I will explain later on just what happened to me, but I wanted to emphasize that this is a rare injury. However, this statement must be qualified.
Most doctors who treat a patient suffering from a Jefferson Fracture will never before have seen this injury.
Most patients do not survive this injury (a 4-plc Jefferson Fracture).
If you meet me, I will probably be the only person you will EVER meet in your lifetime who has suffered this exact injury.
I was told by one neurologist that it's not that this injury is so rare, but few doctors actually see a patient with this injury because the victim usually does not survive. "They are not coming to us, the doctors. They are going to morgues," I was told.
A UCLA expert muttered, after reviewing my CT scans from the day of injury, "Not many people walk away from that one!"
Thus, it has been my own challenge over the last 3.5 years to find a doctor and/or specialist who has every dealt with someone with this injury. My physiatrist told me, when I asked, that yes, he'd had a couple of people over the last 25 years with a C1 fracture, but "not one as bad as yours."
And almost as importantly, I have no peers. I have no one I can talk to who has gone through this same injury. In fact, I have never met anyone who has experienced any fracture of the C1. I did meet a woman last week who had fractured her C2 and C3 in a riding accident, and she had had a halo on "for months."
I've never seen anyone online, in a support group, who has this injury. There is NO support group specifically for those who've suffered a Jefferson Fracture. I can visit a spinal cord injury site, but have not read any posts from anyone who experienced the same thing I did. This does lead to some feelings of isolation. When I mention to some people that I "broke my neck," some will not quite "get" the severity of my situation. They've known people who have broken their necks and gone back to bullriding or riding race horses. There's nothing, I've learned, that I can do to explain. It's not important to me that they understand.
When I asked my neurosurgeon if he'd ever seen a Jefferson Fracture before, he answered, "Of course...it is the most common of C1 fractures." But this is a sketchy answer at best. How many C1 fractures has he seen then? How many survived? But I did not explore the questions any further. I could read between the lines.
Because of this isolation, I have found friendship and support within the community of those with Arnold Chiari Malformation. I have not been diagnosed with ACM, however, I share some of the same symptoms and challenges, the neurological ones. I now help serve as a moderator at the Chiari Connection International support board. But...more about Chiari later!