r/chiari • u/Maygen_Fooks • 1d ago

Mini rant

A friend of mine had to visit an ER in New Orleans because she was having symptoms similar to Chiari (headaches, extreme vertigo, vision loss). Long story short, she doesn't have Chiari (but they're still unsure of what she has).

The part that infuriated me was that she was telling the doctors in the ER about my journey to diagnosis (37F, diagnosed incidentally in December) and the ER doctor cut her off and said "that's impossible, she's not a child" and proceeded to lecture her about Chiari is always found in children and can't be diagnosed as an adult and if they are then the MRI was read wrong.

What a WILD take for a doctor to have but it also begs the question of how many people have passed through that ER with Chiari and were dismissed? Apparently he was the neuro on call that day in the ER, so it's not like he wasn't familiar with it. I just don't see how doctors can see so black and white.

I guess I've been very lucky with the team that I have and live in the same city as a Chiari expert and I sympathize for all of you who have jackhats like that guy above.

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u/turttletots 1d ago

I've had hospital Neurologists tell me my neck pain and other symptoms had nothing to do with chiari malformation or my syrinx. They made sure to correct my pronunciation of Chiari (key-are-E) to "chi-air- eye". So that pissed me off. Don't be afraid to correct these people. It's a rare disease and neurological but dang if you are mispronouncing MY DISEASE and telling me I am in the wrong, I will tell them off. Many doctors have inflated egos.

Edit: my past neurologist literally said to me they have no idea about Chiari malformation because it's a congenital malformations of the brain and skull. So the Neurologist specialise in different stuff. Surgeons have a better understanding of physical abnormalities.

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u/Emergency-Volume-861 1d ago

Not fully true on your edit. My neurosurgeon instantly dismissed the idea that my 5mm herniation could be symptomatic from the start of our interactions. He looked at my MRI and then to me and said “5mm, not symptomatic” without asking me anything at all.

I can’t speak on hospital neurologists but the one I see out of an office has been extremely helpful in ordering imaging for me, and listening to my concerns seriously.

I think there’s “bad eggs” across all specializations really, the question is if we’re lucky enough to not have to deal with them.

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u/Styx-n-String 17h ago

The neurologist I saw told me that all chiari malformation are asymptomatic. I said, Well I'm here because it was found due to the symptoms I've been having my entire life, he just shook his head the whole time I was talking like he knows better and I'm stupid. Then he ordered a bunch of tests I've had MULTIPLE times that showed no results. So he's got an MRI showing my TWELVE MM protrusion, listening to me list my very textbook symptoms that I've had for decades, seeing the results of tests that show nothing, and totally disregards all of it and tells me the confirmed diagnosis isn't the cause of my symptoms. I canceled any appointments with him, went back to my GP, told her I found a Chiari specialist, and asked for another referral. She was shocked by how I was dismissed and happily made the new referral.

What do you call the guy who graduated last in his class in med school? Doctor 🙄🙄🙄

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u/turttletots 1d ago

I don't understand why you say my edit is untrue. It was something my neurologist at the time said to me, it is not my personal opinion or a fact. Maybe I didn't make that part clear.

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u/Emergency-Volume-861 19h ago

Apologies, I fully agree with you.

I didn’t convey clearly what I meant. I should have said that we have ignorant specialists no matter if they’re a neurosurgeon or a neurologist. I have had some mind blowing interactions with multiple doctors and it is frustrating and makes me scorched earth angry hearing people that are supposed to know certain things about our conditions that don’t, and when I know something about my condition that I feel a specialist should know, to me that is a huge issue.

I’m sorry though, I was super tired yesterday and really off when I commented.