05/27/2026
Today is my last OT appointment at The Hale Hand Center.
A few months ago, I went to my shoulder doctor because I felt like something was wrong again. My shoulder had been hurting for a long time, but it wasn’t just my shoulder. There were other things happening too — symptoms I’ve had for years. Since my 20s! Within less than five minutes of talking to me and hearing a few of those symptoms, he immediately said, “That sounds like Thoracic Outlet Syndrome.”
Five minutes.
After years and years of trying to explain what was happening.
The frustrating part is that an OT actually brought up Thoracic Outlet Syndrome to me 11 years ago. She even told the doctor at the time that I needed to be evaluated for it, but nothing was ever done. Looking back, I had so many classic symptoms. And while I know I also have multiple other issues involving my shoulder, neck, spine, and surrounding areas, it’s hard not to think about how much pain, frustration, and loss could have potentially been reduced if someone had listened sooner.
Over the years, I’ve had doctors dismiss it, redirect it, or say it was probably something else. Then about four years ago, I brought it up again myself to another doctor and specifically asked if I could see someone for Thoracic Outlet Syndrome. Instead, I was sent for an MRI that ended up being inconclusive. Since the doctor admittedly didn’t know much about TOS, she refused to refer me to the vascular surgeon I actually needed to see for a proper evaluation.
Then suddenly this doctor listened, didn’t overcomplicate it, and simply said, “Yep, it sounds like Thoracic Outlet Syndrome. Here’s the referral.” No endless hoops. No making me prove myself first. Just listening.
When I met with the vascular surgeon, I honestly wasn’t expecting much because so many appointments feel rushed and limited. But he listened. We discussed several things, and he explained that in some cases OT can help, so we decided to try three months of OT before talking further about surgery and diagnostic testing.
Well… after only five appointments, my OT gently told me she thought maybe we only needed one or two more visits because I really wasn’t improving.
And honestly, I already knew that.
Not because I haven’t tried. I absolutely have. But my body is complicated. Certain exercises aggravate my spine and surrounding areas, and over the last two months, I’ve ended up in several major flares after sessions. There have been weeks where I could barely function afterward. Every time something would flare, she listened and adjusted things, which I appreciated so much.
What I am grateful for is that she listened. She believed me. She acknowledged that it really does appear to be Thoracic Outlet Syndrome, and she genuinely tried to help. Some of the manual work she did helped loosen fascia and scar tissue around my shoulder area, and I do appreciate that. I also think it helped tremendously having someone who understood hypermobility and EDS because it changes everything.
So today is my last OT appointment at Hand Hale, and now I wait for my follow-up with the vascular surgeon on June 24th to figure out what comes next.
I don’t really know what that next step will look like yet, but I do know this: being listened to matters. Having a doctor willing to take five minutes to truly hear a patient can change the entire course of someone’s life.
