What was the diagnostic tests done that helped you get the final "this is what is going on with you" from a doctor? I am at a place that I need to outline specifically what tests I want and push for them but I don't know where to start.

Here is the background. Of note, up to this point, I have been being seen at a military hospital. This is important b/c a) I have little choice in my provider and b) tests take an extremely long time to have done compared to a civilian hospital. My symptoms started several months ago. I have always had sore shoulders, most of it I attribute to my job (I am a LD nurse, which, despite poplular belief, is very physically demanding lol). I have had muscle spasms, etc. A few months ago, I reached up to massage a sore shoulder and realized I had a large (about 6 cm by 4 cm) swollen lump in my supraclavicular area. It isn't really swollen like a large lymph node, it is very soft and has no defined edges. I had been going to a chiropractor and stopped since I was afraid something happened there that caused the swelling. It took a few weeks to get in to the doctor and when I did, they were fairly dismissive. The swelling is visable to the naked eye and concerning to me. While the swelling itself is not painful my shoulder was "sore". She (reluctantly) ordered an ultrasound which took a few more weeks to have done.

I KNOW that the swelling was scanned, I watched the tech do it. But my results were weird. They never addressed the area of swelling (which my doctor says means it was fine) only mentioning a nodule on my thyroid that was of no concern. My MD was extremely dismissive this time, saying that there is nothing wrong, that it must be muscle spasms. By this time, the swelling had increased and I was in near tears in her office b/c of hte pain (NOT like me at ALL). I have a constant "pinching" feeling in my shoulder, I have said from the begining that it feels liek whatever this is is pinching a nerve. It is also causing a feeling of tightness in my neck, making me feel like I am choking. Lately it has also extended down my back, below my scapula, causing a VERY tight, can't catch my breath feeling. I have started to get swelling (although much less) on my left side as well, but that causes more "chest" type pain (although I know it isn't, it feels much like what I would expect a heart attack to feel like). That is random, comes and goes. I have had a few instances of EXTREME intense and unbearable pain that feels like I bumped my "funny bone" but only it goes from my shoulder, down the inside of my arm, and my three fingers. Fortunately, that isn't all the time, but the pain that is all the time is bad enough, and it is draining to deal with constantly.

I was insistant that something be done. I said "this thing needs to be removed". To which she responded "that isn't possible". She said something about surgery not being an option and under her breath mentioned something about TOS and said "but we aren't even going to go there". I had never heard of it before and really have not been able to find very many "stories" online. The listed symptoms I can find are vague and every site has different symptoms. But, the more I read, the more I think this could be it.

I did convince her to order a CT, once again, several weeks later it was done. The only thing on the radiology report is that there is no mass or lymphadenopathy noted. It seriously is a half sentence report. So, I get a "we can send you to PT and you can continue to pay out of pocket for chiropractic care". And that is it. No official diagnosis and a refusal to give a referral. Right now, I am going to pay out of pocket to see a civilian provider. Well, actually I am going ot see a medical resident who will take my rad tests to the civ radiologists and look over them with them. But, from the sounds of it, the u/s and ct would probably be normal with TOS anyway? Right? So, what tests should I be requesting? I am beyond frustrated. I don't think I want a TOS dx anyway since it seems there is no easy fix to this but at this point, I NEED to know. I am begining to think I am going crazy! Any thoughts or advice is greatly appreciated!!

Most likely if something obvious was the culprit it would have shown up on the tests. I hope anyway...
like - an extra cervical rib, large ligaments or abnormal bony structures?

You could have nerve compressions and /or vascular compressions/impingement. more in the link below

Oh, a simple but basic test to give more clues is the provocative head/arm potions & pulse check compare both sides. more in the link below

my MD only did one side so she knew a small bit about it but not enough and she only did one version/position.

The advanced PT guys did much better and more of the head/arm positions, but the MDs didn't want to change their notes or report on that basis. { mainly because these aren't a concrete way to diagnose and a small percentage of the normal population will have blood flow issues also with these tests.}
But it is still a possible indicator.

My chiro did these tests on my first visit after hearing all of my symtpoms, I happened to be in severe spasms at the time.

If not anomalies or spine problems have shown up on testing, I would look into the myofascial, soft tissue aspect & posture/bodywork.


Is one shoulder higher or lower than the other? most of us w/TOS have noticed that.

Did the chiro you went to only do adjustments and no other PT type modalities? like- ultrasound, low level laser, IF stim, NIMMO & upper cervical tx?
mine does all of it as needed for me.

here's the link to the useful sticky thread - it has valuable info that we've collected over the years - kind of a crash course of info & links for TOS - there's also info on testing as well as videos for self care and posture.
http://neurotalk.psychcentral.com/thread84.html

If you think it might be postural or repetitive forward arm/head caused a simple thing to try might be these - many x a day but only if no symptom or pain increase.

a firmly rolled up towel will work fine