Hey so I know things dont go very well with TOS and getting a diagnosis. I was there.

After years of rock climbing, swimming, and putting on muscle mass I noticed that my right (dominant) arm was extremely heavy and there was intense pain radiating down it all the time. like dead arm constantly. I thought it was just a short term strain but it persisted and got worse when I exercised and eventually forced me to quit exercising all together. I had to completely quit all physical activities that I loved like running, swimming, and lifting, basically I gave up my entire athletic life style just to keep the pain from increasing.
The reality of my situation set in very hard. I went from doctor to doctor, telling them my symptoms and getting a blank stare and incorrect diagnosis in return.
My first round of physical therapy in summer 2014 made it worse (classic TOS) with no answers (also extremely classic)

Eventually I found a smart doctor who just happened to be a family friend who suggested TOS - i had never heard of this before but it was right on point my with bulging arm vein and the shooting nerve pain and general misery.

So in summer 2014 I received the routine tests such as an ekg which showed some slowing in my elbow but non conclusive (classic), got an ultra sound which showed no clotting and the whole array of MRI's and a venogram which showed some interesting flow results but basically inconclusive of venous TOS

went another semester not being able to even run because when I would it would feel like my heart was pounding in my shoulder - basically like blood wasnt flowing correctly through (with accompanied knife pain - literally the worst thing ive ever had to deal with) so getting my heart rate up was out the window. This symptom stumped doctors - and me.

So after a year + of misery and sadness I desperately went to Dr ying wei Lum in baltimore MD (I live in DC) who insisted that his people give me an ultrasound anddddddd drum roll please ... BLOOD CLOT

14 days later Got the rib resection and now im 28 days post op and i feel freaking great!!! for the first time in a year I can exercise - its like a whole new chance to live.

yeah so moral of the story is dont give up, if I had followed some of the advice of doctors I had seen such as 'give up' or 'do nothing' or 'make lifestyle changes' (like what just cut my arm off wtf?!?!) I would have had a pulmonary embolism at age 30.

SO good luck everyone. Dr ying wei Lum is the man for the FRRS literally perfect recovery - thank god




that was reliable or correct. going through physical therapy which just increased the pain.

How wonderful! I hope you are climbing again soon. It is so nice to hear good results. I live in a dark world so having that bit of sunshine is a great way to start my morning.

Did you get a vein bypass or did they just desolve the clot?

PLease keep us up to date on the results of your surgery and if you're able to return to climbing and such.
That's something in specific I have been very worried about.
Our stories are very similar, rock climbing, lifting, swimming, worked as a rigger and put on a Lot of muscle mass. After one particular kayaking trip my arm dislocated and the nerve symptoms have progressed to the point where instead of living on the road and running my business, I can no longer care for myself and had to move back in with my folks as an adult. Birds are nesting in my kayak. It's like a middle finger from the world.

I've heard such mixed reviews of the surgery even though I'm still pursuing a Dx, some therapists telling me it will ruin my life and some telling me it's the only answer. The initial surgeon who suggested it said I would never lift anything heavy again, and climbing was unlady like anyway..

I hope this works well for you and is an escape from the misery vortex! If nothing else you've avoided a far more miserable fate awaiting you. Yikes! Here's to you getting back to it soon and on the wall again.