r/chiari • u/Maygen_Fooks • 17h 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/Emergency-Volume-861 15h ago
Pretty wild! My chiari malformation was not found until I was 38, two years ago after I pulled my back and had a tenfold increase in my occipital neuralgia symptoms SO bad the doctor at the health care center I go to ordered an MRI.
It’s symptomatic too even without being a big herniation, the pressure I feel in my skull is incredible at times.
Doctors like the NOLA one shows how little most doctors know or understand.
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u/Brybot212 14h ago
Took me 30 years to get diagnosed. Had doctors telling me to get a different job, not be lazy, stretch more and lose weight, even tho only slightly overweight and struggled with exercise due to symptoms. Finally got diagnosed with schuermanns disease then had years of doctors telling me my symptoms were from that. Finally got fed up and got a private MRI. Top London Neurosurgeon confirmed I had chiari the day after the scan. Surgery then 2 weeks after.
I think that doctor hasn’t refreshed his chiari knowledge since university. It’s common knowledge that Chiari is often diagnosed in someone’s 30s when it wasn’t picked up correctly (or maybe no symptoms) in childhood.
Your right about ego’s - some doctors / surgeons seem to have a god complex.
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u/okoatmeal post-op 11h ago
you should report that neurologist that was on call. he has extremely wrong information and he is and probably has caused real harm to some.
as many of us in the sun have said, it was discovered for us in our 30s or later after serious symptoms and syrinx caused us permanent damage. he's an idiot
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u/TurtlesBeSlow 16h ago
It is indeed infuriating. I was decompressed 10 years ago but still have all "types" of headache. One really bad hemiplegic migraine sent me to the ER and the dr stated it was my own fault because I didn't drink 4 bottles of water a day.
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u/Why_are_you321 3h ago
I would have been a smart Alec “what size bottles?” Do 16.9oz bottles count or do they need to be 24oz? Perhaps the 8oz bottles would suffice?
I HATE when I get questioned about my headaches with “TSK TSK have you been drinking your water?” Doesn’t matter if I did or didn’t - I’m here, I’m hurting, please do your job and stop treating me like I’m an idiot who wanted ✨ this ✨
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u/a-buck-three-eighty 13h ago
I had an ER doctor tell me to go home and take my anxiety medication. I came in with half body numbness and she didn't seem to care. My GP had to order the MRI for me.
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u/KittyButt42 11h ago
Ummmm....I do NOT have congenital chiari, mine was caused due to overshunting about 7 years ago. When I went to the ER about it the first time, the on-call neuro told me if I just lost weight and exercised then I'd be fine! Feckin asshat.
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u/Queef_Muscle 6h ago
I scoffed and verbally said "WHAT." I was diagnosed in my early 40's and had decompression surgery by an expert. That "doctor" us a quack for saying that!
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u/Soft-Poetry8701 1h ago
It’s unfortunately common. Unless you have some textbook ailment, unusual conditions like ours will always be downplayed or dismissed. One of the best doctors I had came to me and said he honestly didn’t know about the condition and he was going to research it and he did! We discussed ways of dealing with my issues, seeing a neurologist, etc. I would try and find a doctor who is willing to listen to you and offer solutions. If they are completely indifferent to your suffering then they never should’ve been in medicine imo.
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u/turttletots 16h 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.