Quote:
Originally Posted by Simurgh
I am almost in the same situation as you described. Got a clot in subclavian vein November 2013. After a few months, no pain or any issues with the arm apart from slight redness at the end of day.
I still can't decide whether to do the surgery or not. Would you do the other side as well?
I suppose I am afraid of developing pain after the surgery and as I have zero pain now it's a hard decision. Btw I am still on Xalerto and will be till I decide whether or not have a surgery. I also have a lot of collaterals developed but it seems they also get compressed when I raise my hand.
My surgeon said there is no harm in waiting and that it won't affect the outcome of the surgery if I wait. I am in UK, btw.
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I had the surgery for a few reasons.
1. I wanted to be able to raise my arms above my head. This limitation is seriously constraining my weight training and is a general pain.
2. I didn't want to be on blood thinners for the rest of my life. The risk of some kind of bad car accident, fight, head injury in the next 40 years is too great. And the long term side effects of this stuff isn't that well known.
My surgeon said that having a vein as damaged as mine was a clot risk. It might throw a clot at any time. I could go off blood thinners, but it would be risky. And I didn't want to risk an embolism.
3. I wanted to prevent further damage to the subclavian vein. It might still be salvageable. If so, it puts me at a lower risk of clots. And if the vein improves, my arm won't fatigue so quickly.
My surgeon thought that it would be a very bad idea to wait. He wanted me to have the surgery as soon as possible. Waiting was just going to worsen the vein damage and the long term outcomes.
4. I also wanted to avoid suffering nerve damage. During an office visit, my surgeon detected a slight bit of weakness in my right little finger. I have trouble keeping the finger spread out, palms up. If I didn't have the surgery or waited even longer, I risked damaging my nerves. I might have ended up with a very weak hand or nerve pain.
My greatest fear in having the surgery was that I'd suffer some kind of serious nerve damage resulting in chronic pain or paralysis. The nightmare scenario is a damaged phrenic nerve. . . . But the risk is very low, depending on who is doing the surgery. My surgeon has never caused serious nerve damage in a case like mine. He does 5-6 of these operations a weak. And he comes highly recommended. In the weeks prior to surgery I had total confidence in his team and little doubt that I would be fine (though I did have a few nightmares about being dead. . . .).
The risk of serious injury is much higher if you have an inexperienced, unpracticed surgeon with a poor track record. Looking around, there are only a couple of surgeons in the US that I'd even consider. If I moved all the way across the country, say to LA, I'd still come back to Dr. Donahue at MGH to do the left side if it needed to be done. . . .
Right now, it doesn't look like the left side will need surgery. We'll know for sure after the venogram.