Haven't been on this site for a little while, but found your post right away. I can understand your frustration and wanted to share a little about what I've learned so far (stress the "little" part). I hope I won't bore you to death - a guess a few months off has made me want to vent a little too!

Several months ago, my milder symptoms (numbness, tingling, and aching in my arms - especially the left) led me to online research of possible causes. I came upon a website that showed 3 different tests for TOS. I failed (positive) all three. Mentioned it to my doctor and he laughed a little, until I showed it to him (the white hand test really gets 'em interested). He had never heard of TOS (definitely NOT the first doctor I've talked to in that situation), but sent me to a vascular surgeon for a consult.

The vascular doc knew about it and how to test for it, but admitted he didn't have much experience treating it. He did his office tests (with the same positive results) and ordered an angiogram to test for blood flow with the arm(s) in different positions. Even his assisting staff at the procedure were blown away when I raised my arm over my head; they had never seen anything like that before - that's when I really knew how little was known about it by the medical community. 100% arterial and venous occlusion with arm abduction.

That was 2 months ago. I realize you're in Canada, but let me assure you that being in the US with an HMO may be close to just as frustrating. My case file has been sent to 5 different offices and hospitals with every one of them refusing to consult with me (due to lack of knowledge, I assume). At least they have the where-with-all to admit it. In the meanwhile, my original vascular surgeon told me that NOT having surgery was out of the question because my type of TOS is arterial and venous, thus not doing surgery could result in a blood clot and/or stroke (I'm only 38 with 5 kids - not an option for me, of course!).

He made it sound so urgent, yet even now, I'm waiting for an appointment next Wednesday with a vascular surgeon at UCI that, as far as I can tell by his online bio, doesn't do a whole lot with this condition either. So, I'm pretty sure that will lead to ANOTHER referral on to somebody else. Hopefully, eventually, I will get the referral I really need to Dr. Ballard or Dr. Ahn, specialists in this area in Southern California.

In the meanwhile, the veins in my arms are starting to look like my 3 year old painted lines on me with a purple marker. My arms ache constantly and are numb and "asleep" at lower and lower angles. I wake up with swollen and numb lower arms/hands and simple tasks are becoming difficult.

I'm a rookie, relatively-speaking, at this TOS thing. I've been diagnosed with arterial and venous TOS, but have yet to be referred to a doctor willing to help me. Still, I have 2 suggestions for you:

1. Visit the website: http://www.vascularweb.org/patients/..._Syndrome.html
It talks about the different types of TOS in the simplest terms I've found - great to show to your significant other and/or family, if necessary - heck, or even your doctor!

2. Call Dr. Richard (or Robert?) Sanders in Colorado. He has written a book about TOS and has done a few thousand surgeries (although recommends more conservative remedies first (that's a plus!)). He is willing to do a detailed telephone consultation with you and give you suggestions on what you should do next. I have his number around here somewhere, but I'm sure one of this site's great guru's has it too. If you can't locate it, let me know and I'll find it for you. He's a great resource and is actively researching the condition, so he really wants to know about your symptoms, and considering ways to treat it - hopefully avoiding surgery!

This may have already been mentioned in previous replies to your post here, so pardon me, but try this easy test: Stand in front of a mirror. Raise both of your hands over your head, forming a sort of triangle shape with your thumbs and 1st fingers. Rock your shoulders back slightly so that they are in line with your chest (the flat plane of your body), as if you were trying to squeeze sideways through a very narrow opening in a doorway, etc.

If you're like me, you don't even have to "pump" your hands a few times before you start to feel numbness, aching, tingling, and heaviness - not to mention, your more-affected hand is completely white (sometimes blue) in comparison to the other. If you were to have someone check for your pulse at this time, they'd be hard-pressed to find it - a sure indication that the blood supply to (and possibly from) your arm is blocked, it not completely occluded.

Show this to your doctor - it will certainly raise some eyebrows! Tell them you'd like an ultrasound and/or angiogram to be sure of the extent of blockage. If you have only (and I say that VERY lightly) neurogenic symptoms (numbness, pain, tingling, heaviness, weakness, etc.), you may be able to avoid the NASTY surgery and recovery by learning ways to deal with the pain (which may be much better than the debilitating surgery to release the pressure on the nerves). But, if your biggest problem is vascular, that is occlusion of the subclavian artery and/or vein, there are fewer choices for treatment. Gee, for some reason, we just can't live (well, our limbs can't, anyway) without that darn blood supply.

I hope you are able to find some answers soon - and me too for that matter. So many things in my life are in limbo waiting to find out what the next year or two have in store for me. I just try to take one day at a time and not let my thoughts about it consume me. But, honestly, every day is a struggle - and I don't even know what's going to happen yet!

Hopefully, you will find the same understanding and support on this forum as I have. It's a great feeling to know that there are people out there that know what you're talking about and what you're feeling. It's NOT all in your head, your symptoms are real. Stand up for yourself and be your own best patient's advocate. The only person who will look out for you is YOU! You go girl!

Keep us informed. I'm thinking about you!
Carrie