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.

Many of the symptoms are not a solid fit for TOS, unless there is more than a single condition going on.

Usually feet, legs, low back don't present unless TOS has been present many years. Due to the myofascial connection and possible compensation postures..

Have somewhat rare conditions been clearly ruled out too?
Spine vertebra /disks all fine?

Have you explored our other forum topics , maybe something one one of those will fit with the other symptoms, or sound familiar?
http://neurotalk.psychcentral.com/index.php

C, T, L spine all fine. Brain MRI fine, MS ruled out. I've looked at other forums and nothing really fits.

I don't have numbness in my legs or feet but I definitely have muscle twitches throughout my, primarily in the legs. The muscle twitching began a bit before my other symptoms but has worsened over the years.

I do have pain in my left foot (also my worst TOS side). I don't know if it's guarding (and tensing my muscles) or what, but the pain in my foot seems to get worse when my TOS pain in worse.

I also have pain in my leg and foot, occasional numbness but usually nerve pain traveling down to my toes. If I walk long I get spasms and am limping. This has been getting worse over time on my worse side.

Yes, I have what I believe is nerve pain in my legs....when sleeping if I go into a "fetal position" I will wake up with pain in my legs, almost like a spasm? and to get relief have to stretch out my legs. Is especially bad on my operative side if I have done alot of standing on previous day.

And none of you have any low back/spinal issues?

This is very interesting.
If you had xrays /MRI and no issues were found, then it could be myofascial/postural related.

The good thing is, it should be treatable with good PT/bodywork, addressing the whole body instead of only the upper body TOS type symptoms.

Possibly Sharon Butler's gentle stretching technique, for self care as she addresses the fascia connection.
I don't know if she added a whole body section to her site though. Might be good to request.


It might be interesting to have a time frame noted.
How long you had TOS sx , and how long til the lower body got these symptoms.

Ithink u need to see a really good Neurologist the leg n foot sx dont son d like tos tN[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]

No, I have never had any issues with lower back or spine ....the pain in my legs is mostly apparant during sleep and started at about 20 months post op, so I believe it is the nerve damage in the neck area which has traveled to the lower extremities.....peripheral neuropathy??
I showed evidence of Horner's Syndrome in my left eye (surgical side) and I do not sweat on the left side either and was told that typically it is gone at about 3 months.... I am now about 28 months post op and told that it is permanent. Facial numbness and strange sensation that brings on lightheadedness and nausea and was told it is likely Vagus nerve damage which I have researched and that can cause alot of different symptoms ....heart rate issues, digestion problems and others. I know I am not a doctor however I know myself pretty well and never had these issues prior to surgery.

Mine also started post op, about 8 months, at 10 now. Same as chloecasey described, I believe it to be peripheral neuropathy but Jomar you are right, it could also be myofascial however my PTs have tried addressing this with no luck. I will keep trying with the PT with the leg issues. I also have facial numbness, had it pre-op on the operative side but its much more often now and on both sides.

However I have not done any xrays or MRIs of my L-spine. That is something I am now considering....

I have plantar fascitis as well and have very recently begun wearing custom orthotics, hoping that will help. No matter how much I stretch my legs every day they, especially the right side is just as tight and painful the next day.