I spent 3 1/2 hours at the hospital this afternoon, being shared between the director of cardiothoracic surgery along with one of the fellows/cardiothoracic resident docs. They confirmed the thoracic problem that the neurosurgeons TCI/The Chiari Institute were sure they found in July when I was out there.
The surprise was that today during the exam something quirky showed up which indicated vascular involvement. One doctor went and got another and took a look. They had a doppler brought in and tried that out. They confirmed that I'm in the 1-2% of people with this thoracic issue that manage to have the vascular form.
They stepped out again to call a third doctor in another department. After coming back in, they said the third doc is interested too (apparently in me as a 'subject') so they are having him do an angiogram. It's basically to make sure that nothing is physically IN my artery causing the compression.
Guess I should backtrack. If I turn my head less than an inch to the right, I lose ALL blood and oxygen supply to my left arm. The artery in my chest near my neck is being compressed, obviously severely. Apparently most with this disorder are bulky, weight-lifters, athletes, etc. In my case, being thin and lanky (and never a pro sports player) they think it's the Ehlers-Danlos Syndrome making my loose joints sag down and compress the artery (and vessels, etc in the outlet). When my head goes just that slight bit but to the left, the flow to my right arm (opposite of what is described above) is diminished, but not in any danger of losing my arm like I am the left.
The Doppler was just amazing, how absolutely instantaneous the loss of my pulse was. The sound of the heart beat in my arm filled the room, and the very second I moved my head over the length of a fingernail...sheer silence. We all just looked at each other. One surgeon said to another, "Did you get that???" They started checking all over my arm with the doppler and there was just none, anywhere. Meanwhile my head was still ever-so-slightly to the right, they're still searching, and the compression was taking its toll. My heart started pounding, heart rate skyrocketed, couldn't breathe. I didn't say anything, just sat there. They had me put my head center and WHOOSH my pulse came flooding back and so they obviously heard how insane my heart rate suddenly was. They had to do a lot of tests with the maneuvering and such but because of what the compression was doing with my heart rate, they kept having to stop and take a listen to my breathing and make sure things would improve.
Before leaving the exam room, the angiogram and CT were scheduled for this Wednesday morning at the hospital. The third doctor they called in is doing it himself. They want to get an up-close look before cutting anything. No argument here. I'm all for good looks before taking out my ribs and sections of muscle all too close to my heart and jugular and all that critical juicy stuff. Good grief.
I'm glad to have answers, and boy did TCI call it, though admittedly I hoped they were wrong since this isn't even a neuro problem, it's a cardiothoracic problem, and a rare one at that. Figures. I don't know any surgery date yet or anything, just wanted to share about the appointment today and that they're getting me in for another test in 2 days.
I was very comfortable with them, as was my friend Nicole who went with me (my Chiari neighbor who also goes to NY/TCI). They were really very nice and completely thorough.