Folks,

Ok well I ran up to Lahey Clinic today to grab all my test results. This would include my MRA, Doppler Wave Form, and Arterial Exam. I'm going to document the results below.

What I'm looking for help with is:

1. Follow-up strategy. That is, what questions would you ask here in order to feel comfortable with a course of action?
2. Interpretation: I know you're not doctors, but I assume some of the language and findings below are familiar to you. If you have any thoughts on severity, feel free to chime in.

Here's the results:

MRA

* Focal kinking of right distal subclavian/proximal axillary artery with arms down.
* With arms elevated, there is high grade stenosis versus occlusion of the artery just distal to the point of kinking.
* Proximal subclavian veins are patent bilaterally with arms down but developed high grade stenosis with arms elevated.
* No evident arterial or venous thrombosis, aneurysm, or dissection.

Doppler

* Normal arterial flow is noted with arms in neutral position at sides.
* Obliteration of waveforms noted during Adson's maneuver with head turned to both the right and left side.
* Obliteration of waveforms during costoclavicular maneuver.
* Obliteration of waveforms noted during hyperabduction both 90 and 180 degrees.

Arterial Exam

* Normal arterial flow in the right and left upper extremeties.
* Triphasic waveforms throughout.


It would seem to me that a) I do have a pretty severe narrowing of the artery, but b) it hasn't yet created any thrombosis or worse.

Maybe this has been caught early?

It's my understanding from various readings that many with ATOS don't catch this until the severe symptoms emerge after clotting and such has taken place.

Some follow-up questions I have:

1. Is it possible that this was caught early enough to avoid surgery?
2. Could it be that through PT and such that the artery could heal on its own?
3. How severe is the narrowing? What percentage blocked vs normal?
4. Are there any additional tests that can be done to determine what exact damage has been done to the artery? Wouldn't this inform the exact procedure?
5. Most with ATOS have a cervical rib involved...don't see anything here. Are any anomolies contributing to the situation? Wouldn't knowing this help inform the exact procedure if need be?

Any other thoughts are welcome. I'm following up with the vascular surgeon at Lahey AND Dr Donaghue at Mass General next Wed. Hoping to have all ducks / questions in a row at that point.

Thanks in advance.

KY

Some things that popped into my head when reading -

What is causing the kink, if anything ?
Or is it just an anomaly with nothing that may be causing it?
Same questions for the high grade stenosis w/ arms elevated for artery & vein.
Any visible cause showing on the imaging?
Or Drs best guess/theory?

Your test results are quite similar to mine. Personally, the two questions I would be most concerned with asking are:

1) What is the arterial "kinking" and what structures are causing it (ie. rib, scalene muscles, collarbone, pec minor muscles). There are a few ways to do TOS surgery, and you want to make sure your case is taken individually. Since you have axillary involvement I would ask particularly about pec minor syndrome.

2) Should you have a venous doppler because of the bilateral vein stenosis? It looks like you had the arterial doppler but not the venous one.

Technically, ATOS is only when a clot has developed that goesto your hand/fingers. Only 1% of TOS cases ever get this. I've seen one of the top TOS surgeons who does 2-3 surgeries a week. While she said I do have arterial involvement, she would not diagnose me as having ATOS because I have not had a clot. She has been doing this for 20+ years and has only had a handful of cases that were true ATOS. TOS can come with a variety of degrees of impingement to the various structures, but I don't think any doc will call your case ATOS w/out having the actual clot.

I'm just curious since our test results are quite similar, what are your symptoms?

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.