Originally Posted by kellysf

After I had posted, I read through some of your earlier posts and saw that quite a bit of time had passed since your surgery. It is, indeed, very frustrating. I would go back in a heartbeat to my pre-surgery self. But who knows, maybe I would have worsened without surgery, too.

The one thing I do feel certain of is the fact that neurogenic TOS is very poorly understood. The notion of compression and freeing up space just seems to be ineffective in too many cases to be cast as a real solution.

It's been ten years for me now since this journey began and eight years since my surgery. I have a few days a month where I can take a 15-20 minute walk or take a drive. Today was one of those days and I was very thankful for it. Otherwise, my life is very small and contained. I don't think the surgeons have a good idea how debilitating this condition is. I'm lucky to have a very supportive partner and children who fill my life with a great deal of joy. I can't imagine how hard this would be if I were going through it alone or with someone who didn't understand.

I wish you the best.

Kelly

PS I forgot to mention that I do have intermittent facial numbness and pain in my left ear, lower jaw and cheekbone.