As part of Vascular Disease Awareness Month, I want to grab your attention for a minute to discuss a rare condition that has changed my life, in the hope that it’ll help others out there know what signs and symptoms to look out for should the same happen to them 🔎

🩸VENOUS THORACIC OUTLET SYNDROME🩸”is a compressed subclavian vein. Your subclavian vein carries blood from your arm to your heart 🫀 If you have VTOS, you may have arm swelling, discoloration or heaviness. Treatment usually includes medications to dissolve blood clots. If needed, you may also have surgery. In VTOS, you have a squeezed (compressed) vein in the thoracic outlet. People with VTOS often have arm soreness, swelling or discoloration. Another name for VTOS is Paget-Schroetter syndrome (PSS).”

Yup. I am one of the lucky blighters that has this invisible illness (except when it not so invisibly changes the colour of my hand and forearm). Due to the abnormalities in my neck, I am currently awaiting surgery to remove the cervical rib that shouldn’t be in there and resect my scalene muscles, hopefully, freeing the compression of my subclavian vein and artery and, ultimately, getting back to the person I was before this all started🤞

For over 3 years now, alongside the complications of hEDS, I have lived with this problem. 3 years I wish I could get back. 3 years filled with tears, silence, pretending all is well, carrying on regardless, adjusting my life, gobbling meds like sweets, having physio, making sure not to do too much or too little, and generally…having no clue whether to be scared or suck it up? But no day has been free of pain or discomfort. And because I initially spent so long being confused by the unusual set of symptoms, I want to highlight this problem today. By doing this, it might help others reach an understanding, stay strong and receive intervention faster than I did. I nearly gave up entirely because I had no hope or knowledge of what was happening to me, so I’ll do anything I can to try and prevent someone else from going through the same disconcerting experience.

Don’t assume that because something is rare that it won’t happen to you or somebody you know. Trust me, I never saw this coming. I lost so much of my late twenties to this vascular issue and would do anything to turn the clock back. I’d take advantage of every opportunity I pushed aside, knowing it would inevitably be rudely interrupted by this horrible condition. I can’t do that, though. Therefore, my second choice is to raise awareness.

So if you notice anything unusual like this happening with your arm and hand, shoulder and neck, check out “Thoracic Outlet Syndrome” and its 3 subtypes. The venous one can be read about in more detail here.

Take care of your bodies and lives, guys. You only get one. ❤