A slight correction: the second link takes you to the long description of the surgery. The first is more of a slide show with small descriptions. You want to read the long one.

Hi Smuts,

Just wanted to check how is your recovery going? How's the pain, movement, activities?

Do you plan to do the other side too?

Wish you all the best and speedy recovery!

I'm doing fine, thanks. I have some discomfort in my upper back if I move around a lot. I mowed the yard yesterday. That didn't bother me, but sweeping the living room did a little. This should be gone soon. I don't feel anything right now.

The steristrips are off and all is sealed up. The slight swelling in the area around the incision is almost gone.

I have a venogram scheduled in two weeks. They'll look at the left side then. But the thinking is that I most likely won't have to have the left side done. The real worry is that the vein is irreparably damaged on the right. . . .

I've been walking a few miles almost every day and doing a bunch of lower body body weight exercises, pistol squats, lunges, split squats. Kind of spinning my wheels here. . . . I think I could drive, but I'll give it another week to be safe. As much as I hate the idea, I might walk to a gym to experiment with some of their machines. The hope is that some of them won't require any arm involvement. . . . Whatever I do, I will ease into it slowly.

I'll post back in mid June to report on the venogram. I have to stop warfarin again next week and go on lovenox in preparation. Oh boy. More giant bruises all over my stomach. . . .

Thx Smuts,

Sounds like you are doing really well. Hope it keeps that way and you are as new in no time.

Please do post again about the venogram. Did you do the venogram before the surgery? Did they tell you if the vein was patent. In my case, they told me the vein is damaged but it's patent (around 60% of capacity).

I don't know what it means if the vein is damaged. I can't really see any effects of that. I assume it means we have a higher risk of developing new clots.

I am going to see my surgeon in September and try do decide then regarding the surgery. Listing to you I am more confident to go for it. I have a zillion concerns about the surgery (from paralysis, pain, anaesthesia...). I would love to have your outcome.

I had a venogram and venoplasty yesterday. The did a venogram of the left side. It looks fine, so I shouldn't have to have another surgery.

The technology seems futuristist. They perform a real time x-ray with contrast die that's displayed on a giant TV. I could see most of it. You don't have to go into an MRI tube. There's simply a rectangular thing, about 2'x2' that moves around. They position it 6 inches or so from your head. I had my glasses on the entire time.

Then they did venoplasty on the right. They use the same x-ray technology. For this I received some sedation, but I was still able to watch most of it. Before the procedure they weren't sure that they'd be able to get a wire through the vein. But they managed.

They inserted a wire up my arm to well under my collar bone. Then they expand a balloon and watch the blood flow with the contrast die. They did several expansions in different spots. The procedure opened the subclavian vein up a bit, but not that much. There was less blood going to the collateral veins. The subclavian is still not in great shape, but I should now have less discoloration and swelling when exercising, I hope.

I'm not supposed to do anything vigorous for another week. They don't want the hole in the vein through which they inserted the wire opening up. . . . I didn't see that coming. I've got a big water proof bandage on the inside of my upper arm.

Today, the incision site hurts a bit and my arm is slightly swollen, enough that I notice it, but not big an blue, not even close. I suspect that my arm is just irritated from the procedure. I'll keep an eye on it.

A side note: The IR doc was surprised that they hadn't done thrombolysis in the ER. I would be in so much better shape now had I been treated properly last year.

I'm measuring and watching my arm now to see if the swelling improves. My right arm is always a little bigger than the left.

Right now, at rest, 10 cm up from the crease, and extended, my right is 36 cm and the left is 33.5. I'd expect the right to be 35 on a normal day, so the swelling isn't that bad.

But I fear that I might have a clot. If the swelling increases, I'm going in for an ultrasound tomorrow or Friday. Keeping my fingers crossed; I sure don't want to get another clot almost exactly a year from the first.

I guess it's a little risky to go scrapping around in a vein when you are off anticoagulants. I resumed Lovenox and warfarin this morning. The bruises are getting interesting.

Hi Smuts,

Just wanted to check how are you doing.

Thank you so much for sharing your story. It's rare to find ones about VTOS. Did you get a venogram before you had the surgery or was the MRI enough to diagnose and decide that surgery was needed? Also, have you heard of an IVUS?

Also, your quote above - do you mean you're worried the venogram and venoplasty could cause a clot? Why would that be? I'm thinking of getting a venogram to confirm the VTOS diagnosis... but wondering if I could do a less invasive test in its place. Thank you again for sharing.

I had an MRI at B&W which was enough to diagnose the problem the cause of the clot). The compression is clear when my arms are elevated. I have a still from the MRI on my wall. I also had a CT scan at MGH before I met with my surgeon. I don't think that one showed much, since they did it with my arms down. (I had an arms down CT before that didn't show anything.)

. . .

The swelling after the venoplasty was a little unusual. I was worried they caused a clot. It turns out I just had some bleeding, most likely. It started going down as expected in about 72 hours, the general peak of inflammation.

I wouldn't worry about a clot from a venogram. It's just a contrast injection. It's not invasive. It was one of the more pleasant imagining experiences (well apart from the stupidly crowded waiting area). If you can see the TV, it's fascinating.

Oh, I went off rat poison on July 5th, two months after surgery. My surgeon thinks that I'm no longer a clot risk. So, I was on warfarin for a week and a year. It's so nice to now be prescription free.

My hand still get discolored when I exercise. I'm hoping that the vein might continue to improve.

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My surgeon said that ideally when you do into the ER with a clot like this they would do a venogram and perform thrombolysis. They'd have a sense of the damage and they would dramatically improve the chance that the vein would be healthy.

I'm pretty sure that my residual problems are the fault of the ER. I was not given the widely recommended standard of care. This irritates me.

Three months and a couple weeks out: I'm doing great. The scar is a little sensitive. The collar of some t-shirts bothers it. And it feels a little thick around the area when I put my cheek to my shoulder. But everything else is fine.

This isn't a great picture, but you can see the scar here:



The dot above the line is where the drain was inserted.

I'm still a little cautious about shrugging movements and overhead presses. I don't feel 100%. But I've gotten back to vigorous exercise. It's really nice to be able to lift my arms above my head again. I'm out of practice, but I managed to do 12 pull ups in a set yesterday without any pain. And I've been squatting heavy without any pain in the area. I expect to be fully recovered in a couple months.