Hi! I have to chime in as I have had surgery for neurogenic TOS on my right side. I had surgery back in 2004 and have been symptom free for many years. The muscles had severely atrophied by the time I opted for surgery as a last resort.

The TOS on my right side was triggered by a car accident. I was lucky enough to being seen by doctors who support TOS and once they immediately suspected TOS (10 mos post MVA), the positive dx came three weeks later with a positive EMG/NCV. I look back on this period as "hell". I couldn't hold a pen to write something, I couldn't cut meat, I couldn't shake hands with clients without triggering an immediate flare. And the pain/muscle spasms were horrible.

It is imperative to be seen by someone who is knowledgeable on TOS. Since 2004, I've had the unlucky opportunity to see neurologists, neuro surgeons, physiatrists and ortho doctors for various other issues and it was hit and miss whether they believed in TOS. I'd say the orthos were the most open to TOS.

Earlier this year, I developed the typical ulnar/TOS symptoms on the other side and first saw the doctors connected with my PCP's practice. They did not support TOS and were trying to say my problems were from the neck and that C5/C6 was somehow causing ulnar symptoms??. I stayed compliant and followed their advice. After one failed spine injection, I ran back to my old physiatist who dx TOS the first time around. He evaluated and felt it was TOS. He offered to do a scalene block right then and I jumped at it to get some pain relief.

This time, TOS is likely being caused from my work environment and the fact that this arm is my dominant arm. Due to the economy, I can't quit my job or reduce my hours as I am the sole support for the family. And I have 25+ years to retirement, too. I wonder about the future and whether I'm doing enough now to prevent the worsening of the symptoms.

From my perspective of being a former TOS surgical patient and unfortunately dealing with it again, find doctors and physical therapists who are knowledgable on the subject and support TOS. As Kelly suggested, get your workstation evaluated for ergonomics. You need to take the steps now to prevent the situation from getting worse. My physiatrist felt if it is caught early enough, you take the steps to help the situation and you learn to manage the symptoms, you can prevent the TOS symptoms from getting worse. I'm hoping I can do this given my prior experience with TOS.