HELP: Constant, Intense Neck Pain & Headaches for Years

Hi,

I’m hoping someone will have an idea of what might be causing my neck pain, as I’ve had the same problem for years and have never been definitively diagnosed.

I’m 25 now and started experiencing this issue when I was 18. Out of nowhere, I developed an inability to raise my left arm 90 degrees or more and had intense weakness and pain. An EMG caused me to be diagnosed with Long Thoracic Nerve Palsy. My early symptoms were cleared up pretty quickly via physical therapy and strengthening of the arm. Within weeks, I had full range of motion and strength back, although I’ve had a little bit of scapular winging ever since. As this issue began to go away, though, I developed intense pain on the left side of my neck, which radiated into my shoulder (in the form of muscle pain and occasional spasms) and into my head (in the form of what I think is an intense cervicogenic headache). I originally thought that this had to be directly related to my Long Thoracic Nerve Palsy, but I’m not sure anymore. Due to that thought, though, I originally perused treatment for Thoracic Outlet Syndrome — which doctors were never actually certain I had. I had a First Rib Resection, which didn’t help, as well as Neurolysis, which I don’t think helped either. I’ve also gone back to physical therapy multiple times, which hasn’t caused any improvement.

To best describe the source of my pain, I’d say that it feels like something on the left side of my neck — at approximately the C2-C3 level — is being pinched at all times. I can’t tell if it feels like it’s a nerve or a muscle or if it’s being pinched by vertebrae or by other structures (tight muscles, maybe). The more active I am and the more I press around on and manipulate my neck (in an effort to relieve pain), the more painful it gets. Certain positions also exacerbate the pain. I sometimes get the sensation that one of the structures in my neck is “rolling over” the painful spot — which sometimes causes a popping sound. I’ve gone back and forth between being convinced that I have a pinched nerve and that it’s more of a muscular issue (myofascial pain, etc.). I just got a Facet Joint Injection about half a week ago and it doesn’t seem to be helping, although Facet Joint Pain/Syndrome seemed to be a promising diagnosis.

Muscular tightness and pain in my neck and shoulder is constant, but not a big issue compared to the other pain I have. The pain at the source and the constant headaches it causes are much worse. I think I also have minor blurry vision as a result. Another minor side effect is that I get numbness and tingling in my left arm when I hold it in certain irregular positions. The confusing thing is that when I point out to doctors where my neck pain is, they immediately rule out thoracic nerve issues and other things that would cause symptoms in the arm. I think it’s possible that I have 2 separate issues.

I’ll lay out everything in an easier to read format in case that helps:

Major Symptoms:

• Intense neck pain originating in a specific spot, approximately at the C2-C3 level on the left side
• Sensation of the painful area being pinched at all times, but sometimes being pinched with more force
• Sensation of the painful area being “rolled over” and popping when my neck/head move in certain ways
• Intense (cervicogenic?) headaches that make it feel like my eyes are going to pop out of my head

Minor Symptoms:

• Tight muscles in the left shoulder and arm
• Occasional numbness and tingling in certain positions
• Blurred vision
• Fatigue
• Slight scapular winging
• Slight shoulder instability

Unsuccessful Surgical Procedures:

• First rib Resection
• Neurolysis
• Facet Joint Injection

Other Unsuccessful Procedures:

• Numerous Trigger Point Injections
• Numerous Epidurals
• Botox Injection
• Nerve blocks

Tests Done (that have shown nothing):

• Numerous MRIs
• Numerous EMGs
• Numerous X-rays
• CT Scan
• Ultrasounds

I’m curious if anyone else has experienced similar symptoms. Any help, ideas, or advice would be extremely appreciated!

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