Hi epidEmic,
welcome and know u r not crazy!!!!!!!!!!!!! This is a strange syndrome that many many doctors have trouble diagnosing nevermind understanding. If you are considering surgery u need to have a very very good surgeon who does tos surgeries a LOT not just once or twice a year. The last thing you need is complications from a very serious surgery that if done incorrectly will cause you a lifetime of hell.

DO not get me wrong I have had surgery!! I hope that where ever you go u find what u need. It is not to be taken lightly! It helped me immensley as I had vascular tos and as it turns out the surgeon told me after that I had neurogenic as well after he did my surgery.

You need to do some research here on the surgeon...YOU need to interview HIM@! Ask questions about tos ...after you do your research...and know your stuff......and see if he knows what he is talking about...make sure he does many a year and not a few. If that's the case it may be worth your time to go to a place that will do the surgery for you who is well knowledged in tos and does many surgeries!!!

Just some thoughts to ponder!!
Ask for help anytime you need it.
This is a great group of people who are always willing to help when you need it...it may take a while for us to answer as you know we have our good and bad days, but we are here for you!! And WE GET IT!
Glad you found us....sorry you had to!
love and hugs,
Victoria