Can anyone give me any sort of idea what the worst case outcome of TOS would be if left untreated and doing the same repetitive motion that caused it in the first place?

Just my 2 cents.... This varies a great deal from person to person, but I think without any treatment (that helps), it could worst-case lead to permanent and ever-worse nerve damage, not to mention the debilitating pain levels that would be associated with that. If it has a vascular portion, as opposed to strictly neurogenic, then you could also be looking at blood clots. Weakened musculature would likely be another problem.

again, that can vary HUGELY from one person to the next.

KLS,
do you mean no PT, bodywork therapy or no self care- nothing at all???

I think at some point you'd be hurting so bad you would seek some kind of care.

Much simpler to change career/job before you get into that situation.

Explore some self care options and try to minimize the effects of the work postures and uses- ie: ergonomics, postures and stresses

I've definitely reached that point already! I'm just getting into a situation financially that I may have no choice but to return to my job and my doctor is pushing me in that direction. Your answers were pretty much what I expected, I guess I just kind of wanted to hear it from someone else so I can tell my attorney just how serious this is so maybe he will hurry up and get the WC situation straightened out so I can quit worrying about money and work on getting better!

I kind of was in that situation too - having to return to work - because the PT I had was making me feel better-
so dr thought I was"healed" -
but after going thru that similar cycle with neck/shoulder pains a few times already I knew it was a matter of time before I "broke' again.

That was when I got Sharon Butlers TOS program and during breaks and lunch and when I got home -I would do the postures & stretches.
I really think it helped me to stick it out for almost 3 months...
of course I would get home from work and do nothing else but try to recuperate for the next day.

Speaking for myself only, I simply came to the point where I could not, I MEAN could not type, hold a pen, extend my arm, drive, etc,...

There were no options re: work as my body would not cooperate. Also, the pain was overwhelmingly distracting so I really was not functioning at all. Pain is NOT TO BE IGNORED if you have TOS.

And I tell you what I LOVED my job, had just received a promotion and was assigned as the Agency Director's "expeditor" for urgent cases. That means I had powers above and beyond any other Special Agent. You cannot imagine how distraught I was for many years over this.

I have severe bi-lateral arterial and neurogenic TOS with lots of 'spin off'' issues such as RSD, Fibromyalgia....just to name a few. ALL of my tests were over-the-top positive so there was no question of my disability.

As you are reading over and over, this 'syndrome' is specific to each individual. In my case, surgery is inadvisable. I have been told the MOST I could expect is temporary pain relief with no impact regarding my disability status. I would expect to have more and more surgeries as I have a family history of scar tissue development.

So for ME, working is impossible. I have a great Pain Doc (Physiatrist), who makes living tolerable.

My advice to you is to round up as many applicable specialists, who communicate with each other. They may come up with a plan for medication or change of occupation which will work for you. If you are in a situation that involves blood clots, cervical ribs and certain other conditions, surgery may be the answer for you.

If you get to the point where you cannot work, your body will make that decision for you.

I wish you the best of luck in this early and frustrating stage of the journey.

Anne