BTW, I would like to thank johannakat for sharing her BP/TOS diagnostic journey. I hope that she is able to get some relief from her symptoms, and that her surgeon treats her like he would any other patient, so that she can hold on to some form of "quality" in her life, so that her family, kids, etc. don't have to watch her suffer long-term (yes, I know BP compressions don't kill).

Lastly, for all those that are new to this "journey", the "moral" of JK's BP journey, is that all of these docs have a "comfort zone" as to how they diagnose BP injury/damage. If one doctor suggests that you don't have anything wrong with you, because they can't find it, doesn't mean that that journey for the truth should end. We are all not crazy, hysterical, malingering, weenies.

The brachial plexus, especially the lower trunk (C8/T1) is not easy to image. This does not mean that nothing can ever go wrong there, no matter how "rare" someone says any BP compression is.

The point is, that in other compressions, and their workup/diagnostics, there is more standardization to ruling in/out problems. The spine is one example. Spinal diagnostics are pretty much "accepted" [now] by the average doctor for correlating patient symptoms to pathology on studies. Most spinal patients, who have real symptmatic pathology, can find consensus about the diagnosis, because of this "standardization" of workup. While we may see a "divergence" in thought as what to do next, acceptance of the diagnosis helps get the patient to some form of appropriate treatment, sooner, rather than later.

At one time, spinal problems and their workups were discouraged unless you had been obviously paralyzed in an accident [generally speaking]. With the advent of more accurate, less invasive imaging technology [MRI] more people who were suffering from spinal problems that could be corrected/improved, surgical or otherwise, got a chance.

Their spinal problems had existed in the absence of adequate imaging technology, and pretending they didn't exist, because they could not be easily identified, didn't change the course of their suffering/progression. I am thinking of some cliche (tree falling in a forest). BP imaging/diagnostics seems to be following this pattern.

Doctors are also in business to make money, and making money in medicine isn't easy anymore. If you are complicated, have overlapping, "symptomatic" conditions (ie, BP/CSpine), or have a long-standing injury, with a low likelihood of symptom reversal (cure), they may not want you messing up their "success" statistics, and point you in another direction.

Does that mean that you don't have a real problem? Of course not, it means that you need to keep looking for the doctor/diagnostician that can/will help get to the truth, whatever that truth may be, without bias towards gender, lifestyle, and/or profession.

"Appropriate diagnosis/treatment" depends on the location/type of BP injury (uppper, middle, lower plexus; vascular, veinous, nerve, and/or neurovascular entrapments). No one BP/TOS patient is the same.

I am always surprised at the resistance to understand that a BP compression, can present so uniquely in any patient, depending on the sum of their lives, from residual/cummulative trauma (acceleration/deccelaration accidents), sports, recreational activity/hobby, profession, to that "last straw" that set off full blown BP symptoms/nerve dysfunction.

Hopefully, one day, there will be less emotion, and more science/standardization to diagnosing BP compression(s), and that we won't have to wait until we have reached that "point of no return", to get a "slam-dunk" diagnosis from the medical community.

I am talking about those "leaps of faith" where we "kinda" know what is going on (MRN, MRI/MRA UCLA), but won't know until we get in there.

This is the very problem with lack of BP dx standardization. One can be "abnormal", but not know what that means, depending on available diagnostics, and who had done them, and how they correlate to the patient symptoms (motor, sensory nerve dysfunction, atrophy/muscle wasting, vascular/veinous sx's, or all of the above).

One can have spent a boatload on the UCLA study, only to have it go ignored when seeking another opinion [from either an ordinary doc, or TOS specialist], and then be asked to spend more [time, money] getting the "diagnostic" that the next specialist has a "comfort level" or financial interest in.

With enough time, we may then have to make hard choices due to our own financial limitations [cost/benefit ratio], and TOS specialists may also hold that against us, since "it couldn't be so bad" if we wont bankrupt our family in search of a solution. Not an easy road.

I couldn't afford Filler especially since he would not "cap" his fees (am self-employed). I could go in thinking I would have a five hour surgery, and come out eight hours later, owing him more money, because his study [MRN] didn't necessarily "show" the cause of the compression, just that there is one. My kids WILL go to college instead.

Now, I am certain that there are readers out there, thinking, "then, you can't be that bad"...well, I am from a mind-set that one doesn't take down everyone with them [especially family], no matter how "dire" the problem or pain. Again, another example of how our personal ethics/morals affects our medical decision making, as well as tolerance to pain/physical dysfunction.

There are just too many vital structures [within the BP] that can be made worse if the surgeon doesn't have a complete understanding as to cause. By the time many of us get our dx, we are "out" of leaps.

For those that have had quick dx/treatment from whomever and are cured, god bless. Treasure that gift.

As always, this is only my "take on things" [from my own experience], and I am not here to start a fight.