Mine just happened last week (March 2025) so this is very new for me.
I woke up one day in extreme shoulder pain. I just thought I pinched a nerve sleeping until I noticed my entire arm was swollen, red, and tingling with limited mobility.
My friends and family suggested going to a chiropractor, but my gut told me to listen to the scary Google diagnosis. I was afraid of overreacting and wasting money, but took myself to the ER. Sure enough, I was admitted for a massive clot in my subclavian vein by the artery and one in my lung as well (pulmonary embolism).
I was also diagnosed with Paget-Schroetter syndrome, a type of venous thoracic outlet syndrome (TOS), where the subclavian vein is compressed, leading to blood clot formation. Estrogen-based birth control increased my risk.
Unfortunately, the recommended treatment to reduce the long-term risk of more clots was surgery to remove my first rib. I was in disbelief. It seemed so crazy and scary, but I didn’t want to spend the rest of my life on blood thinners feeling like ticking time-bomb.
After what felt like the longest wait to find a specialist, my surgery finally took place two months later. The recovery has been incredibly painful, but it was successful, and I’m expected to make a full recovery.
Looking back, there were a few other warning signs and factors that I probably should’ve paid more attention to. TOS can be caused by repetitive movements and is more common in athletes. I often experienced shoulder pain lifting weights and numbness sleeping, not to mention neck pain due to poor posture and carrying heavy purses. I don’t know if it could have been prevented or was bound to happen due to my anatomy, but it was a wake-up call to listen to my body.
I want to spread awareness about this because it can be incredibly isolating to feel like nobody can relate to what you are going through, but support is out there. It has been a rollercoaster of emotions. I feel lucky it was caught early and wear the incisions from my missing rib as a badge of honor.
Resources
Signs and Symptoms
Questions to Ask Your Doctor
New Patient Resource Guide
