Greetings, all. I have recently been diagnosed with bilateral TOS. Imaging shows compression of my arteries and veins when my arms are raised. I have nerve symptoms as well but haven't had any testing done for that yet. I have tried PT but it exacerbates my symptoms. I am contemplating surgery and have a few questions for those of you with vascular TOS:
1. From what you have learned, is surgery necessary when you have vein and arterial compression?
2. What type of surgery have you had (rib resection, scalenectomy, etc)?
3. For those of you who have had surgery, did it completely resolve the vein and artery compression? If not, was there a reason why it wasn't successful?
4. For those of you who have had successful surgery, how has the long-term outcome been? Are your veins and arteries back to normal now?
5. Have any of you lived with vascular TOS for a while without developing any serious complications (clots, permanent blood vessel damage, etc.)?
Thanks! This is all so very frustrating as you all well know. I'm trying to care for an infant (my TOS became apparent during pregnancy) and I'm just not sure what to do. Caring for her worsens my symptoms and I'm starting to feel like my only chance at taking care of her and regaining my former quality of life is to have the surgery. I'm also absolutely terrified of developing a blood clot or aneurysm