ATOS Test Results -- Looking For Help w/ Follow-up Appts.
 

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.

Pixified,

That's understandable. If I can't do normal everyday things...put dishes away, get the trash together, and most importantly, pick up my daughter...that's it.

I don't have any of these symptoms/problems...yet...but it looks like I do have ATOS. If I wanted to, I could probably press a 50lb dumbell over my head without issue. I don't have any heaviness in my arms or fatigue in any way. No swollen hands, no vein prominence, no coldness and such. My main symptoms are: burning / pinching pain on the scap and in the armpit area, odd elbow pain, and pinky/finger numbness (especially when I wake up in the middle of the night).

I guess the question I have is, "Is it just a matter of time before I get to this more symptomatic point?"

If I'm reading my reports right, I'd think that the evidence of a high grade stenosis in my right subclavian artery has me on the same track as you eventually.

KY

Ok, had two additional appts. yesterday. The first, a follow-up with vascular surgeon Adam Vernadakis at Lahey Clinic and then second, a 2nd opinion with Dr. Dean M. Donahue at Mass General.

The good news: Surgery is not in the cards...at least not immediately.

I first met with Dr. Vernadakis. He had previously felt the "bruit" over my subclavian artery and had me rushing off to surgery "sooner rather than later" 2-3 weeks ago. He informed me that the test results showed everything fine with hands held down, but there was definitely a kink in the subclavian artery with hands held up. That said, blood flow was excellent and it didn't appear that there was any damage to the artery. This alone had him backtracking on the surgical option. Additionally, he felt my bruit and indicated that it didn't sound as bad this time around. All this in combination with my diminishing symptoms had him put me in a "wait and see" type mode.

Dr. Vernadakis also indicated that there was no cervical rib or boney abnormality causing the problem. In his mind, the anterior scalene muscle was acting like a "rubber band" over the subclavian artery. If we had to go surgery, he indicated I'd need one month of rest and after two months I'd be good to go. Didn't sound so bad. He also indicated that he had done this procedure "30-40 times." Not sure if this is a lot or not. One interesting tidbit: I asked him about CT guided botox to shrink the scalene muscles. Nope. Will not do it. Too dangerous he said. I thought this was odd.

A couple other things on Dr. Vernadakis. He has a little bit of a "nutty professor" type personality. It didn't make me very comfortable. A little young as well. This, combined with his quick rush to surgical judgement and now a backpeddaling, has me a little uncomfortable with him as a potential surgeon. Something I would keep in mind when talking to Dr. Donahue later.

So anyway, I left feeling a bit relieved. Still, I had Dr. Donahue to come and I felt, based on opinions here and research elsewhere, that this was THE guy to talk to so I wasn't holding my breathe.

Later in the afternoon, I met up with Dr. Donahue at Mass General. When I met him he had just come out of an 8 hour TOS surgery for a minor league baseball player. Immediately I felt "I'm in the right place." My first reaction:

* Of all the multitude of doctors I have seen over the last two years this was without a doubt the nicest, most understanding of the bunch.

What a great guy. Unlike so many, he really understands TOS and LISTENS to you. Dr. Donahue just has a great way about him and he makes you feel very comfortable. This was entirely different than Dr. Vernadakis.

A full battery of physical exams were then executed along with a discussion of my history. Dr. Donahue then went on to explain that he is NOT quick to diagnose TOS and refused to do so with me. He indicated that he had looked at the MRA that showed the subaclavian artery tightness along with all the ultrasound tests, but he wasn't sold. He doesn't think MRAs are 100% correct and wanted to pursue more exploratory tests that were unique to Mass General. I thought his attitude towards TOS was great and clearly, Dr. Donahue was going to go the "extra mile" here. Even more, it's clear that Mass General has the testing firepower to do so.

Dr. Donahue does have a hypothesis of what is going on with me. He thinks that I do have an abnormality in my scalene muscle. Apparently, it's possible that my insertion makes me predisposed to scalene muscle tightness. This is consistent with Dr. Vernadakis, BUT Dr. Donahue's explanation dug much deeper.

So, next step: A unique CT Scan that was developed by Mass General that really takes a more detailed look at the anatomy around the thoracic outlet. If his hypothesis proves correct, the next step would indeed be a botox injection into the scalene muscle. Dr. Donahue indicated that he's used this teqhnique hundreds of times and apprx. 2/3s of his patients have symptoms clear up. This approach would also allow me to use a more aggressive physical therapy approach.

And lastly, Dr. Donahue DID NOT think I needed surgery. I thought this was shocking.

So, I'm somewhat relieved with the outcomes yesterday. First, I don't feel like I'm at risk of dropping dead. 2nd, it sounds like there could be a non-surgical path here. And lastly, even if I did need to go the surgical route, I am super comfortable with Dr. Donahue. I can't stress enough how impressed I was with him.

Hope this is helpful to others.

Thanks.

