Originally Posted by starfish43
I don't have ATOS myself but am curious what symptoms you had leading up to the ATOS, that led to your diagnosis? My understanding based on what little I have read is that ATOS is supposedly quite rare and most people wouldn't likely be diagnosed unless they'd had some acute event, and generally that would lead to a recommendation of surgery, straightaway. But everyone is not the same, I'm sure. I was also surprised by your statement that you are recovering because what I've read about ATOS is that there is a congenital component which presumably doesn't just go away, barring a surgery. Anyhow, I'm not suggesting I know anything about this, because like I said, I don't have it, but just curious.
My issues were initially neurogenic. Numbness, sensation loss, arm pain. I had been diagnosed with cubital tunnel syndrome in my left elbow, had surgery for that, and after starting exercising in rehab had similar issues with my right side, followed by a re-occurence of symptoms in my left arm. I decided to get a second opinion and saw an orthopedic doctor at NMH (Northwestern Memorial Hospital in Chicago), who referred me to a neurologist.
During my conversation with the neurologist on my third visit, I mentioned that the last exercise I stopped when things first started was Yoga, because my hand would fall asleep and turn white. I had also noticed recently that my hands were ALWAYS cold and very pale. He immediately decided I should be scheduled for a test in which the read the pulse in your arms during different maneuvers (i can't remember the name of the test). Anyways, that came back with a positive indication toward ATOS, and a visit was scheduled with the chief of vascular surgery at the hospital. A CT scan w/ contrast was scheduled right before my visits.
At some point before seeing Dr. Pearce and getting the CT scan, I started getting swelling in my right arm, especially noticeable in my hand. My right hand was probably 1.5x it's normal size, but I was able to stop the swelling with Aspirin.
Anyways, CT scan showed 100% occlusion of artery when my arm was elevated. The doctor would only say I had ATOS & NTOS, not VTOS as well. He never said I didn't have it, but I assume that diagnoses is reserved for situations requiring immediate intervention.
From what I understand, ATOS/VTOS is usually caused by a congenital anomaly, but not always. The only thing the doctor said I had was a very long neck, lol.
Sorry for the long post