Thoracic Outlet Syndrome was ruled out after lots of testing. I've had MRIs of my brachial plexus and spine and neither showed where the compression was happening. My orthopedist thinks that it's just inflammation from my RA attacking the joints in my neck. But I have had radio frequency ablation, two facet blocks, and three cervical epidurals on my spine. Shouldn't all that control the inflammation?

Yeah, it's really frustrating. Also since the tests keep coming back normal and they also won't give me any painkillers until they figure it out. One doctor even tried to convince me that I have fibromyalgia, which makes no sense. Autoimmune diseases don't just manifest over night like that.

Thanks anyway for your response :-)

Why won't you have PT again? Did it make things worse? I also did PT for over a year before the injury. I have scoliosis as well so I have a lot of spine issues. The PT didn't really help but it was nice getting free massages, lol.

well i don't know.

I saw a neurosurgeon for the eventual deadening in the left arm and had neurosurgery to the cervical spine with a cadaver bone and then a plate and 4 screws.

not implying you need that - but this was all diagnosed with an MRI once function ceased.

you mention shoulder but then you mention arm weakness and so forth.

who is treating you? an orthopedic? or a neurologist/neurosurgeon?

what did the MRI of the cervical from C3 to C7 show? (or rather what does the physicians interpretation of the cervical MRI say?)

depot

I am seeing an orthopedist, a neurologist, and my Rheumatologist. The MRI of my spine just showed some degeneration of the discs, but nothing serious. There was no sign of where my nerves were being compressed. I saw multiple orthopedic surgeons and they all said that they didn't know what was wrong and that surgery wouldn't fix the problem.

OK, ,I could not tell if you had a specific cervical/MRI. Sorry I can be daft :)

that's great you don't need surgery and do not have root compression. I am sorry that you are still having restrictions and limitations from it. I hope they solve it for you soon.

depot

Thanks for everyone's response! My Rheumatologist figured it out yesterday. The nerves are being compressed by muscle spasms in my shoulder. I was also still in pain because of inflammation in my collarbone/breast bone joint. He gave me a cortisone shot in it and I'm starting to feel better

That's great you found some relief.
I had very much the same symptoms, even had collarbone pain.
Mine was orginally from the spine. Now with RA thrown in.
With the spinal problems the shoulder was the most painful area. Like in your case the doctors were baffled. No real neck pain but headaches would occur time from time & very nasty headaches.
Because the MRIs indicated minor damage every doctor ruled the spine out. So had shoulder decompression after discovering arthritis, bursitis & tendonitis in the shoulder.
only to have the shoulder pain with the numbness remain after recovery.
11months later another doctor that knew the symptoms were spinal ordered another MRI. That last one showed progression of a herniation.
All along it was the spine yet the tests simply did not show the severity. Spinal Surgeon found a mess he did not expect.
First signs of RA after those surgeries.

The headaches are very much like a migraine but we discovered are from the Occipital nerve.

Muscle spasms can set off nerve pain. Sure must be some nasty spasms. Had the same type of problem land me in the hospital. Can be a viscous circle with nerves & muscles.
RA has made its contribution to the neuropathy.
Perhaps considering trying a muscle relaxer if the problem persists.
Sure sounds like spinal. Then I'm no doctor.
I'm curious when you had the blocks & ablation done did it help the shoulder pain?
How long ago did you have the blocks & ablation done?
I go the same route with blocks & Rhizotomy.
Guess you never know. Hope the relief continues.
Sammy

Wow, sounds like you've been through a lot! Yeah, it's really frustrating when tests don't reveal the problem.

The muscle spasms are pretty severe. That shoulder is actually higher than the other because the muscles are so tight. I had all the blocks and ablation between February and July. My least cervical epidural was about two weeks ago. None of the procedures had any effect on my shoulder. The muscle spasms do make the neck pain worse though since they pull on my spine.