KY

Just want to warn you, this is exactly the approach Dr. Donahue proposed for me when I saw him in late March. I had the CT scan the same day I saw him, since it's such a long drive for me (170 miles each way). A week later he called with preliminary results from the CT scan, and proposed the botox injection. Warned me that insurance often objects to it, but they keep trying until they get approval, but this can take weeks to even months.

Insurance did indeed refuse to approve the botox injections, got the letter within two weeks. A week or so later called the Boston office to make sure they would appeal it. Was told to fax up my letter and she would make sure the right people got it just in case they hadn't already gotten to appealing it. Sent up further info a bit later, and another, local doctor's further notes in May. So, they have had contact and reminders with me.

Last week and this week, I have spent several hours during 4 phone calls with my insurance company. DONAHUE'S OFFICE DID NOT APPEAL THE REFUSAL. THEY HAVE DONE NOTHING SINCE THE ORIGINAL REQUEST!!!!! I don't know if Donahue himself is aware of this, or has anything to do with this, or if it's just the office people. When I talked to the right one today, she started giving me this story about how long appeals take when dealing with the insurance companies until I finally shouted/wailed at her "BUT YOU DID NOTHING!!! YOU DIDN'T APPEAL!!!! I HAVE BEEN ON THE PHONE WITH THEM FOR HOURS!!! YOU DID NOTHING SINCE EARLY APRIL!!!" And she dropped that approach and just said she would try to get it settled for me by tomorrow (yeah, excuse me for not holding my breath).

I wonder if he knows that this is how his staff "handles" things, by not doing anything, and that's why it takes so long and is so hard to get approval. If HE had called in, a "Peer to Peer" call to my insurance's doctor in the first 10 days after the initial refusal, this whole thing could have been settled right then and there. Now it has to be a full-fledged appeal, records and paperwork and all. Now, on top of two and a half months lost, now it means tons of procedure and regulations and waiting until they get to it time.

So...
Do not wait and trust them to handle things. Be a pest, be persistent, deal with your insurance company yourself, don't trust that they are doing it.
The Boston office does not deal with the insurance issues. The Salem office does. So don't talk to Boston when checking up on them, call Salem (Kathy).
Since you seem to be closer than I am, if it seems to be dragging on, just make an appointment and check in with him directly.

I'm hoping he's a good doctor with bad staff, because it's kinda hard to have any faith in this whole situation, now.

Wow. Thanks for the heads up. That is incredibly annoying...especially if relief is right around the corner.

I called asap to get the CT Scan scheduled. This will be next Tuesday.

Dr. Donahue did casually mention this type of process. Ugh.

I'll have to be a pest.

Keep us posted on your progress.

KY

KY,

Just curious about a few things. What did Dr. D. have to say about the vein involvement shown on the MRA? Did he discuss any possible pec minor involvement (since the MRA showed issue with the axillary artery as well)?

I'm really happy for you that things are looking to turn out the way you were hoping. Good luck with your CT scan and keep us updated!

He did mention pec minor, but not that much. Dr. Donahue indicated that it could be a target for botox injection as well and worst case if surgery is needed, could be a minor target as well.

God knows he tries to be even in his presentation to patients to ensure that they don't get too high or low, but I read Dr Donahue to be pretty confident in his hypothesis that the abnormal scalene insertion is the major culprit. He also noted on his physical exam when pressing on my neck above the clavicle that "jeesh, you're really tight here."

KY

Well, new test result from Dr. Donahue at Mass General. He called today post CT Scan result. The findings were surprising to me. Originally, Dr Donahue had hypothesized that I had an abnormal scalene insertion. Nope. The finding:

* Elongated transverse process, on both sides, but more prominent on the right.
* Transverse process on the right seems to have fused with the first rib.

Dr Donahue suspects that this is putting the pressure on the scalene muscle which is compressing the subclavian artery and creating the symptoms.

On one hand, kind of a bummer. In reading these boards, this finding could potentially put me in a first rib removal down the road. On the other hand, it's good to finally know once and for all what the deal is after 2 years.

All that said, Dr Donahue doesn't even want to pursue the CT guided botox injection at this time. My symptoms have diminished dramatically since all the scalene stretching in April to the point where maybe I hit a 1 or 1.5 on a 1 to 10 pain scale. We're going to regroup in the fall and see where we are. Right now, surgery is not really an option. Things would have to reverse direction in a big way.

I really hope this all was a case of a) boney abnormility making me predisposed + b) excessive repetitive stress due to resistance training in the gym + c) creation of forward posture, tight anterior muscles...and now, I'm unwinding this due to stretching.

KY

Curious what led you initially to ATOS verus just regular TOS? How did you ultimately decide it was the first? What symptoms differentiate the two?

Nobody has told me specifically what I have actually. I labelled it ATOS since tests revealed that my subclavian artery is being compressed. That said, my symptoms are all neurological (pain in shoulder, upper arm), not arterial (cold hands, etc).

I'd actually gather that I'm more neurological. It's my understanding that the brachial plexus envelopes the subclavian artery, so if the artery is getting compressed, there's a good bet the nerves are as well and thus, the symptoms.

KY