So I went into a vascular specialist today who did an ultrasound. Noticed reduced pulse in provocative positions. I realize that anyone off the street may have that as well and that it is a lousy predictor of ATOS - but my question is how do you differentiate true ATOS from just pulse disturbance?

Dr. Gelabert's note to my insurance company said, "Based alone on MRA showing greater than 95% compression of subclavian artery, the diagnosis of ATOS is confirmed and surgery is warranted as soon as possible."

Have you have MRA/MRV imaging done? Im sure there are more that others can add, but that was my case.

Didn't have MRA/MRV done -- but what symptoms led you to require that in the first place ?? If Doppler shows reduced pulse-- but I have only neuro TOS symptoms should I pursue the MRA and future tests ??

My "Top Five" as I've seen on here are/were:

1. Pain/weakness/fatigue in upper left arm. Cannot raise it above waist level without hand turning cold and blue. Pain worst in bicep and shoulder area.

2. Tingling and numbness in pinky and ring finger and that whole side of my hand. Worst when lying down. Mornings awful no matter how I sleep.

3. "Heavy" head. Have described myself to several docs as feeling like a bobble-head doll.

4. Neck/collarbone pain. Goes up the side of my neck to my ear.

5. Joints in hand hurt, thought for a while I was developing a severe arthritis.

However, the MRA/MRV only came about when my doc (whom I'm VERY lucky to have) got ahold of Dr. Gelabert and talked to him
about possible TOS and referring me down there. Dr. G told him to order the MRA/MRI of the brachial plexus, and the scalene block, then send him the results for a determination on whether I should come down or not. After seeing my results he wrote the note I spoke of earlier.

Not sure if that helps, but it seems as though the MRA/MRV are as close to a gold standard ATOS dx as you can get. UCLA had authorization from my insurance company in less than five minutes -- even after they said it would take five days for pre-auth.

Good luck. I know you're struggling tremendously, and as scared as I am of having surgery, my heart goes out to those of you who are left in limbo. Keep us posted, and let me know if there's anything else I can help with. I've learned a LOT about ATOS in a very short time, fortunately or unfortunately.

Confusing. Because it would seem all of those could also be caused by NTOS. I don't get the color change and have no "weakness." Cramping - yes. Tingling, yes. But I am still as strong as I can remember. Tingling and numbness isolated to just the 4th and 5th finger sound like classic NTOS ... I have that, but is that vascular?

My layman's (of course) advice to you, 343, is to see if you can get a doc to order the MRA/MRV for you. Make sure they take positional images, i.e., arm down and overhead. Those pics are VERY helpful.

Let me ask you this: when you raise your affected arm, does it immediately go numb, lose blood supply?

It doesn't - it takes about 45 seconds to a minute of really cranking it back and behind my head to get any tingling / numbness. Hyperabucted positions.



Just had the vascular guy order an MRA/MRV waiting for a date. The ultrasound I did today really showed little of value, as was previously told to me beforehand.

I wonder if the MRA/MRV will show any stenosis or compression and to what level? I would assume if they tell me "Yes there is compression..." that doesn't automatically I should rush into a surgery that yields 50/50 results. Hmm. Confused now.

"Confused" seems to be the theme of this disease. I'll tell you, though, once the ball started rolling in my case, it went FAST. Surgeon saw the years if notes from all doc, then the MRA, and was on it like wildfire. Once i said yes to surgery, which they were really saying wasnt "optional, surgical coordinator was on the phone w me and said it takes about five days to get pre-auth. She called me back in five minutes and said ins co approved it on the spot and doc was fitting me in as soon as I could get there.

My point being, maybe after some more imaging, they'll know something for certain and guide you appropriately. I went from "TOS, and especially ATOS, is SO rare that you can't possibly have it," to "You've got ATOS definitively and need surgery ASAP." it's definitely worth a shot. Good luck to you -- let us know the results.

Oh, forgot to add, they'll tell you the length of your compression as well as the degree (percentage) so don't worry about it being a vague report. If they don't, ask. But that's normal protocol.