I was diagnosed with Venous TOS in April after a DVT (blood clot) was found in my subclavian vein. The clot cleared up within 2 weeks with heparin alone (confirmed via ultrasound), I was on coumadin for 3 months (even though my INR was always low), and now my vascular surgeon is saying that rib resection surgery is optional. But I am terrified that a clot will recur if I don't do something to address the cause of my original DVT.

I had mild/moderate neurogenic TOS symptoms pre-DVT, and those have increased a bit since - mainly more stiffness in the neck and shoulder, along with some tingling in my hand at times. Nothing unbearable, though. I'm afraid that surgery will only aggravate these symptoms.

Yet after months of research, I have yet to come across anyone with VTOS and DVT who has not opted for surgery. Is there anyone who has avoided surgery after a DVT? Successfully or not?

I'm also looking into physical therapy, but again, I'm afraid of aggravating things and reclotting. Has PT has helped anyone with VTOS or is it only for NTOS (as my dr. suggests)?

Where are you located? Trying PT with a TOS experienced therapist is worth a try.

I never had any clotting, but once testing revealed evidence of vascular TOS in addition to my neurogenic symptoms I decided on surgery.

Does any imaging show what might be actually causing the vein compression?
Sometimes they can see with certain tests/imaging where the problem is.

Some have had anomalies like double veins, odd variables of things wrapped around other structures, or extra growth on bones.
Some of this may show on good imaging , but most of these are found during surgery.. Another reason to be sure you have a very skilled surgeon that can handle surprises if you do go that route.

Thank you for responding!

nospam - I'm in Southern CA. I am open to PT - I probably could have avoided the DVT had I done it a while ago!

jo*mar - Nothing out of the ordinary with the tests so far - a CT and ultrasound. Both vascular surgeons I've seen have been surprisingly conservative in their approach and neither seem concerned with follow up testing, mainly because my clot cleared up quickly. I even requested an MR-V after doing more research, and one reluctantly agreed to have it done while the other insisted that it wouldn't be conclusive anyway. I've been told by both that the venous compression is not "graded" or scaled - it's either there or it isn't, and as you mentioned, only surgery can reveal the true cause.

It's interesting/alarming/confusing to me that we are all getting such different advice for treatment.

I also had a clot develop due to my TOS. I was actually told that the clot was caused due to compression of my sub clavian vein. I had the surgery June 19th at Barnes Jewish Hospital in St.Louis through The Center For Thoracic Outlet Syndrome. Dr. Robert Thompson. They removed the scalene muscles and first rib. I had a MR venogram that confirmed compression. Im still healing, and doing better every day. I was lucky enough that no vein reconstruction was needed. I was injured a year ago. Was diagnosed TOS almost 6 months later. Tried PT but nothing helped. I had surgery 1yr 4 months after my injury. The key is finding the right Dr's and be persistent. Good luck to you.

For PT, the best I have found in Southern CA is Arthur Ando and James Spousa at www.andoaston.com. They are the only one's I have found that are capable of treating TOS and avoiding surgery. If I had seen them a few years ago, I likely would have avoided surgery.

What Vascular Surgeons have you consulted?

Where in SoCal are you ? LA, Orange County, Inland Empire, San Diego?

Marc!

WOW!

Nina 987- I'm in SD and my therapist has worked with TOS patients without surgery, and like me following surgery. UCSD is a fantastic facility. Send me a note if you want more info. Having VTOS I completely understand your fears. I also had blood clots in my subclavian vein. My case did not allow the option to forgo surgery. Ive been highly impressed with my therapist and surgeon though. I have been blessed with them though this mess.

Marc,

I was diagnosed with VTOS too with compression of the subclavian vein but no clots, and surgery has been recommended. I'm in the northeast but was wondering if you had any insight through your experiences for someone considering the surgery. The "possible risk of blood clots" is a big one to weigh, as I'm sure you know...