Son is asymptomatic with venous TOS

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My 24-year old son was hospitalized two years ago with a blood clot near his right clavicle that had spread to his lungs. Since then he has been treated with blood thinners. About three months ago, he got a definitive diagnosis of venous TOS. His surgery to remove his top right rib is in five days with Dr Thompson in St Louis, whom we chose for his deep specialization in TOS surgery. However, two things are causing us to question if we should move forward with the surgery. The first is that my son has uncovered quite a lot of bad online reviews of Dr. Thompson, which totally contradict our personal experience of him and his reputation among top doctors. We learned from our research and consultations that other surgeons (at top hospitals like University of Chicago) might do a half dozen of these surgeries every year, whereas Dr. Thompson does 2-3 a week and it's all he does. So, trying to sort out if those posting had far more complicated cases, and / or whether it's the natural outcome that generally only disgruntled patients post on doctor review sites; the happy ones don't think about posting their experiences (not sure, just trying to sort that out). The second issue is the level of pain and the extremely long road to recovery we are reading about in this forum and others. 

The reason we wanted the surgery is to get him off blood thinners. Otherwise, he has absolutely no symptoms and lives a normal life. As a mother, the blood thinners scare me because if he has a head injury, it could be catastrophic. Beyond that, it seems like a bad idea to be on a medication for the rest of your life.

Is there anyone on this forum with a similar history: blood clots caused by a rib but treated effectively with blood thinners? Has anyone researched the long-term effects of blood thinners who could share their opinion? And, finally, are their differences in post-surgery experiences between those who have venous TOS vs arterial or neurogenic?

Thanks in advance for any guidance you can provide.

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    Hello,  I have been following this discussion because I too have VTOS with no symptoms while I am on the blood thinners.   I have tried going off the blood thinners with the symptoms returning fairly quickly (purple, swollen arm and large clot reforming in my subclavian vein.)

    I have had consultations with two surgeons who specialize in TOS / rib resection surgery as well as have spoken to a patient who had the surgery a few years ago.  

    Like others have said, it seems that the patients with venous TOS have better outcomes from surgery.   I am leaning towards surgery with Dr. Gelabert at UCLA who has done 950+ rib resections.   His approach is via under the armpit and he says he chooses this because it allows him to remove the entire first rib therefore causing less pain down the road because there is no left over rib to complicate things.  Also, the recovery from this approach seems to be easier as opposed to the supraclavicicular approach.  

    Thank you to everyone who has been posting as it helps in making this decision.  

     

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