Getting the Diagnosis

It's one thing to know what Chiari is; it's an entirely different thing to get an accurate diagnosis. It usually takes Chiari patients several years before they're correctly diagnosed as having ACM1. (This, coincidentally, roughly correlates to the number of years it takes the 49ers to realize their mistakes; and Niners fans don't lose hope. There's always, umm... next year?)

I was first unknowingly diagnosed in 2001. I'd been to several doctors about my headaches but wasn't getting anywhere. I finally had an MRI done by my PCP in order to rule out an aneuryism. The results were negative -- which was good -- but I still didn't have any answers.

I started researching different types of headaches, and came to the conclusion that mine were similar to something described as "cough headaches", brought on my coughing or straining. This insight didn't even mention Chiari, but it gave me something to go on.

About five years later, my sister-in-law Jill found a headache specialist in Sacramento, and I brought my aching head, along with my MRIs, to his office. He looked at the scans, then at the summary sheet, and after about 30 seconds said "You have Chiari Malformation."

Great! I thought... at least I know what this is. So I asked him how he found out. It was described RIGHT THERE IN THE SUMMARY SHEET. So my PCP at the time had the information all along, but didn't bother to relay it (or maybe wasn't even aware of the condition, which is probably more likely given how little people know of this thing).

The neurologist described the surgery, but because I had two young kids at home and was only experiencing headaches, I opted against it.

Another year went by, and I was beginning to have vertigo-like symptoms. By the the summer of 2008, they were so bad that just leaning my head backward to look up would make the room spin. If I ended up with a cold or coughing attack, I was better off laying in bed until it cleared up.

At this point I decided surgery was going to be necessary, so I began the search for the right doctor to have this condition taken care of, hopefully once and for all.

Coming up Next: The Search for a Doctor Begins