I second Jomar

I have ATOS- but no cervical rib on either side. I did not develope a blood clot- tho I was at extreme risk of doing so. As soon as the results came out- I was instructed to limit ALL overhead activity (anything above 90 degrees) and all weight bearing activity- including push ups. You may very well have an abnormality of multiple causes- too much muscle, to thick of a first rib, too tight of a space... any number of things. From what I read of your results, I would say that you have Venous TOS as well as ATOS. Clearly you completely lose your pulse in specific positions- as did I. I have ATOS primarily, but I have VTOS involvement as well as my subclavian vein was compressed also. But again, I never developed a clot, though I was at extreme risk.
You had an arterial extam- what did this consist of? I had an ultrasound (lengthy) of both arms in all positions to view the artery, veins and moniter blood flow. This visualization was excellent and showed where, how and why there was a compression.
I suppose you could have a venogram completed as well as a further invasive artery exam, but I would suggest getting the ultrasound that I described above.
Also, as far as getting diagnosed with ATOS without a clot- that is bogus. I know the DR was an "expert" (Pixified) but it's a bogus statement that a patient doesn't have ATOS when presenting without a blood clot.
If I can be of further help, please let me know.

Jocelyn

Thanks for the quick replies.

One of my first questions as well, was "What is causing the compression?" like most of you are saying. I have to think that knowing precisely what is causing the compression will help inform a procedure. I don't think I'll be satisfied without knowing this. On my last visit, I didn't get a sense that the vascular surgeon knew the answer to this question. From the recent results, I don't think this is indicated at all.

As for venous TOS, this result was a tad surprising. I would think that a doppler specifically for venous would make a lot of sense.

Pixified...my symptoms (I believe) are all neurological:

* A burning / pinching type pain on my scap, some times mid to lower traps, and down intercoastals. (That said, I ASSUMED this was neurologic pain...could this be pain from arterial compression?)

* Elbow pain. At one point an EMG showed an ulnar neuropathy. I had severe pain on the inside part of the elbow above the cubital tunnel. What's weird is that when I feel the ulnar nerve and press, it causes no problem. When I press in the belly of the muscle around the ulnar it seems to hurt. Again, not sure if this has to to with the blood vessels vs. the ulnar nerve.

* Last two digits: Tend to go numb. Pinky especially. Constantly wake up in the middle of the night and my pinky is dead numb.

And Pixified...understanding that our results are similar, what are doctors orders for you?

Jocelyn...I had three different exams. One was the MRA, then I had an extensive ultrasound all over my upper extremeties along with blood pressure readings, then I did this exam where they put sensors on my fingers and had me move in all different positions.

It would seem odd to me that you can't be diagnosed with ATOS unless you actually clot. At that point, the horse has kinda left the barn. I'd think they'd want to catch it earlier, as in my case, before it gets to that point.

I guess one of my biggest questions is, what kind of arterial damage is there? One thing I left out was that the MRA indicated that there was the "development of a tapered 1.4 cm segment of high grade stenosis versus occlusion just distal to the point of kinking when arms are elevated." Also, I had a 1.7 cm tapering high grade stenosis of the subclavian vein.

Is this significant? Have no idea. Nothing to compare. On the spectrum of tapering here, what is mild vs. moderate vs severe?

And the other big question is, assuming you've removed the compression via stretching or PT, is there any other means besides surgery for "unnarrowing" the artery? Drugs? Other procedures that don't have someone ripping some scalene muscle out?

Thanks again all. I'm probably going to be a pain in the butt on these boards the next week.

KY

Jeesh.

I wonder if a stent might be an option??
http://www.heartsite.com/html/stent.html

I'm curious about the "stenosis versus occlusion"

Would be wonderful if they could go through the arm and stent the artery. I'd assume that something like this would only be done if they were 100% confident that the compression was non-existent at this point. The standard operating procedure seems to be a) Remove decompression via removal of cervical rib/scalenectomy, and b) Repairing the artery.

I just found this on the Washington University site concerning the axillary artery:

"A second form of arterial TOS affects the distal axillary artery, beyond the level of the first rib near the shoulder. This form results in either aneurysmal or occlusive lesions, and is a unique condition that appears to occur almost exclusively in baseball pitchers. These lesions are caused by repetitive compression and stretching of the axillary artery by the head of the humerus, as it moves forward during extremes of arm elevation and extension, as seen in the overhead pitching motion."

I find this interesting because I spent a great deal of time as a youngster in high school and college as a pitcher. Lots of stress on the arm. In addition, I have a bad feeling that the "pullup" movement as part of my training played a part here. It wasn't abnormal for me to do sets of 6 to 10 pullups with 85 lbs dangling from my waist in order to create greater resistance. And, it was a latpulldown injury that set this whole thing in motion 18 months ago.

KY

I've gotten mixed suggestions from doctors. 2/3 I've seen say i'll need to have the surgeries within the next 5 years. The last one said that if PT didn't work (it didn't, it made it worse) I would need to get the surgery before the pain got too bad that I wouldn't be able to take care of my daughter. Since it is getting to that point and my symptoms continue to get worse I am having the first side done later this summer.

The one thing all 3 agreed on was that the symptoms, not the test results, should be the motivating factor in any decisions about surgery.

Pixified,

What are your symptoms exactly? I'm guessing that your symptoms must be reaching a point where things are becoming difficult if you are electing to have the surgery later this summer.

For me, the average day has my symptoms at a reasonable level. I'd say the average pain level is between 1 and 3. That said, I'll have a flare up to 5 here and there. To me the bigger question is not what my symptoms are now, but what will they be in 3, 6, 9, 12 months? Am I putting off the inevitable? And in the meantime, will things just deteriorate while I deal with this annoying way of life? Even emotionally, it will be difficult having this thing hanging over my head.

And as for PT, well, I didn't think this was even an option for ATOS. Maybe for NTOS. I've done a lot of PT over the last 18 months. Unless somebody tells me there is a high degree of potential for success, I'm loathe to waste any more time.

It's going to be very interesting to hear what Dr Donaghue has to say. I really hope there isn't a grey area here. Hoping it's black or white...you either need this surgery relatively soon, or you don't...for a long while.

KY

My hands are swollen and go numb/pins and needles with certain activities. I get a lot of heaviness in my arms, especially if I try to do anything above 90 degrees or carry anything over 5 pounds. I get a lot of pain in my collar bone region, along the outside of my arms, and around my pecs. i also have a network of visible veins in my chest/shoulder area. It's the problem carrying things and inability to do much of anything with arms raised (including putting dishes away, doing laundry with a stackable machine) that makes me want the surgery.