The Doubt.
There is a pretty good percentage of neurologist who think that Chiari Malformatio isn’t significant. They think that it is almost exclusively an incidental finding that just happens to show up on MRIs of people with crushing headaches. It’s like they hear hoofbeats, see a horse and go, eh, I think that’s just a coincidence.
So when I told the neurologist my past medical history, before I got past the part about being diagnosed with Chiari Malformation he looked and me and said, “now, was this a real Chiari?”
No, you’re right. It was really a series of unicorns and rainbows that made it look like my brain had squirted out into my neck, thereby compressing a lot of really important stuff. How silly of us to not realize. I wonder how the 3 neurologists I saw before surgery and the 3 neurosurgeons I got second and third opinions from missed the fakeness of my condition. I mean really.
It makes me angry. It comes across as a doctor asking you if you had brain surgery for fun. It comes across as an accusation of faking it. And it makes me livid. The last neurologist I saw did the same thing. As did the one before that. And until they look at my early MRIs showing the severity that my Chiari and how it messed with my brain and spinal cord, they treat me as though I made this up, as though I wanted this life, that surgery, this year of endless headaches.
In the end they all let it go, or change their mind and move on with the exam and eventually treatment. But I feel like I spend the first 20 minutes of each exam justifying the scar on my neck, justifying the choice to have this condition treated.
I have a lot of faith in doctors. I’m married to one, I am entering into a career in the health field myself. But I am tired of being condescended to. I’m tired of doctors acting as though I am ignorant of my condition because I’m not a neurologist. As though I didn’t do the research, didn’t ask for multiple opinions, didn’t play the wait and see game until I was so miserable, so uncoordinated, so incapacitated that I couldn’t function. I’m tired of the air of doubt in my symptoms.
If I had a tumor, they wouldn’t ask if it was a “real tumor.” If I had MS they wouldn’t ask if those were “real lesions.” But somehow, because my condition isn’t well known, isn’t well researched (or frankly, researched at all), there is a constant doubt to my story, to my history, to my pain.
And it makes me doubt myself. And I hate that even more
h katie….
i feel you.
i had an avm….miraculously found because i was having weird sensory attacks (i don’t know how else to describe them) and treated with radiation rather than surgery.
i’ve stopped having the yearly mri (it seems to be gone, it’s costly and i’m sick of it). and no one seems to think it was nay big deal.
i still do. i never talk about it….but it was there, it could have killed me at any second, like a bomb in my head, and the treatment sucked.
anyway….
i’m glad that you got it taken care of
As a fellow invisible illness sufferer, I understand this completely. So frustrating to be on the medical mystery tour.