New vTOS/Paget-Schroetter diagnosis after big DVT. Rib resection now or wait?
hey all, new here unfortunately…40m, ultrarunner, lifter, and stay-at-home dad to a 2 year old i carry around basically all day (including in a back carrier)…i feel like that should also count as lifting.
on 10/2 i was doing some very light strength training before a run (benching and deadlifting is probably what caused it) when my left arm swelled up, got super tight and vascular, and eventually turned kind of grey and cold. first ER ultrasound was negative. it kept getting worse to where it felt like a balloon about to pop so i went back monday and they found a DVT through my subclavian, axillary, and brachial veins, plus a superficial clot in my basilic. diagnosed with vTOS / Paget-Schroetter.
I got admitted, had EKOS/tPA thrombolysis monday and balloon angioplasty tuesday. there was severe narrowing where the subclavian passes between the clavicle and first rib. flow is better now and i'm home on Eliquis.
vascular surgery brought up first rib resection but wants to reassess in a couple weeks instead of scheduling it right away, and i honestly don't know how to feel about that. losing a rib and a long recovery sounds rough. but leaving the compression there and waiting to see if another clot shows up sounds worse to me, especially since the first ultrasound missed this one and I just feel like I’d be so anxious doing strength training or back carrying my son as if I’m just rolling the dice every time. I’m also not sure if this would change after a surgery, but I am also not very keen on being on blood thinners for the rest of my life and to my understanding surgery could help that.
So for anyone with vTOS who had thrombolysis/angioplasty first…
- did your surgeon push for FRR right away or wait and see? why?
- anyone skip surgery? how's that gone long term?
- if you had it, how was recovery? especially getting back to running, lifting, and picking up kids
- how long were you on blood thinners, and did surgery change that?
- anything you wish you'd asked before deciding?
Also obviously not asking reddit to make the call for me, just trying to figure out what other people went through and what i should be asking. thanks!