Try not to worry. I am not diagnosed with tos but I have read the same things you have and yes it's scary. I have two blood clotting disorders. I have put the whole clot thing in the back of my head. The best thing you can do you have already done and that is read. You are now informed which is more than most people. Now you know what to look for :)

Went to PT today. Lady was super sweet to me, she did all the tests the doctor did but she understood that being in certain positions makes me anxious. I've had all the pain on the left but she said the left pulse doesn't drop as much as the right pulse does. And she assured me i still have a pulse in that position, i'm not dead lol but it is restricted so they're almost positive it's arterial.

Self pay for a vascular ultrasound (no insurance in this state) is $2000. So i can't do that. Scheduling it for when i fly home, but she said we can see if PT helps for 4 weeks, 3x a week to at least strengthen everything and open the area up as best we can.

All i can do is hope! She said my range of motion is great. No numbness and tingling in the arms is a good sign and i can keep positions without getting dizzy for now. Gotta work on my ergonomics and posture!

Thanks again for all the support ladies and gents :)

Glad to hear you're getting some where. So hard to be patient when you're in pain. My dads friend is a vascular surgeon in fl he told my dad since I have the extra ribs and if my pulse comes and goes I will need surgery and pt won't help. If it is just nerves pt should help a lot and help to avoid surgery. I will find out the 12th if it involves my artery. I really don't want two ribs removed. I sware since I turned thirty my body tries to get rid of all unnecessary parts......lol! Hahaha I still have my appendix! The good news they give neck massages at pt!

Thanks
 

Thanks for the kind wishes. I'm just waiting now for my insurance to approve a surgery and hoping they don't try to delay or fight it. I have no experience prior with this company so I don't know what they're likely to do. I had physical therapy also although from what I understand when you have a clot from venous TOS (aka Paget Schroetter) surgery is the normal recommendation. Your throbbing headache symptom is not one I have but some people I know with neuro TOS do get headaches. And I know people say ultrasound isn't perfect but in my case it was the first test that showed my clot. Then the venogram confirmed it. As venogram is invasive the drs don't like to do those unless they are pretty certain of a clot. So in my opinion, ultrasound is awesome! It's what they use me on for followup checkup. My only suggestion there is be sure they test your arm in different positions. Actually having the clot wasn't that scary; I had great treatment in the hospital and almost painless except that the arms get sore and prickly eventually from all the blood draws and IVs. It was actually scarier to read my medical records after it was over than to experience first-hand!

Do you think they're taking your first rib out too? Or just the cervical ribs?
Yeah i'm thinking in the end they'll have to be taken out, but logically i keep saying to myself "well i had no pulse issues for so long, if i fix my posture it should go back to normal right?" Haha i'm stubborn i suppose. Currently i'm just 100% scared of not waking up from the anesthesia. :/ That's why i'm worried about surgery or else i'd hop right on board. I hope all goes well for you! We can share our experiences, whoever gets the surgery first, let the other know how it went. And yes, PT MASSAGES. Half the pain is being so stiff, should feel awesome.

I had zero luck sleeping on my back comfortably. I had to learn how to sleep on my side with my arms at my sides. Stomach sleeping with my arms raised definitely aggravated my symptoms.

Pregnancy pillows can help you sleep on your side properly. My wife has one called a "snoogie".