[heybro]

Does ATOS always require surgery? I watched the Dr. Donahue video and it seemed to suggest that.

Saying the ATOS and VTOS are almost certain.

I had the ultrasound and my artery and veins on both sides lose blood flow when i raise my hands up.

i also get nerve symptoms (numbness) of course.

[Iris]

I lost blood flow and still do, although now very minor amount. I have neurogenic although my artery was being compressed.

Originally Posted by heybro

Does ATOS always require surgery? I watched the Dr. Donahue video and it seemed to suggest that.

Saying the ATOS and VTOS are almost certain.

I had the ultrasound and my artery and veins on both sides lose blood flow when i raise my hands up.

i also get nerve symptoms (numbness) of course.

[LiveLoveandTrust]

Originally Posted by heybro

Does ATOS always require surgery? I watched the Dr. Donahue video and it seemed to suggest that.

Saying the ATOS and VTOS are almost certain.

I had the ultrasound and my artery and veins on both sides lose blood flow when i raise my hands up.

i also get nerve symptoms (numbness) of course.

Yes, it almost always does. This is because when blood flow is restricted, you run the risk of clotting, pulmonary embolism, stroke, and gangrene. Of course, these things often take a lot of time to happen, but by the time the problem is detected there's often already a problem brewing which is why they tend to schedule you for surgery rather quickly. I was diagnosed with ATOS (as well as VTOS and NTOS) on 12/21 and had surgery on 01/02.

[heybro]

my arteries and veins go dead when raising my arms based on an ultasound. does that mean i have vtos and atos?

i also get numb fingers. does that mean ntos?

of course, the docs never specified. they were just local run of the mill vascular surgeons.

[brmr19]

heybro, I have bilateral NTOS and ATOS. I had the surgery on the left side. I continue to see improvement on the right side with therapy. My surgeon told me that there is nothing to worry with as far as clots. I continue PT and he feels that I should still see improvements. We did the surgery on the left because at the beginning of my TOS journey, there was no improvements at all in the left blood flow.

[stos2]

Have they done an MRAngiography yet? sometimes an MRA will show what is causing the blood flow to stop and sometimes only when they go inside they can see the cause like in my case, there were fibrous bands compressing and kinking my subclavian artery (left side) and bands are hard to see in imaging . Any extra muscle or tissue that is causing the compression needed to be removed as well, if therapy has not helped. And ofcourse the first rib also if that is the culprit.

In my case, the fibrous bands and the anterior and medius scalenes were more the issue than the first rib, as the MR angiogram that they did before closing me up showed a good blood flow in the subclavian artery in all positions of the arm and head. So they didn't remove the first rib on both sides (R) 2002, no issues ever and (L) 2010, some scar tissue issues that are being resolved now.

Every surgeon has their own philosophy, rib removal being the complete surgery but not always necessary, if one can live with some home exercise program to maintain the rib structure and the musculature to give the nerves and vessels enough space to work, but have less complications than rib removal can sometimes be responsible for. But if rib removal is needed, I am not against it, as I had given my surgeon permission if he felt it was necessary to remove it.

Before surgery, my pain level had built upto 9 - 10 all the time and no medications were helping. If the pain level is somewhat bearable and the vascular compression is not so much , then therapy does help some of the vascular component too along with the neural, as TOS is a neurovascular compression condition.

[heybro]

what is that MRA ?

[Jomar]

A small percentage of "normals" will have pulse loss with arms raised also.

That is an indicator only, for more testing, and of course any sx documented that might be related.

I think there can be mild, moderate & severe levels of TOS.
Sometimes moderate can be brought down to mild by expert PT and self care & time.
Took me 2.5 years but some of that was wasted time due to WC and uninformed MDs. I was only learning about TOS myself by forums like this at the time, then brought the whole list of links here when this site began.


I don't know if many qualified top TOS surgeons will operate on someone that is not in a high moderate or severe category, unless there is an obvious clear cut reason for surgery.

[nospam]

Your ultrasound already provided the info that a MRA would.

[Seeman]

Having ATOS does not guarantee you will need surgery. I was diagnosed with bilateral ATOS in the middle of 2012 w/ complete occlusion of subclavian artery bilaterally.

For me, I was completely unwilling to have surgery. Prior to developing TOS I was VERY active (5+ days per week at gym and/or playing basketball). My desire to eventually return to these activities made surgery a non-option.

Anyways, I'm currently recovering at what I consider a moderate pace. I'm back in the gym with a modified routine as well as playing some light sports. Progress is painfully slow compared to recovering from an injury. Staying positive and progressing at the pace your body allows is important.

Surgery should be a last resort. When an individual reaches that point varies from individual to individual.