Thoughts?? Recent Venous TOS Diagnosis
 

Hi Everyone, I am new to this board….
In may 2013, I was diagnosed with DVT in my left arm - blood tests, CT scans, etc revealed no true cause of the blood clot. I was put on blood thinners for 3 months then switched to baby aspirin indefinitely as a precaution. Two weeks ago, a random blood vessel burst in my finger on that same arm,which prompted me to go see my doctor. He then referred me to a vascular surgeon here in st louis (Dr Thompson) to see if maybe there was something anatomical in my veins/arm that had caused the blood clot.

Dr Thompson ordered an MRA, and I met with him this week to go over the results. He said I have venous TOS and have two options - blood thinners for the rest of my life, which reduce the risk, but not 100% of having another clot, or having surgery to remove my first rib (his recommendation).

The radiologist findings from the MRA are as follows:
-With the arms down, there is an extrinsic impression from the left 1st rib on the inferior aspect of the left subclavian vein in the left costoclavicular space that mildly narrows but does not cause occlusion. With the arms raised, there is severe symmetric bilateral stenosis of the subclavian veins at the level of the costoclavicular spaces, resulting in subtotal occlusion.

This came as a complete shock to me - I am not sure what to make of it. I don't have any pain or symptoms in my arm since the blood clot nearly a year ago (other than the blood vessel burst, which the Dr. said was unrelated to my TOS). Because of this, I am hesitant to go forward with the surgery…how do I know I really have TOS, or is the doctor just being overly aggressive (is mild narrowing normal?)? Does anyone have thoughts, or possibly a similar story? I will definitely send my MRA scans to another doctor for a second opinion - any recommendations in the St Louis area, or around Ann Arbor/Metro Detroit?

Thanks so much!!

Vtos
 

Dr. Thompson has a good reputation as a TOS surgeon. Just my opinion, but I don't think venous TOS is anything to mess around with. I would proceed with the vascular surgery (after getting additional opinions, of course - check the Dr. and PT sticky at the top of the forum). My reading of your MRA indicates severe stenosis/narrowing when your arms are raised, which spells trouble. It's not like PT or meds are going to resolve much of anything… more importantly, I would not wait until more blood clots appear. One of the wrong size or in the wrong place can do so much damage (to your arms, for example). Unfortunately, it does appear that you have VTOS bilaterally, not just on one side. So you might be looking at 2 separate surgeries if you decide to go that route. It's a mechanical problem which can be repaired surgically, on a proactive basis. Also, you have a much, much higher chance of a good recovery than those of us who have primarily neurogenic TOS, so don't be put off by the horror stories you may see here. Use the forum search function to find posts by others with VTOS who have had the surgery. Might also be helpful in formulating questions and concerns for you to go over with your docs. You can also ask permission to contact 2 or 3 of Dr. T's former VTOS patients, to get their experiences first hand. A lot of patients are more than willing to do this. Just my 2 cents' worth! Good luck to you whatever you decide to do.

Dr. Robert Thompson...
more info -
http://surgerydept.wustl.edu/tos/TOS.aspx

Thoughts?? Recent Venous TOS Diagnosis
 

Hi! I'm definitely not giving medical advice but I had a blood clot in my subclavian vein and some of the other veins in the arm. It was big. They mechanically removed the clot and put a stent in (bad idea). The vein was damaged from being compressed by a old broken collar bone issue. Bottom line is I have very low blood flow in that vein now. The flow does make other paths. I have more distended veins on my left chest. I really don't have big issues because of the vein and blood flow. What ended up happening to me was I developed nerve compression after I had the collar bone issue fixed. The nerve compression really sucks and I may have surgery to deal with that. Just my opinion - I would talk to a couple vascular doctors at large teaching hospitals to get other opinions. Ask all your questions and make the best decision. Not sure if this helps at all but you aren't alone with getting a DVT in the upper extremity from compression :)

Thanks everyone!

I had surgery for arterial TOS with Dr. Thompson and had very good results. He's considered one of the experts on this condition. It's not an easy process to go through but ultimately I think it does name sense when you're looking at vascular issues like you have. A second opinion is always a good idea to get more info (Dr. Thompson was my second opinion after seeing the chief of surgery -a vascular surgeon- at my local university hospital previously).

Did you have it bilaterally?

I responded on the other thread (the one that refers to Dr. Collins).

I have bilateral cervical ribs but only have problems on the right side which is where I had surgery.

I read somewhere that for people with Vtos, 70% on blood thinners eventually form blood clots. B

GoBlue, did you end up having surgery? Would love to hear how it went if you did and how you're doing now.