I developed a clot in my right upper arm, completely out of the blue back in august. I was treated with coumadin but was just diagnosed with Venous TOS last week. I live in south florida but have been in contact with Dr Donahue in Boston. I have heard excellent things and I am awaiting his opinion. I am willing to travel there to have the surgery, I was wondering if anyone here has done the same? He told me I should be able to return to Florida within 5 days assuming no complications. Can someone also fill me in on the follow ups post op? He mentioned a venogram a few weeks later and possible angioplasty.
any advice would be much appreciated. very hard to find someone who has gone through this and I am happy I found this forum.

Venous tos also called effort thrombosis. It is related to compression of subclavian vein. It is a different process than neurogenic tos. As the compression occurs in a different space.
In vascular world, 2 approaches have been done. Transaxillary with no vein repair. Or paraclavicular with vein lysis and repair. Later one is a bigger procedure. Here are the pros and cons. Transaxillary, only takes rib and part of the scalene out. Does not fully free the vein up. So subsequent angioplasty maybe needed . It is a smaller operation with faster recovery. Paraclavicularn only done in a few major centers in the country. Allows full decompression of vein and the vein can also be reconstructed. Down side, bigger operation longer recovery, but better long term outcome. Either treatment can be considered standard of care. Only thing to keep in mind is dont let anyone put a stent in your vein.

[dont let anyone put a stent in your vein]

Is that for TOS pts only, and for vein only vs artery?
Why?
Elderly family friends have various stents, so I am just curious.
I don't know if theirs are artery or vein though.

It is for vascular tos(ie arterial and venous). Stents are foreign body they have a limited life span.
Most patients with tos and young and healthy. Stents in veins are likely to occlude when that happens the arm swelling will be worsened and also makes subsequent surgical treatment very difficult. For vascular tos, diagnosis is straight forward and surgery should be done asap. For venous tos, it is important to get the patients surgery done as soon as you can. With time the vein will reocclude and we have well published studies that shows the longer we wait for surgery the worse the outcome is (ie arm swelling and discomfort and likely to require further interventions) hope this helps.

I also live in Florida and had my neurogenic TOS (also had arterial compression) in Boston with Dr Donahue. We drove up, but I flew home and that was a good decision. I chose a left window seat so I could prevent anyone from banging my left arm by accident. My post op was all done by phone and I took pics with my cell phone and emailed them to him. But since my surgery did not include a severe blood vessel compression component, this was acceptable to him. He has called me many times to check up on me. He is very conservative and if he suggests these follow up tests, then do them.

Hey fclegg I just had a few questions for you. Since you live so far from dr Donahue how did the consultation leading up to surgery take place? Were you already diagnosed when u scheduled surgery? And was it dr Donahue that diagnosed you with neurogenic TOS? I live about 4 hours from dr Donahue but was considering trying to see him. I had venous and arterial TOS ruled out by a vascular surgeon who said he didn't treat NTOS but said it was possible that I had that form. Which was upsetting because I went there specifically to be tested for NTOS b/c my symptoms are strictly neurological. He posted that he tested for TOS, guess I should have made sure he treated all forms before I went. That's why I ask if dr Donahue diagnosed you with neurogenic TOS. Thanks for any reply, and hope your recovery is going well.

Hi Joshuamr. Dr. Donahue diagnosed me with TOS and I don't have arterial or venous TOS. Don't hesitate to get in touch with him. He's unlike any Dr. I've dealt with as he takes his time to make sure that your questions have been answered. You'll find no shortage of Dr. Donahue fans here!

Hey eddiemaverick thanks for the response. So he diagnosed you with NTOS? I have heard nothing but wonderful things about dr Donahue, im just curious about how he schedules his long distance appointments. I have been to 100 different doctors over the last year and ruled out just about everything except NTOS. Been through months of physical therapy. I am at the point where as crazy as it sounds, if I get a NTOS diagnosis, to go in for surgery. I have been in pain long enough. I would have to travel 4 hours to get to him, although its not that far I am still working 5 days a week and have 3 young kids at home. And those long distance drives are painful. Thanks for the info and I guess from what everyone is saying maybe I can just call and speak to him before scheduling.

Yes, NTOS. You'd do best to talk to him by phone first to see how he does the long distance thing. I live in the area so for me it was obviously not an issue.

Hello! I went to Mass General to see the same vascular doctor that saw my sister 3yrs ago. She had VTOS. We both saw Dr Stephan Wickey. Dr Wickey ordered Doppler ultrasound which showed blood vessel compression, enough that Wickey said I should see Dr Donahue. My chief complaints were and are neurological. Saw Donahue same day! When blood vessels show compression, then nerve compression is a reasonable assumption, per dr D. So he suspected NTOS, but I had to glo thru phys therapy and when that failed, Botox shots and when they helped, then he concluded that NTOS was a reasonable diagnosis. He is very conservative and is choosy about whom he operates on so that success is achieved for all involved. Recovery is slow, I had LOTS of nerve scarring, he said. I will take at least a yr to recover.