New TOS diagnosis - need help with identifying symptoms
Question #1: Can TOS cause cramping/tensing of the shoulder & neck muscles?
Question #2: I am told pain from TOS usually presents on only 1 side of the body. Is it possible for the neck & head pain from TOS to be present on both sides equally?
Just found these forums as I am researching TOS. Someone very important to me has been having horrible pain from a car accident 10 years ago. She has been diagnosed with occipital neuralgia and third occipital neuralgia, with severe pain in the neck, as well as headaches that move around to various places on her head. She also has a constant tightening of the muscles in the trapezius area that they have been unable to relax.
She has had several rhizotomy surgeries, and they have provided some good relief in the lower areas of her neck; however, she continues to have severe pain in her upper neck (C2 area) that the doctors cannot explain, as it was believed the rhizotomy would deaden that pain.
This last week, she was able to obtain an appointment at the Mayo Clinic in Minnesota (where we live) and her new internist identified that she also has TOS (more prominent on her left side - likely due to her seat-belt in the accident). In researching TOS, we are suspecting this could be an indirect causation of the pain she still suffers from. She met with a vascular surgeon and a neurologist to discuss the possible benefits of surgery, both of which seemed to quickly dismiss the TOS as being related to her neck pain and headaches. In short, they did not want to consider surgery as they did not believe it would provide her any relief from her pain.
While her pain may not be typical of the brachial nerve compression associated with TOS, we are thinking it is possible that her TOS is causing the severe muscle cramping in her trapezius area. If that is the case, we suspect this cramping could be aggravating the third occipital nerve present in this region. If that is happening, the compression and aggravation of the third occipital nerve could account for the pain she suffers.
While the surgery sounds horrible, she wants to at least find a doctor that is knowledgable and that will take the time to consider a correlation. Our hopes are that if treatment and/or surgery to correct the TOS allows her muscles to finally relax, it will eliminate the compression of the third occipital nerve and possibly give some pain relief.
I am hoping some of you can share your personal experiences and help us determine if we may be on the right track here. What frustrates me most is that they identified clear TOS on her left side, but other than suggesting PT exercises or drugs they seem unwilling to do anything else (they did not even suggest a scalene block).
Thank you in advance for any info you can share!!!
I should also note, she had already done months of the same PT exercises they suggested without any benefit - in fact the PT was discontinued as it only produced painful flare-ups of her neck issues.