Originally Posted by parbie

Hello all,


I'm new to the forum. Been reading for the past few days. I am copy pasting my story below from another thread. Trying to find more info on anyone with neurogenic TOS (and/or having cervical ribs which I know is more uncommon) who has gone or is going to soon be undergoing surgery. What approach was used? And if you didn't have the ribs removed and only a scalenectomy, why did you choose that route?

My Story:

I have bilateral cervical ribs, right one greater than the left, I just found this out recently however have been suffering from undiagnosed TOS for a year. From the research I have done, the best way to ensure that you don't have recurrence of TOS is to have the cervical and first rib resection along with scalenectomy and brachial plexus neurolysis to get rid of the scar tissue in the plexus and it should be done with the supraclavicular approach. My symptoms have been right sided until recently, I am now also having pain in my left side but not nearly as bad as my right. I have done PT, been on every medication you can think of, several trigger point injections, epidural injection, a nerve block and ablation of the medial branch nerves and have seen 12 doctors over the course of the year since I had an injury from weight lifting. Up until now my doctors were focused on my neck and the normal MRI and nobody thought to order a neck xray or CT scan until a week ago (had a CT scan showing the cervical ribs). My pain and numbness in my arm shoulder and hand were ignored until I started PT 3 months ago and then found out I have a labral tear in my right shoulder as well. I have seen 3 orthopeadic surgeons and the last one told me the tear is too small to be causing the pain and it is definitely TOS. A neurosurgeon (3rd one I have seen) ordered the CT scan. My next step is getting a scalene block to confirm my diagnosis, but I already know from my history and symptoms and physical exams that I have neurogenic TOS and am done with conservative treatment. I am also considering getting the NeoVista MRI to double confirm my diagnosis. Has anyone had this done/think it is necessary? Also, I am in New York and have only been able to find one thoracic surgeon specializing in TOS who I am definitely planning on seeing after my scalene block. But can anyone tell me if it makes sense to see a vascular surgeon since I have neurogenic TOS? Or only a thoracic or neurosurgeon? In that case, I am stuck with this one doctor, because the rest in NY are vascular. I am also willing to travel to SF and possibly LA or TX since there is a limited number of experienced thoracic surgeons in general from what I've found so far. Any input would be appreciated.