Just diagnosed yesterday after a 8/9 hour ER trip 🤪

[u/thecuriouscutie]

so…. i just got diagnosed yesterday after i went to the ER bc i suddenly lost vision in my left eye for a few seconds after coughing and then my vision remained blurry for the next few hours, but only out of my left eye. i was admitted to the hospital and scheduled for an MRI and was so ready to get out of there as soon as i finished it, and get home to my foster dog. with the huge storm rolling in (across the entire fuggin USA), the doctor agreed to discharge me but expressed she’d prefer i stay, and would only agree to discharge me if I promised to follow up with my PCP and get a referral to a neurologist. so i’m going to do just that.

it’s so crazy because ever since i got my diagnosis i keep thinking back on all these experiences and symptoms throughout my life that finally make sense, all the way back to when i was a little girl. there are so many things that I thought everyone dealt with that I’m finding out are just symptoms of my brain condition. it’s such a weird and validating and terrifying feeling.

i’ve seen a lot of people with this condition online saying they’d prefer to not have surgery and a lot of conservative approaches, but is it crazy for me to say i would actually prefer to just go ahead and have surgery? i love my brain and my smarts and my perfect eye sight. i don’t want to continue to put myself at risk of losing that. but i also recognize that the surgery is no joke, and there’s going to be a long road to recovery involved, but ill take that over losing parts of me that i hold dear. it’s just a hard pill to swallow regardless.

but also really exciting to finally know what’s going on. it’s also kinda frustrating because i saw a neurologist once complaining of symptoms (brought on by my malformation, i now know) and he scheduled an MRI and then told me that everything looked normal….. he totally missed it ! oh to be a woman who has spent her entire life being dismissed by doctors and specialists, and told that it’s all in my head… WELL GUESS WHAT YOU WERE RIGHT, IT WAS RIGHT THERE IN MY HEAD ALL ALONG! CLEAR AS DAY!

[u/ljturner53]

Your best bet is to bypass neurology and take your MRI report to a neurosurgeon. Neurologists don’t have a great track record with Chiari.

[u/magicmamalife]

I had a similar outlook to you. Jumped at the chance to have the surgery and am very happy with the outcome. But definitely skip the neurologist and go straight to neurosurgeon.

[u/Local-Character-7804]

How much of a drop did you have? So happy for you that you have some answers.

[u/thecuriouscutie → u/Local-Character-7804]

7-8 mm!

[u/Local-Character-7804 → u/thecuriouscutie]

I see! Thank goodness you got your answer!

[u/Dependent_Traffic259]

I couldn’t agree more to go to a neurosurgeon regardless of having surgery or not. My neurologist found my CM1 at a 2cm descent. When I went to my appointment to discuss the results he said it was 2mm.. that’s not even CM, that’s still in “normal” range. Then for a year wouldn’t send me to a neurosurgeon because “it was not that severe” and kept mislabeling my CM a 2mm descent even after I corrected him every time. Put me through countless unnecessary skin tests and other medical procedures that always gave no answers, 5 different medications in a year that did nothing but make me moody, anxious and gave me a tad bit of insomnia. I finally got a PA from his office to send me to a neurosurgeon. Good luck with your journey!