Dear all,i am 25 yrs old.I got an upper arm DVT in left subclavian and axillary vein.they tried to clear the clot by localized thrombolayses for 3 days but it didn’t resolve at all and the vein was totally occluded.Then i took warfarin and it’s about 5 and half months .i fortunately don’t have any pain or obvious swelling,there is some change in color only.Actually I got a Doppler US few days back which showed that the vein is partially open and they gave me 3 options to choose from:

1-just stop warfarin ,but they said there is a huge risk to get thrombus again in the same place after stopping the drug.

2-stop warfarin and do a first rib resection surgery,because they think it’s probably the cause of the thrombus.

3-Continue warfarin for life.

I am doing well and actually have no obvious symptoms,so I am confused to choose the right option after this unusual condition.
I will very thankful if you give me advise..any one got the same condition ???anyone did surgery?? was there any complications??

Thank you all for all your help

My father is on Warfarin for life (he's had several leg DVTs and pulmonary embolism). He has to limit his Vitamin K intake and cannot take NSAIDs, among other things.

My vote is: 2 - stop warfarin and do a first rib resection surgery, since it’s probably the cause of the thrombus.

Your chances for full recovery are quite good in this scenario.

I don't think conservative treatment of vascular TOS is ever recommended.

I have vascular TOS and it was very bad in the beginning. It was ATOS and when the blood flow slowed down, my heart would cramp. It was not recognized in the ER which was congruent with a later statement I read in a paper by a vascular MD that observed that TOS is underdiagnosed in the ER. It was not recognized by a cardiologist either. However, I finally got a diagnosis from Dr. Hugh Gelabert MD at UCLA as well as two chiros.

I have managed without surgery, but I have done a ton of self care, study, posture improvement, stretches, chiro and (appropriate) PT. It's like a part time job, although not as time consuming as it once was.

If you choose 1, you should expect to invest time in such activities. Or in other words, I don't think choice 1 in it's current form is any choice at all.

I think your choices are:

1. Conservative care of the kind described above until you feel you have improved, confirmed by another droppler US that shows even more bloodflow. Then stop warfarin.

2. Surgery.

3. Continue warfarin.

I have never studied the pros and cons of warfarin vs. surgery, so cannot comment on that.

The thing that stands out in your post is that (a) the doppler US shows improvement and (b) that is a relatively cheap test you can do again in the future after further conservative care. Right?

P.S. Don't sleep on that side. You'll compress the area.

Nabeel, I know they gave you 3 choices...but what was the recommendation?

Chroma, have you had any clotting? I think it changes the situation drastically. I had full occlusion with my arms raised above my head but no clotting. I chose to have rib resection surgery mostly because of the neurogenic symptoms. I think I could have tried to continue managing my symptoms conservatively like you as well if the neurogenic symptoms hadn't escalated.

if you have a clot, it's pretty obvious right?

my dad clots really easily, it freaks me out. i need to read more about it.

I delayed going to the ER by a couple days and on top of that, they never gave me a d-dimer test. So I'm not entirely sure.

I definitely didn't have a venous clot as I did not get arm swelling. I did get the heart cramp and at one point my heart went NUTS for a brief period of time after which I instantly improved.

I regret that I did not get to the ER sooner.

Regarding nabeel, I still feel that if he has improved and he can get that doppler US at various points to measure progress, then he could continue with warfarin + conservative care to see how far he gets. Obviously, if he plateaus and the progress is not enough then he either has to stay on it or get the surgery. If he makes enough progress then he can get off it.

It took me 6 months of frequent conservative care to improve enough that I could start living normally again, albeit still with some symptoms.

Just my two cents.

Thank you for your advise...yes i can repeat the test while on conservative treatment but am not sure if i should stop warfarin or continue...fortunately i don't have symptoms and my arm is ok

Thank you for your post..actually there were no recomendation..as i am a doctor they told me to read articles and decide as they don't know the right decision!!

First of all thank you alllll for posting and trying to help ..i really appreciate it a lot.
actually ,although most of the surgeons and articles recommend surgery.i don't think it's the right option at the moment but i want to ask you about the complications if the surgery ,and if anyone got clot in upper arm and didn't do surgery..did anyone get reoclusion or pulmonary embolism??