Just in response to "no need to be on blood thinners"...am wondering if anyone out there knows if some of us are so occluded that maybe the thinners aren't gonna' work or work very well? No DR has said, but it's been over a month and my Warfarin sure is taking a long time to reach therapeutic range. I'm still out of range and gettin' real tired of having to do injections. If it's a mechanical problem that caused the clots and I haven't had surgery for it, then it makes sense I would just keep producing clots (and they have keep adding more & more thinner)?

I feel for those here who have developed clots from TOS. I also have the same problem. I have a genetic blood clotting disorder called Factor v Leiden http://en.wikipedia.org/wiki/Factor_V_Leiden and have had 2 clotting events in my arms that ended up in my lungs.

After my first PE they couldn't find the location of where the clot came from because they were looking at the legs/groin area. The slot travelled to my left lung on this occasion and could have killed me if I didn't get to hospital when I did. I was medicated on a trial for a new anticoagulant for 6 months. The doctors didnt fell I was high risk for a 2nd clot so I was taken of blood thinners.

Almost 6 years later after spending weeks driving 2 hours daily to clean out my grandparents house of 50 years of possessions I started having severe pain in my right arm. I went to the local clinic and was told to go to Emergency as I had a DVT in my right arm which originated in the subclavian vein. I was given heparin and sent home as by that time they couldn't find the clot when I was given an ultrasound. The nest day I again travelled 2 hours by car to visit my grandparents and by the time I got home i was in agony in my right lung and called the paramedics. I was rushed to hospital where they found that the clot from my arm had vian to my right lung (I could have told them this would happen). My hematologist also wasn't aware of DVT in the subclavian vein as it wasnt common. As a result of my 2nd blood clotting event I am now on anticoagulants for life. Warfarin was prescribed and for 14 months I failed to reach theraputic levels. For 12 months now I have been on daily heparin injections while I wait for a new anticoagulant to be approved. I still clot in the arm daily from movement but so far the heparin has prevented clots getting that bad that they travel to the lung.

Anticoagulants do not always prevent clots including when you are in range. The key is to know what causes the clots and not do anything to cause them. In my case any movement of my arms including self care and household cleaning can cause me to clot. It's hard to live a life without moving your arms at all.

If your not happy with any part of your treatment get a 2nd or more opinions. I have found the hematologist doesn't want to deal with me because I get DVT's in the arms so I stay with a vascular specialist. I had to pressure my regular doctor to refer me to a vascular specialist after my 2nd clot because I wasn't happy with my hematologist just medicating me with anticoagulants. He had no interest in finding out WHY I was clotting. It was only after seeing the vascular specialist was I diagnosed with TOS.

I hope my story helps someone here. We need to help each other sometimes with information because the medical profession dont always give it to us.

Just being on anticoag

Did anyone here end up having surgery for VTOS? How was your experience?

Also, what was the venogram experience like? Did you get any other tests? Was the venogram just to confirm diagnosis or will it be used on how to approach the surgery?