I have not posted in a few months, but wanted to give an update on my post-surgery progress, as most with a positive outcome cease to post...and I want to put a spot of hope out there.

I suffered with TOS for 6 years before diagnosis, then went on for over another year waiting for the right time for surgery (military moves and lack of immediate family nearby meant I had to time it right). I ended up seeing Dr. Jason Lee at Stanford University and did the Edgelow protocol before deciding to go ahead with surgery. Had surgery Jan 10, 2012. Post surgery I had a lymphatic leak that put me in the hospital for a week with a chest tube, and that set me back a bit.

I began physical therapy at the end of January and felt so very down. Years of nerve damage left my scapula muscles severely atrophied, and as a result I had shoulder impingement. My scapula muscles were no longer strong enough to pull my upper arm down when I raised my arms. I couldn't reach behind my back anymore, and even after a month of therapy it was like one step forward, two steps back. After two months of attempting to resolve the shoulder problems in therapy, I had my local doc go ahead and give me a cortisone shot to the shoulder; and a week after that I finally started progressing. I was able to do more strengthening exercises, and that has been key in getting those scaps strong and stable. My shoulders are still not perfect (ie, I would hurt myself if I tried to swing a tennis racket) but I have no pain performing daily activities, and would be very okay if this was the best I ever got.

The most wonderful part of all this is....I have zero pain or numbness in my arm anymore! I drove 2,000 miles a few weeks ago without any pain...a feat that would have not been possible before surgery...heck I couldn't drive 40 miles before surgery without being in tears! This was not an easy recovery, however. Nerve regeneration and healing is SLOW. Until about the three month out mark, I had pain in my arm and shoulder that would seem to be in different areas each day. I had to take neurontin for the pain, and I was fearful that the surgery was a failure. But my surgeon assured me that an accurate outcome could not be ascertained until at least the three month mark...possibly longer with my complications. He was right, and when I turned that corner, it was amazing.

I can now look back and get a good sense of just how much pain I was in all those years. TOS pain literally takes over your life, and the slow progression can make it difficult to see just how much. Being out the other side now, it's painfully apparent how bad I was. I know there is a chance for scarring and a return of symptoms in the future. I heal really well and have had other surgeries from which I healed with minimal scarring...the amount of scarring can be genetic. Also, my physical therapist worked hard to keep the area mobile and help break up scar tissue as we went along. If you choose surgery, a commitment to therapy for the long hall is critical.

Anyhow, I just wanted to throw out my positive outcome for those that come looking for the surgical experiences of others. I'm over the moon happy that I had the surgery, and will not hesitate to have surgery on the other side when the time comes, as I have TOS on the right as well *sigh* (41 years old, rib resection/scalenectomy).