Thanks Linda!,

Was your vascular compression on and off - or was there a constant compression?....

My arm doesnt go blue like you - my hand changes in colour (blue nail beds/red-purple colour in hand). I have temperature changes in my shoulder blade, elbow and hand.

Glad to hear surgery was a sucess for you though and that life sounds now a little more enjoyable!

Just to clarify Tracey............

My vascular symptoms come and go. I am primarily neuro TOS and those symptoms vary in intensity with activity. I have been told that I don't need TOS surgery at this time because many of my TOS symptoms improved with PT. I have continued pain because of double crush with nerve root involvement and RSD.

Everything I've read about RSD has said that vascular compression is the one definite indicator for surgery because of the risk for clots.

If you already had a clot....those symptoms don't come and go....they can't because there is a big ol clot there blocking the vein.

Hi Tracy, Sorry its taken me so long to get back to you - havent logged on in a few days...

I had extreme swelling in my arm, about double its normal size, took a couple of days to get that big. I went to the ER (it was a sunday and the only place open for me to see a doctor, here in my neck of the woods) after i just couldnt deny any longer that something was definitely really wrong. They started with an ultra sound, which showed a blockage in the shoulder. Then to confirm they immediately did an MRI, which undeniably showed the same thing, a clot in my shoulder.

I was sent to a bigger hospital in Denver that evening and early the next morning I had to have a venogram, catheter-directed thrombolysis and angioplasty. A horrible experience that I wouldnt wish on anyone. I was kept in ICU for four days on warfarin and Heparin. However, the subclavian vein kept getting pinched shut and the a clot kept re-developing, so I had to undergo two more angioplastys within the course of that next week. Finally I had to have rib resection surgery and had some of my scalene muscle removed to allow blood to flow again. Before surgery, my surgeon was concerned that the subclavian vein was damaged beyond repair, we discussed either him doing the surgery though the armpit, giving him no access to the vein to repair it or going in through the upper chest, giving him a chance to look at the vein and hopefully patch it. I decided to let him go though the chest... Unfortunately, he found the vein damaged beyond repair.

So the subclavian vein no longer allows any blood flow though it. Basically it has shriveled up and died. So all the other veins have to compensate for it - hence the distended veins in my right shoulder, chest and arms. Thankfully the other veins are doing a good, but not great, job of getting the blood out of my arm. If it continues at the pace they are working at now I should be fine, if they start to not like having to do so much work, I will need another surgery to re-route some veins in the shoulder.

The other people I have actually spoken with who have had the same thing as me - vascular TOS - we have all had slightly different symptoms. One person didnt have swelling in his arm and no prior symptoms, skipped that and just had a pulmonary embolism instead! However, most of us (the others whom I have talked to) had massive swelling in our arm, probably due to hypertrophic muscles in the upper chest due to the sports that we do.

Anyway, I was told that anytime Im working out or exserting myself the veins in my thoracic area will be more pronounced. They are getting blood and oxygen through my body just like they are supposed to do - they just have to work harder than they normally would...

I have vascular compression with mostly neurogenic TOS. My hand has doubled in size. I have those veins in my hands that are often thick and full; worse on the side with the most TOS. I keep an eye on the vascular compression. I had been measuring my wrist for swelling with the opposite thumb and index but was told to measure the bicep area before and after exercise instead. My hand doesn't swell too big except for vigorous exercise (ha, me?) or a longish walk and i was told by the surgeon to not exercise vigorously or long. makes sense. Also, having the vascular compression doesn't mean immediate surgery. I've had 2 surgeons say that I can have it if and when I'm ready and that I'm not in any great danger. I think a venogram done with your arm in multiple positions from down to raised as high as possible will show the degree of compression and if you have collateral veins. Then you and your doctor can determine what's best for you. I had thought that vascular compression means we are dealt an automatic "go to surgery" card but I have found that this is not necessarily the case. However it is of utmost importance to have your situation diax by a good surgeon.

Thanks Linda, I think that i will also need a doppler test too - how come they did the venogram as well?...did the doppler show up a problem and the venogram confirm it?

Glad to hear that the surgery has been a success for you!.

My hand/fingers change to a blue/purpleish colour but the only swelling is my little finger on the affected side and now my veins swell a bit too.

Other people who have vascular TOS seem to have much more serious swelling than me though....