Hi,

TOS hit me really young, too. I feel your frustration! Perhaps your surgeon just meant that he or she had done all that they could do for you, surgery-wise. But take heart; there are several more options for you to try. Including additional surgery, if it comes to that (with a different surgeon).

You could have a pec minor release, for one thing, if the pec minor is a culprit muscle in your case. Also, did your surgeon completely remove your scalenes, or just 25% (as many do, first time around - and some cut just enough to get that first rib out). If not, you may need a complete scalenectomy at some point. You might also want to make sure that ALL of the first rib was removed (it can grow back, otherwise!). Finally, down the road, surgery for lysis and neurolysis may be indicated if scar tissue becomes an issue for the blood vessels involved.

If I were you, my next step would be to find a knowledgable pain management specialist with a background in neurology (rather than anesthesiology or physiatry), who treats TOS (be careful! Some docs don't "believe" in TOS!). From there you can ask for a prescription for physical therapy (again, you'll want a TOS-savvy PT, as traditional PT can be harmful for TOS'ers). Even though physiotherapy was not helpful for you before your surgery, now that you are 'decompressed' you may have a different result. Your pain doc may also want to try trigger point therapy, nerve blocks, certain meds for nerve pain, etc. to see if that helps. A good body worker (Alexander Technique, Feldenkrais, etc.) or chiro can be useful, too.

Sounds like the nerves running down your arms are getting flared up when you are running, from the weight of your arms. Probably the ulnar nerve (most of us have lower trunk injury to the brachial plexus). Try fast walking instead, using pockets or fanny packs to support the weight of your arms, to prevent this from happening.

Ultimately, your goal should be to learn as much self-care stuff as you can (deep breathing techniques, stretches, exercises, postural adjustments, ergonomics, etc.), so you can practice this at home on a daily basis. This will reduce or eliminate the need for dependence on third parties to keep the TOS monster at bay, and give you much more control over your own course of treatment in the long run.

Take heart! Good luck to you, and I hope you feel better soon.