I’ve had bilateral ATN for 18 years now (since sept. 5, 1998). It was misdiagnosed for 12 years in Madison, WI, then diagnosed by my PT and my Craniosachral massage therapist after quitting my teaching job and moving to Homer, AK at the 12 year mark. Finally I had an official diagnosis by a neurologist in Anchorage at the 16 year mark, and got a mostly successful MVD done last year (after 17 years) on my right side only.
Recently, I’ve been thinking about why I was misdiagnosed for so long and I’ve come up with two probabilities.
One is that it started far before it became a known disorder and I was simply unlucky.
The second is that, although the nerves are supposed to be completely unrelated to each other, my pain has always been relatively symmetrical, but always worse on the right. For example, during the first 12 years, the pain was mostly in the first branch behind my eyes, though when it got really intense it would go into my upper teeth and lower jaw as well. I referred to the pain as “weird headaches,” because of which branch it started in and the fact that they didn’t seem to fit in any category.
During that time, I remember thinking that the pain was like a burning arrow going through my head, from one side to another. Interestingly, I’d always start on my right side and point or draw a line to my left when describing the pain. Eventually i described it like a metal frame behind my eyes, but sitting on my nose, with a certain number of concrete bricks being put on top, depending on the pressure I felt at that moment. Luckily, I worked with an amazing PT up here who helped me get the pain in control. I even had a social life again on top of working!
Then the pain moved into my teeth in a big way- I think as a result of a teeth cleaning- though I’m not sure, but again it was on both sides, with the right being worse.
strong textSo, my question is: Does anyone else have Bilateral ATN, with pain in the same branches regularly?
I started thinking, “I should be having pain in different places- like behind my eye on one side and in my teeth in the other” if they are truly unrelated. Then it occurred to me that that’s why doctors might be less willing to believe me, which made me curious about others with Bilateral ATN.
Quite frankly, if my veins and arteries can be _growing_emphasized text__into my nerve strangely on both sides, I don’t think it’s out of the question that they could also be touching in the mid-range area (my nose used to often be in pain- now just more occasionally since the MVD and work from my PT), but who knows? Mostly I’m just curious about how many of you who experience bilateral pain, experience it in the same branch at the same time.