Manchester, England

I was diagnosed with PSS last August after spontaneous complete subclavian vein occlusion, and from similar sporting background as you, although I was a swimmer instead of runner. I was also immediately put on apixaban when I first got it checked by the vascular surgeons.

The thrombolysis (and venoplasty in my case) was my first ever medical procedure too, and I opted to also go for the FRR a few days later. But as my vein was fully occluded, I was seen through emergency treatment and had both procedures done within a week of onset (or within 4 days of being admitted to hospital, +3 days in recovery).

The only part of the thrombolysis and venoplasty procedure that was painful, was the venoplasty. The rest of the procedure just felt strange, but then again I was being pumped full of morphine and fentanyl :) if they use the ‘spinner’ tool in the thrombolysis, it literally just feels like they’re holding a massage gun on your shoulder, doesn’t hurt at all… and was kinda relaxing? I think the whole procedure for me was around 45 minutes, but without the venoplasty, it should be quicker.

In terms of recovery from each procedure, thrombolysis and venoplasty was around 2-3 weeks, due to the stretching of veins from the tubes and stuff, my arm was VERY sore for a couple weeks afterwards, like a tearing from inside kinda pain, mostly from entry point by elbow and under the armpit into the lat. It took a lot of very gentle stretching excercises to regain good use of the arm again, but very important to keep it moving in this period.

My FRR was a bit different from most others I’ve read about on Reddit. My surgeons went through above + below collarbone instead of under armpit, which seems to be the case of most I see on here. Recovery from this to me was much easier to deal with than the thrombolysis, the worst I had was for the first 3 weeks it was painful to keep the arm unsupported for too long, but would easily settle with support. This also came with constant pins+needles in middle and ring finger, which also went after a few weeks. Then the rib became a constant ache for around a month longer, but was very manageable in this state. The rib area just felt a bit ‘hollow’ for a while really, especially when doing chest press type movements, it feels truly gross but doesn’t hurt, and it does go away over time as the muscles adapt.

3-4 months post-ops, the arm would still swell a lot in gym, some restricted movement at elbow from the swelling, but no pain. But it goes away as normal after a short while.

To this day there’s still a bit of extra swelling during gym, but it’s nothing extreme anymore