Have you seen a Rheumatologist to rule out any other inflammatory type diseases?
Just a suggestion.

[/I]QUOTE=fdupshoulders;986242]I don't know if I have TOS. I've seen tons of docs, and nobody has a clue as to what is going on. EVERYTHING has been ruled out. even the TOS surgeons are willing to do my procedure but aren't convinced I have TOS.

My coordination is perfect. My strength is intact. No discoloration, temperature changes, and overall minimal symptoms in my arms/hands at all.

Another thing is that I don't get 'flares' like many people describe on these boards. My pain is always bad, 8/10 constantly unless I'm lying down to take me to a 5/10. If I raise my hands above my body for an extended period of time (like during an MRI) I'll be at a 9/10 for the rest of the day, but that's as close to a flare experience as I know.

Here's a timetable of my symptoms, if anyone else out there has anything similar, I'd really love to know.


Current symptoms – (bilateral)
• Severe dull, achy pain in scapula area, trapezius, sides of neck, occasional hand and feet.
• Occasional muscle twitches, numbness, and tingling in arms, legs, hands, and feet.
• Occasional visual floaters and occasional headaches.
• Occasional mild lower back ache.
-extreme tightness in throat when tilt head back.

-Also, when I tilt my head to one direction, I feel tingling in the opposite side's hand and fingers.

September 2011 – Slight discomfort in left scapula area – first noticed while wearing heavy backpack and riding small mechanical scooter for 1 mile/day. Scapular winging/snapping/grinding present. (after stopped wearing backpack/riding scooter, discomfort only felt while in the sitting position)

July 2012 – Left scapula discomfort increasing, left side of neck extremely tight. Trapezius has achy pain and is always flexed because of assumed overcompensation.

September 2012- Severe dull. achy pain in both left scapula and left side of neck.

November 2012 - Symptoms started on right side, in same order but at 10x the pace. By the end of November the right side of neck and right scapula felt the same as the left

December 2012 – Misdiagnosed with suprascapular nerve impingement at spinoglenoid notch and proceeded with left shoulder arthoscopic subacromial decompression

--no positive result from surgery to date- but now have moderate weakness in various movements.

January 2013 – Pain progressed to the point where I started lying down all day, only leaving to go to the gym for an hour a day, physical therapy, and doctor appointments.

February 2013 – Began experiencing warmth going down my arms. Intense stretching sensation going to my finger tips.

March 2013 – Bilateral leg twitching started in thighs, glutes, and calves.

April 2013- Pain got severe to the point of taking Percocet, even lying down doesn’t alleviate problems like it used to.

-Twitching in legs became more frequent, and occasional pain in feet
- Diagnosed with Thoracic Outlet Syndrome, but disputed amongst many
specialists.

May 2013 – Frequent pain in feet- big toe, in the heel, side, and on the top of the foot.- Right more than left.

Mid-May 2013 – a few days of pain in hand. Mostly along thumb and pinky. –Right more than left.
- Bilateral foot pain intensifies. Legs feel stiff, can’t crouch for more than 10 seconds. (in the past I would frequently crouch when petting dog or picking up something)
- Started waking up from naps/sleep with numb hands and arms-a few times.
- Lower back starting to ache


I have tried: (nothing has worked)
Massage Therapy, Acupuncture, Chiropractic, Cortisone injections, Lyrica, Neurontin, surgery, rest, Scalene Block, Cervical Epidural, PT for over a year (4 different specialists- 4 different approaches)

Pain continues to get worse. Extensive posture training but nothing will stick. Scapulas still wing out and rotate forward, forward head posture unless conscious of it.

What gives slight relief: lying down or pushing head back against high chair, car seat, bed, ground, etc.[/QUOTE]

I have same issue sort-of. I've dealt with the pain I have for 8 years, but to this point, there's been no solid diagnosis and I've seen a ton of healthcare providers. Like you, I have no circulatory symptoms or issues with strength. I do have significant pain at the junction of my neck and shoulder with occasional pain around my shoulder blade. The muscles in my neck, shoulder, and upper back are extremely tight. The first rib on the affected side is elevated and in a fixed position. Over the past year or so, my arm at times falls asleep when sleeping (this is while I'm on my back with my arm by my side).

The only reason I think it may be TOS is because of the rib, but even then I'm not sure. There's nobody that I've found in the Atlanta area that has been able to help.

In the last few months, I have also been waking up with numb arms when sleeping in an otherwise-healthy position. I have recently seen Dr. Sheldon Jordan for Botox and PRP injections. Neither of the sets of injections has worked and I see him for a one-month follow-up this Monday. He believes that my primary problem is scapular instability and that is causing my secondary problem of TOS.

Where you at now? Ive also had "scapular instability" diagnoses and the serratus strengthening just doesnt get me all the way back to 100%, I think my long thoracic nerve is messed up somehow

Since the LTN goes through the Medial scalene isn't it at risk if Botox is injected into the muscle (and some finds its way to the nerve)?

That definitely makes sense yeah.. But why would the medial scalene be upset in the first place? How can I give the LTN some clearance? I wish I could just have a scalenectomy and be done with it

I think the lack of shoulder rehab (I could be wrong, uninformed) with the surgery alone regarded as a treatment could be a possible issue along with the possibility of scar tissue formation if the scalenes are not removed completely or a stub of a rib is left.

Till late last year I couldn't even raise my right arm. I can now abduct it, which is an improvement, but the muscle tension in my back and nerve pain in my arms and hands is a huge issue. I wonder how much of this is actually nerve related as versus CNS mediated.

Wow that's pretty fantastic actually. I mean, abduction is maximum stretch for those nerves so that's awesome you have come so far. I find that I can abduct my arm painlessly but holy moley does it ever grind, my whole scapula and shoulder and neck just let out a gross crunch with abduction. Needless to say, I try to avoid that movement.

I've also wondered that, how much of my pain is my actual nerves and not just a result of the disfunction brought on by my nerves, impossible to tell I guess.

Well I need to clarify, I could raise my arm to a degree but it would cause horrible pain in my upper trap, rhomboids area. I couldn't raise it high either. Now the pain is reduced, and I can actually raise the arm but my UT area becomes solid rock. So improvement, but not ideal.