I have been diagnosed with NEUROGENIC TOS by a hand (upper extremity surgeon), and this was also confirmed by Dr. Togut, who is a TOS specialist. I do not know what to do. My neurosergeon stills says i do not have TOS because I do not have a 5th cervical rib, and the TOS does not show up on my EMG.
I have moderate to severe disc disease from C3 down to C8, and i have had a fusion of C5, C6, that only made things worse, because the discs below and above the fusion level did not handle the weight of the titanium plate, causing disc deformities and other problems. My EMG however is negative for cervical radiculopathy. The EMG does say that i have moderate to severe carpal tunnel on the left hand, and nothing showed on my right hand.

I am confused cause this pain goes all the way down both arms. The pain is better somewhat when i am sitting with my arms propped up on pillows. I can not do anything overhead, or reaching because the pain intensifies with this. The pain is in my neck, both sides, shoulder and shoulder blades (feels like a stabbing knife pain there), into my biceps, forearms and hands, there is pain in numbness in my right thumb, index, and, middle finger, with pain in the ring and pinky. My right hand has pain in all 5 fingers, most of the pain is in the ring and pinky finger on that hand. There is bad pain in the elbows, and forearms on both arms, but this is worse on left.
There is a grateing of bone on bone noise when i move my shoulders/shoulder blades. There are crunching noises in my neck. There is underarm pain on both sides, sometimes are worst than others with that. There is always pain at the area just below my clavicle bone, in my upper chest, on both sides. It hurts to palpate those areas. There is a feeling of pressure on the chest, feels like i just did a bunch of chest presses.

I am not sure if this is pectoralis minor syndrome or not. My shoulders seem to not want to stay BACK but roll forward.
I am wondering is that is a brace available for this. My both arms are always SO tired, ALL the time. IT is a struggle for me to do anything. I am so depressed over this.

I am trying to get disability but i do not know if i will get it being that the opinion of my neurosergeon is that i dont have it cause i do not have a fifth cervial rib, and the EMG does not confirm TOS. I have been in pain management for this, and i am taking Percocet, Tizanidine (at night), flexeril (day), Ibuprofen, Tramadol, and a new drug called Savella. Lyrica and Celebrex r not covered by my insurance.

I do not think my pain management doctor is going to keep treating me with drugs, because he keeps saying that living on these is not the answer and it is not fixing the root of the problem. I was advised by the two doctors that say i have TOS not to have the surgery due to the risks involved. I do not know why, but doctors don't seem to take this disease seriously. Dr. Toguts, evaluation reports says that as this disease progresses that stronger narcotics will be needed. I am depressed because I know my pain management will not want to do that, plus I don't even think he intends on treating me long term. The pain is so bad i feel like killing myself most days. Martina