Possible neuritis in left shoulder

[alanb]

Hello,

I injured my back and left shoulder in 1988 at age 23 while, ironically, lifting someone in a first-aid class.  I had a complete workup between 1988 to 1991, which included a cervical CT scan, cervical MRI, and a thoracic outlet evaluation (all normal), and 3 EMGs (somewhat abnormal, although they could not pinpoint the problem), among other tests.  The best diagnosis the doctors could come up with is suprascapular neuritis.  A suprascapular nerve release did not help any.  The pain is a burning pain that is associated with almost any use of the left shoulder (for example, typing for ten seconds will cause it to burn for the rest of the day; other uses cause it to burn for days).  Nerve blocks didn't help, and physical therapy just made things worse since any use causes the burning.

Here I am, 13 years later, wondering if another EMG is in order to see if anything has changed.  There is a great deal of atrophy in the shoulder, and mobility is now limited because it gets little use.  Also, someone in our new town asked me if I had an MRI of the shoulder -- I didn't, and I'm wondering if that would be helpful.  I moved two months ago and do not yet have a doctor whom I can trust, so any feedback would be helpful.  (If these tests may be helpful, I'd like to push for them if the primary care doctor is hesitant to do any testing.  -The university's health plan is an HMO, so a referral is necessary for testing.)

Thanks for any help.

Regards,
Alan

[snowgoer]

Hello,
Thought i'd add my two cents worth here as I too have had a heck of a time with my shoulder and finding someone who understands what the diagnosis is. I had what they thought was brachial neuritis later thought to be entrapment of the suprascapular nerve, which occurred following surgery for rotator cuff repair. Eventually I had an anterior cervical fusion for herniated c5-6. I truly thought that was the answer, but unfortunately I still suffer pain, and I must say Alan, it is exactly as you describe! I also have atrophy, mostly of the infraspinatus, and no ability to externally rotate my arm.
Having said that, I have found through internet research an MRI test called MR neurography (see www.neurography.com) that allows them to directly visualize the nerves and find if any impingement exists. None of my docs knew of this, but will order it for me and I hope to have it done soon, even though I must fly out of state to have it done. It will also help diagnose thoracic outlet which is what it sounds like in Tammy's case.
Just thought i'd pass on the info! Good luck.

[tammy59]

I was injured '90 on the job. I injured my neck and shoulder. I developed fibromyalgia when the muscle strain didn't ever get better.  I recieved numerous trigger/point injections (7-9) places at a time, including my neck.
In '94-95 I began having seizures. I was sent for CT Scans etc. everything normal. I continued to push myself to work (Postal work lifting heavy mail) working 3rd shift. My snycope episodes became more and more frequent.
In '96 the Ortho dr referred me to a Pain Clinic for Cervical Epiderals at C-4,C-5.  This helped so much. I also have radiopathy pain of the ocpical nerve at C-2The snycope episodes continued though.
I wasn't getting any answers as to what the cause was. My family dr only sent me to the Neurologist, when the test he did were normal. My physician didn't seem to want to follow up with a diagnosis. The last week I worked in'96 I had five episodes in one week. So the Ortho dr said "NO more work until we find out what's going on."  I was scared, I didn't know what was happening. Sometimes I would get a warning, Dizziness,sweating cold sweat, vision blurry tunnel vision and sparkles. A sizzling sound in my right ear. My heart would feel like empending doom. It would feel like I was choking. Sometimes this would be the first sign of an episode. It would feel like someone was pouring boiling water down both ears. My knees would buckle and I would fall.  Or I would feel real sick to my stomach, I would stumble to the bathroom.  Most of the time it felt like it would go both ways, and I would loose control of my bladder and bowels, sometimes even before I could get to the bathroom, then I would usually fall off the toliet. If someone spoke to me I could hear them, but could not answer. It seemed like I was in a deep hole.
If I was at work I would try to drive home. One time I was all over the road, nearly hitting mailboxes on both sides of the road. I became disoriented, and didn't know the way home. I crawled on my hands and knees to the porch, when I stood up I fell over against the door bell.  My husband was in the bed. In '97 I had gone out to eat with my family, we stopped by the grocery store on the way home. I started feeling sick, like I was going to pass out. We left the store and my husband drove, I was arguing ,out of my head, sort of ,that he wasn't taking me home. I kept hollaring to hurry, or I would use the bathroom in my pants, I had all the symptoms described above. I don't remember getting home, they walked me to the bathroom.  Put me on the toliet. I was swaying, swinging my arms about, my mouth was drawn to one side, I didn't know who I was or where I was. I fell off the toliet, and they sat me back up. They called 911. They took me by ambulance to the hospital.
Called the Ortho dr at home, he said to call a Neurologist in and run a CT Scan. It was normal. Said to follow up with a Neurologist ASAP.
I requested that my family dr refer me to Duke University Medical Center. I saw a Neurologist. He wanted me to continue treatment with the Pain Clinic. He did not order any test. He referred me to a Rhuemotologist at Duke. Because of the weakness on my left side, my hand is very weak, and you can't get a blood pressure reading in that arm. It stays colder than my right. And he noticed some swelling in the joint at the wrist, and I described weakness in my left ring and pinky fingers.
The Rhuemotologist x-rayed my hands and did blood work. Did a complete physical exam. Identified 18/18 trigger points and diagonised me with Fibromyalgia. He recommend weight loss, exercise, and modified work. Did not diagnosis snycope until I got a letter this week, He said that he thought it was vasovagal snycope. (this is the year 2001). He did not recommend or educate me as to what this is or what can be done. So I researched the internet. Boy! I so scared, all these years I could have dropped dead, and out of all the doctors I've seen no one seems to want to help me with this diagnosis.
I had my last Neurologic work up in'97. CT Scan,EEG,Holter Moniter were all normal.
The follow up Neurologist from the seizure attack diagnosed Migraine Seizures.
Don't I need a Cardiologist for a definite diagnosis?

[CCF-Neuro-M.D.-JT]

Sorry to hear about your pain.  With 13 years out from the initial injury, your symptoms no longer sound like a suprascapular neuritis. There is a syndrome called Reflex Sympathetic Dystrophy which is a hyperactivity of the sympathetic nervous system that causes increased sensitivity to pain in the affected area, burning, swelling and skin changes over time.  In some cases it starts days or weeks after an injury and can last weeks to years.  Nerve blocks help in most cases (though I know it didn't in yours) special surgeries to remove the nerves, and steroid injections.

It may be a good idea to take a second look at your shoulder after all this time, expecially since you continue to have pain despite trying all those therapies. Consider seeing a neurologist who should be able to direct you to the appropriate followup testing such as MRI and EMG after a careful examination.
Best of luck to you.

[alanb]

I should add that medication (e.g., anti-inflammatory, Elavil) and a TENS unit used in the past have not provided any relief.  Also, the suprascapular notch was entered from the top of the shoulder. (I keep saying shoulder, but the burning pain actually occurs in the upper part of the back under the shoulder blade.)  And recently, I found out by accident that rubbing a spot (a trigger point, I guess) at the top of the scapula provides a little relief when the burning is present.

Regards,
Alan