I can so relate to your post. When I'm having a rough time pain-wise in fact, I also call it a "migraine" for the simple fact that more 'civilians' can relate to that term… Meanwhile, I'm dying with intractable neck/head/shoulder/arm and hand pain! They don't need or want the particulars.

There's just something about the pain being constant that can deprive us of any sense of control over this godawful situation. No surcease! But I see hope in the fact that your sx do calm down sometimes (maybe not today!), and that you intuitively know that it has to do with positions and movements. It makes me think a good bodyworker could really help you to capitalize on that! There are national networks that could help you to find a good Feldenkreis or Hellerwork practitioner in your area, for example.

Do you have prescription pain meds on board for when things become unbearable for you? A good Pain Management Physician? If not, you could explore some options by finding one who is knowledgable about TOS, both in terms of more effective meds, botox injections, surgical recommendations, etc. Ask also for a referral to a good Pain Psychologist. Can't change the pain, but the suffering is the piece we can work on!

Speaking of surgery, the two people who come to mind for a complex case like yours are Dr. Brantigan in Denver and Dr. Donahue in Boston. Dr. B was actually Dr. David Roos' star student at one time; Dr. R, now retired from surgery, is the 'grandfather' of the transaxillary first rib resection for use in the tx of TOS. Dr. D is obviously more geographically desirable for you, of course. Both are highly skilled, experienced vascular surgeons, with stellar reputations.

I know it's hard to fathom that NYC does not have a top TOS doc somewhere in its midst, but that is the case as far as I know. I hate to say this, but according to a top TOS doc I met with (who shall remain nameless, for obvious reasons), Dr. Schneider is a "butcher." The doc who said this has had many occasions to see - and try to deal with - the aftermath of Dr. S' work in the course of his own practice, and I do not believe that the statement was made lightly. I'll leave it at that.

Most surgeons worth their salt are going to want you to try a course of PT with a TOS-savvy therapist and other conservative measures such as botox injections, etc., before having you jump up on their operating table. They'll also want to order some dx studies (3-D CT scan, blocks, tests for subclavian bruits, EEG/NCV tests [running all the way up and behind the neck to test the C-8 and T-1 nerves], etc.). It would not surprise me if Dr. D's office could refer you to a good PMP and/or PT in NYC. If nothing else, I would bet that an extensive consultation with Dr. D re the specifics of your case might give you some comfort and hope about things.

You also may want to try a couple of the "Intelliskin" products (posture shirt, bra), the iPosture device or Spinal Q brace, for example, to see if you can find some relief that way (use the forum search function re "posture shirt" and several threads will pop up for you on this stuff). Others swear by Kinesio Taping to help their bodies to adopt better posture - which could be helpful for you if you need to avoid any of the pressure on your clavicle the posture shirts might bring on.

We all need to vent sometimes living in a world of pain, so please know that we are here to listen when your TOS journey becomes overwhelming. It's important to express those feelings, helps to take the power out of them I think. So no worries there!

I hope that you are feeling better by the time you read this, and that some of these suggestions from your fellow TOSers are helpful for you. Good luck as you continue your search for the right docs and therapists to help you along the way. And keep posting! Let us know how things are going for you.

Take Care,
Alison