discs once.
Well, it's now been a bit over a year and I am starting to get symptoms again.
They aren't as bad as before, but I didn't want to wait.
I saw my surgeon and had some tests.
I feel several months ago and probably nudged the discs.
There is also something else he saw.
Bottom line, I am having a shot for dx purposes and another surgery is likely.
He will probably remove the artificial discs and do a fusion.
There is another area in trouble, too.
While he is in there, he'll most likely do that, too.
I honestly hoped to stay away from fusions.
The weight of the fusion often impacts the discs above and below, which likrely will result in a fusion there, too.
This failure had NOTHING to do with the quality of surgery.
It is probably because of the fall AND/OR my body rejecting the discs.
I have found that if you continue to baby yourself like you do right after surgery, the surgery will not fail.
Sadly, many people feel so good, they go right back to their life like before surgery, that caused the issues in the first place.
Hope this helps…
Ronnie (GRANDMAr)

Jump to this post

Goodness @grandmar that is a lot. I have had varying opinions on the weight lifting as well. The PT place the neuroscience center likes to use did just that. Years ago I went to one therapist for my cervical spine and lower lumbar. He said no squats, no deadlifts, etc. Fast forward to this year I went back there as a self referral just to get an eval. The other therapist (they only have two) told me I NEEDED to keep lifting and not to stop those things. These guys work in the same place. My current therapist for my torn shoulder has also been trying to help my other issues. He didn't want me to stop lifting. I had to keep explaining that when you have neck issues and your hand is tingly it's hard to get motivated to go lift (I haven't lifted in two months). I reached out to my long time favorite therapist and she was happy I had stopped lifting due to all I am dealing with. So yeah, what's a person supposed to do?!?!? I have heard with disc issues that often times after one area is fused a person will need to have the levels above and below done as well, as they become weaker. But, I know sometimes surgery is necessary and it's a risk to take. I am not there yet.

Liked by grandmaR

REPLY
@amywood20

Goodness @grandmar that is a lot. I have had varying opinions on the weight lifting as well. The PT place the neuroscience center likes to use did just that. Years ago I went to one therapist for my cervical spine and lower lumbar. He said no squats, no deadlifts, etc. Fast forward to this year I went back there as a self referral just to get an eval. The other therapist (they only have two) told me I NEEDED to keep lifting and not to stop those things. These guys work in the same place. My current therapist for my torn shoulder has also been trying to help my other issues. He didn't want me to stop lifting. I had to keep explaining that when you have neck issues and your hand is tingly it's hard to get motivated to go lift (I haven't lifted in two months). I reached out to my long time favorite therapist and she was happy I had stopped lifting due to all I am dealing with. So yeah, what's a person supposed to do?!?!? I have heard with disc issues that often times after one area is fused a person will need to have the levels above and below done as well, as they become weaker. But, I know sometimes surgery is necessary and it's a risk to take. I am not there yet.

Jump to this post

@amywood20
Is your head yet?
I stopped lifting until the PT said it was safe and then I used very light weights and few reps.
I built up slowly.
Yes, surgery is sometimes needed.
For me, after more than a decade of chronic pain, it was my time surgery.
Since I waited so long, I developed severe nerve damage in my legs and some in my arms.
Therefore, my PERSONAL suggestion is to see a neurologist and have an EMG, nerve test, to make sure you aren't doing any irreversible damage by waiting.
Good luck!
Ronnie

REPLY
@grandmar

@amywood20
Is your head yet?
I stopped lifting until the PT said it was safe and then I used very light weights and few reps.
I built up slowly.
Yes, surgery is sometimes needed.
For me, after more than a decade of chronic pain, it was my time surgery.
Since I waited so long, I developed severe nerve damage in my legs and some in my arms.
Therefore, my PERSONAL suggestion is to see a neurologist and have an EMG, nerve test, to make sure you aren't doing any irreversible damage by waiting.
Good luck!
Ronnie

Jump to this post

@grandmar I am looking forward to my appointment with the neurosurgeon/neurologist in November. I hope additional testing will be recommended. If not, I am going to ask why.

Liked by grandmaR

REPLY
@amywood20

@grandmar I am looking forward to my appointment with the neurosurgeon/neurologist in November. I hope additional testing will be recommended. If not, I am going to ask why.

Jump to this post

@amywood20
Sounds like a good plan!!!!!

Liked by amywood20

REPLY

@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/

REPLY
@jenniferhunter

@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/

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@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.

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@amywood20

@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.

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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 :-).

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@feckert52

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 :-).

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@feckert52 It was done via arthroscopy. The other hip also has a torn labrum but it is not causing issues so we are leaving it as is. Make sure you find a good orthopedic doctor that specializes in hip scopes if you end up having it done instead of the replacement. Not all are overly good with repairing the labrum via scope, as I think that it's only become more common over the past 12 years or so.

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Thank you for the info!!!

Liked by amywood20

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@jenniferhunter

@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/

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@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.

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