i see that you hail from IL. you might want to use the 'advanced search' function (right underneath the search bar in the upper righthand portion of your screen, which you're probably familiar with already since you've been on the RSD forum, jenny...) to look for threads by a fellow poster from that state named beth. beth is extremely knowledgeable, carries (unfortunately!) both the TOS and the RSD dx's and she may very well be able to recommend a good TOS savvy neuro for you, or a PM doc.

either one will know the appropriate diagnostic tests to run in order to start the process of "ruling out" some of these other disorders you've mentioned. (in addition to reinterpreting the test results and surgical reports, etc., you've already got in hand, that is. no need to reinvent the wheel, if they are current enough!)

i would start there. maybe send beth a PM and ask her for a referral to a decent TOS doc in IL. but do NOT try to dx yourself, jenny. TOS is extremely difficult to dx. try not to be too hard on your doc(s) either, for that reason. it is not an orthopedic problem, for one thing... and like di says, most doctors go their entire practice in medicine without seeing a single case of TOS, let alone tx'ing one. and then there's the so-called medical "controversy" surrounding TOS and, to some extent RSD, for that matter. you've got to watch out for the 'non-believer' docs. they suck.

i will say, from what you've shared with us that TOS does sound like a distinct possibility. and i am very sorry to say that, believe me. whether the torn rotator cuff, impingement syndrome, cervical ridiculopathy, frozen shoulder, RSD, etc. are co-morbid dx's or misdiagnoses, of course i cannot say. we are none of us doctors here and we cannot give you medical advice.

just the benefit of our experience and some of that painful indeed. many of us come here having had unnecessary cervical spine fusions, carpal- and/or cubital-tunnel releases, etc. only to find TOS was the culprit all the while and that we now need tx for that monster. but it is also NOT uncommon for a TOS'er to suffer from what is known as double- or even triple-crush... or to have BOTH cervical syndrome and TOS. or be a double winner like beth and to have both TOS and RSD. and the hitz just keep right on comin'...

i'm sure you know to use the stickys up top to access links to medical literature, info re drs and PT's, etc., and the search bar to enter just about any key word you can think of re TOS to find old(er) threads and posts that way.

if a trip to denver is a possiblity for you, i would definitely recommend that. you could cut through a lot of nonsense by simply flying to what we refer to here as "TOS mecca" and grabbing a consult with any one of the 3 TOS specialists practicing in that fine city: annest, brantigan and sanders. or, hell, see all three of them while you're at it!

johannakat's recent thread entitled "how i chose my surgeon" (i'm NOT sugggesting you need more surgery, please don't get the wrong idea, jenny - i'm just pointing you to ms. smartypants' thread) is chocabloc full of info on the terrible trio in the mile-high city. it's up in the DR's and PT sticky or use the advanced search to find it...

i'm so sorry for what you've had to go through to-date to find some answers. speaking from personal experience i can sure relate to your story, as i'm sure a lot of us here can, jenny. if TOS is what has been causing your pain and other sx all this time, the fact that it has been aggravated by all of this frustration and getting the wrong type of medical tx based on inaccurate dx's is just so... well, unnecessary to my mind. i really, really hope that is something which will change in the near future as public awareness is raised. because we have enough to deal with just trying to get better! am i right? i'm right, aren't i? who's with me here?!?!?!?!

welcome home, jenny. pull up a chair. i have a feeling you've already earned your seat.

alison
"Be Brave"