Hi all,

Long time reader/lurker but first time poster as I have been hesitant to chime in since I can still work and my condition is not nearly as bad as most of yours. I don't have issues doing most day to day things unless they require a lot of arm strength or endurance both of which I have very little. Here's my brief story:

I am 34 and was diagnosed with bilateral TOS a few years ago (2007). From what I can figure out, my TOS gradually developed over a long period of time as a kid due to a number of factors such as repetitive strain from swimming and computer use, bad posture, minor whiplash in an accident, etc. I had inklings something was not right as early as 2000 but it wasn't until late 2006 when it really became noticeable.

Symptoms:
-Poor circulation in arms/hands, especially when raised > 90 degrees. This results in fatigue, heaviness and tingling.
-Poor circulation in feet
-Winged scaplua on both sides (much worse on right)
-Lots of muscle tension everywhere, especially scalene/traps/scapula/upper spine area
-Tender spots all over that cause aching when pressed with light/moderate pressure
-Cracking joints, especially my shoulders and neck which get cracked repeatedly throughout the day
-Some minor tingling and coldness in my hands
-Random aching in various places

Things I have tried:
-Saw a neurologist focused on TOS and was diagnosed with bilateral TOS and very minor carpal tunnel.
-Physical therapy for ~3-4 months, didn't seem to do much good at all.
-Massage therapy for ~3 months, went once a week and it loosened me up a bit but the relief only lasted a day or so. Eventually it stopped having much affect at all.
-Saw a chiro who had me do spinal manipulation for ~6 months to help with posture, now I go every 6 weeks. Also found my vitamin D levels were quite low so I am taking that as well.

No idea what to do next, but that's for another post!

Sounds like you've exhausted the conservative route. Not sure what your options are at this point other than to risk a surgery if symptoms are debilitating. Have you had an EMG/NCV test done by any neuro(s)? If they come back normal, you'd likely be dx'd as disputed NTOS. From research, disputed NTOS fares relatively poorly in surgery, compared to other TOS types. As such, I'd be reluctant to gamble... but that's just me.

I'm in the same boat, bilateral NTOS - probably disputed. My EMGs/NCVs came back normal. Going to see another specialist to explore future options but I am not in a rush to have the surgery. You can always "do" the surgery, but can't "undo" it. And the risk of complications are very high.

My thoughts:

-- My GP prescribed a muscle relaxant (diazepam, 2.5 or 5 mg) which I use as needed, which is about 4 X a week. It's been very helpful with reducing the muscle tension which has reduced my symptoms.

-- In terms of supplements, search our forums for "magnesium".

-- Use a "break reminder" program on your computer and during your 10 min break, get out of the chair and then pace and/or stretch.

-- Have you considered a scalene block or botox?

HTH

WOW...your history is very similar to myself. But I'm dx bilateral A/VTOS with some neuro on right side and mild carpal tunnel, also regarding the general muscle and joint aches and cold hands/feet etc. Out of curiosity, do you have Raynauds Syndrome?? That was one of my first complaints.
I'm giving acupuncture a go for the 1st time on Saturday, so I will let you all know if I find it beneficial.

"Break reminder" sounds like a great idea. Thank you for suggesting!