i self referred to a nearby vascular surgeon whose secretary automatically said she knew about thoracic outlet syndrome. so she ran tests (an arterial study with an ultrasound and a chest x-ray) also a bunch of tests where i turned in certain positions and she took my pulse. she said there is no evidence that there is anything wrong with my arteries or veins. i believe i have neurogenic TOS. she had a copy of my nerve conduction test, but she didn't know how to read it. so she went off of what the dr said- that i have bilateral CTS that is moderately severe in my R hand. it also said i show clinical signs of TOS but that he could find nothing on the NC test to support it. She said she wants me to get the CTS treated and see if that works. She said that i 'might' have TOS, but i needed to have this surgery first to see if that works.
This is like the fifth doctor who has said i might have TOS. They can never tell me that i do not have it. why are they not listening to me?! My PTs are with me and they believe i have the signs and symptoms of TOS. i do not want to have CTS release if that is not the problem. i can't afford to take that much time off work for the recoveries.
Over the last couple of weeks, my hands feel like they're starting to die off. i am dropping things. it is hard to hold small things or manipulate them. it feels like my arms have no strength. i can try to open a heavy door and turn red in the face from the effort it takes. i can't lift much more than a gallon of milk and on saturday, i woke up with my middle finger stuck in a hook like position and i couldn't move it on my own. i am having so much pain in my shoulder area. it goes from right above my clavicle and down into the front of my arm pit. all of my muscles are tight and spasming on both sides. the scalenes are so tender it hurts to even touch them. the pectoralis muscles have been released by the PTs on several occasions. something is not right in that area to be causing all of these spasms and tight muscles. the other day they said my first rib was raised and not in the place it should be. on 2 occasions now when the released these 'trigger spots', my finger started twitching uncontrollably.
i took a copy of the NC test from my vascular surgeon and have been trying to look online to understand it. it is really hard to understand but from what i see, it looks like there is a latency in all of the nerves and not just the median nerve (the one that goes through the carpal tunnel). i say that because none of the numbers are very far off from the numbers where the dr says i have severe damage.
what do i need to do? do i just give up and have the CTS release surgery or should i seek another opinion from a dr who knows about nTOS? i live in zanesville, ohio. it is about an hour from ohio state university (does anyone know a good TOS dr around there?) the list has a dr, but i think he moved to SC i am thinking i might have to end up going to the cleveland clinic. or maybe i am just crazy and it is only CTS and not TOS and i am wasting my time while i desperately need to get some kind of relief??!?

i hope we can too! keep me posted in what is going on with you.

^^ by the way the doctor who put that on the NC test is the same doctor who said thoracic outlet syndrome had nothing to do with the nervous system

I think you should definately get a second opinion. I dont know who is at Cleveland Clinic but I think they have info about TOS on their website . How far are you from St. Louis? Dr. Thompson is one of the more famous TOS Dr's.there. There is also Dr. Atasoy in kentucky who is a hand Sr. but diagnoses TOS. Carpel Tunnel can cause pain in the shoulders and is easier to diagnose, but you could have both. Meanwhile keep doing PT.

Also you need to follow your instincts, I was sure I had TOS from the symptoms described on websites when all the neurosurgeons, chiropracters and pts told me I didnt have it.and that it was all do to a bulging disc. it wasnt until I found a neurologist with TOS experience who diagnosed me and sent me for the mri which showed neural edema then I got 3 opinions that I most likely did have it.Then the scalene block test came back positive. Then once I started with a good pt and getting my ribs adjusted I knew without a doubt that I did have it.

There is no sure test, but you might try to find someone who will do a scalene block and can read the nerve tests for you. TOS often doesnt show up on NCso it is not a good test for that, but I beleive it is good for showing carpel tunnel .

i googled my butt off and found a vascular surgeon (Dr. Vaccaro) at OSU in columbus which is about an hour from me who has written several medical papers and done lectures all over the country on TOS. I called them and they said i need a referral so now i'm waiting to see my regular dr. to get the referral. maybe this dr vaccaro will try the scalene block.
i am going to PT religiously. even if it only provides temporary relief, it is a blessing. theyre teaching me a lot of things about my posture and are helping control the numbness.
woke up with the worst headache today on the left side. it was coming from the base of my neck :/ so sick of taking all this ibuprofen!

Thats good news. I havent heard of him.so keep us posted about your visit with him.