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Comment by cfu28 | Hacker News Reader

That's weird, TOS is something taught to first year med students. It isn't that esoteric of a diagnosis.

I’ve done a lot of research on TOS and my findings are that TOS is A) very difficult to diagnose even with diagnostic imaging and B) considered much less-common than Carpal Tunnel Syndrome, Cubital Tunnel Syndrome, and Tendonitis.

I’ll add that all three ortho docs did those “provocative tests” for CTS, like bending my wrists, and NONE made my symptoms worse. This alone should have been an indicator that the nerve impingement was happening closer to the spine. Meanwhile, the provocative tests for TOS almost immediately and drastically worsened my symptoms.

Sorry about your experiences, that must have been incredibly frustrating. I guess I'm surprised that it took that many doctors to figure it out because it is taught pretty early in medical education. I remember practicing Adsons Test as a first year med student (not diagnostic in any way, but just to emphasize that TOS is taught early).

Sort of like how I would be surprised if I interviewed a developer who didn't know what an array was.

To be clear, I haven’t been formally diagnosed, but after 3 docs I give up. There’s really no point anyway unless I’m looking to get it treated surgically. Even then, people say it’s hard to get a vascular surgeon to do surgery for TOS. They really want you to exhaust physical therapy thoroughly. It’s very hard work. Way harder than programming. And it’s taken several months to see significant improvement- BUT I am improving.

None of the surgeons or neurologist did Eden’s or Adson’s or any other TOS test. I didn’t learn about TOS until the third doc, but she immediately dismissed it because “TOS is very rare” and “it would have shown on the nerve conduction study”- though the NCS wasn’t done above my elbow, and anyway studies out there say NCS only shows nerve damage, not so much nerve impingement.

I googled my symptoms for months, and only found TOS after exhausting literally every other nerve impingement disorder from the hand to the spine. Google results are very prejudiced to carpal tunnel syndrome and tendinitis.

I’d heard stories from people who would go to various doctors and say they were all quacks. I always thought “hey, these guys went to MEDICAL SCHOOL, what do you know about any of this stuff?”, but now I’m more in their camp.

Anyway… Good posture is very important fellas! Having ergonomic everything doesn’t matter if your posture is poor.

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