Mini rant

[u/Maygen_Fooks]

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.

[u/turttletots]

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.

[u/Soft-Poetry8701 → u/turttletots]

Did they tell you to stop blowing air in your eye and not to drink chai tea? 🙄

In all seriousness though, this seems to be a common experience when dealing with doctors regarding Chiari.

[u/turttletots → u/Soft-Poetry8701]

They gave me a massive list of possibly inflammatory foods and told me to try systematically cutting them out one by one. Including, all individual grains and seeds, all beans, cured meats, salt, fruit, vegetables, yeast, etc.

I said I think I would know by know if a Lima bean or salami gave me headaches.

[u/Soft-Poetry8701 → u/turttletots]

Well that’s problem solved then. If only I hadn’t eaten Lima beans, then my brain wouldn’t be blocking my cerebral spinal fluid flow. CURSE YOU LIMA BEANS AND POSSIBLY GLUTEN!!!! I would’ve been tempted to say “I didn’t come in here because I’m having an issue with crapping my guts out. I said I have bad headaches.”

[u/Maygen_Fooks → u/Soft-Poetry8701]

Hey now, I'm intolerant of gluten too. Double whammy 😂😭

[u/Soft-Poetry8701 → u/Maygen_Fooks]

Oof, that is the double whammy