4 ms·

I had my first real foray into the US healthcare system in 2022. I went to three orthopedic surgeons and a neurologist, and none of them diagnosed me correctly.

I had my first real foray into the US healthcare system in 2022. I went to three orthopedic surgeons and a neurologist, and none of them diagnosed me correctly. I was having nerve pain in my hands, and they all jumped on “carpal tunnel syndrome”, however none mentioned or even tested me for Thoracic Outlet Syndrome, which is what I actually have. Three doctors. One of them, who was the shoulder specialist ironically (he should have nailed the diagnosis as TOS), looked at my hand X-Rays, said there is no arthritis, then did a test on me to that I said hurt, and then diagnosed me with arthritis. I’m 27. It borders on malpractice and at the very least should be considered gross negligence. And they were all in a big hurry. I had to stop all of them on their way out of the examination room to ask my questions!

jnovek 4y ago
I’ve been a patient dealing with a chronic condition for about four years now. IMO you had a pretty good experience relative to the norm. It’s not uncommon for it to take years to get a proper diagnosis for chronic conditions.
- gymbeaux 4y ago
  It’s because I spent a tens of hours doing research. I’m sure it would take me a lot longer if I had to specialist-hop until I found someone familiar with TOS
cfu28 4y ago
That's weird, TOS is something taught to first year med students. It isn't that esoteric of a diagnosis.
- gymbeaux 4y ago
  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.
  - cfu28 4y ago
    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.
    - gymbeaux 4y ago
      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.

jnovek 4y ago

I’ve been a patient dealing with a chronic condition for about four years now. IMO you had a pretty good experience relative to the norm. It’s not uncommon for it to take years to get a proper diagnosis for chronic conditions.

gymbeaux 4y ago
It’s because I spent a tens of hours doing research. I’m sure it would take me a lot longer if I had to specialist-hop until I found someone familiar with TOS

cfu28 4y ago

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

gymbeaux 4y ago
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.
- cfu28 4y ago
  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.
  - gymbeaux 4y ago
    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.