u/HerbivorousTrash

UPDATE: Got a call back. I have my first appt with the neurosurgeon June 1st! Just a few days after my imaging. Thank you to everyone who’s responded to me- you make me feel validated and less freaked out! I’m now feeling incredibly grateful to be seen so soon after hearing how long it CAN take. Now it’s just day by day till the end of the month!!

I posted a couple days ago about a summary of my symptoms. Now I’m trying to figure out what constitutes as a “normal” progression? I’ve gone most of my life with fairly mild and manageable symptoms up until the 24th of last month when I went to the ER.

Ever since then, my symptoms have progressed, in my opinion, super fast. Sudden and persistent leg and arm weakness in my left side, increasing numbness and paresthesia, reduced “awareness” of my body (I.e. diminished hunger signals), vision and eye issues. But no obvious pain or headaches. I still have function of my limbs and all that, but I’ve gone almost my entire life without ever having anything like this. I’d never even heard of Chiari until 2 weeks ago…

Should I try and get in sooner to get more imaging? The er did my brain mri, but I was unable to get through my spine… and radiology through the neurosurgeon ordered csf flow mri for the 28th of this month (soonest) BUT how do I know if I should wait until then?

With how quickly things have already been progressing, what can I do to speed up this process? Should I go back to ER? Would they even do more imaging? I have an appt on Wednesday to get setup with a pcp (mine that I’d had basically my entire life left the practice suddenly and I had to get a new one)

This is all so new and unsettling, and I’m literally just in limbo waiting to hear back from the neurosurgeon. I’ve heard he’s a really good one who specializes in Chiari, and works alongside one of the top Chiari surgeons in the area… but I’ve yet to be scheduled despite calling every day.

Ugh what should I even do? Not necessarily asking for medical advice, but I’m just so lost in how to navigate this sudden onset of persistent symptoms

Newly diagnosed as of April 24 at the ER with “mild 5mm cerebellar tonsillar ectopia on right side”. Went into the ER with facial and left hand numbness.

Ever since then I’ve noticed overall just reduction in sensation. Like I can feel but it doesn’t feel 100% like in my hands and fingertips. It’s so odd and I can’t explain it. I’ve had migraines off and on since 2014 and pins and needles/random nerve issues for the past 5 years or so… But had never even heard of Chiari until a couple weeks ago.

My MRI when I went in for mild symptoms in 2021 didn’t show anything apparently, or was missed. Was told I had low zinc and to supplement.

So I’m having a hard time figuring out if my symptoms are worsening or if I’m just hyper aware of them now. I have basically full function of my body, apart from left side arm and leg weakness (and a numb spot on the top of my left foot that used to be more like a pins and needles sensation and has recently changed to almost fully numb).

Are there any signs I should be looking for? I should mention I’m EXTREMELY anxious about all this and was unable to finish my second mri because I felt like I couldn’t swallow right when laying flat. That one was supposed to check for a syrinx and they only got my neck and shoulder area.

I’m waiting to hear back from a neurosurgeon who specializes, and my referral was finally authorized last week on Tuesday I believe. I call every day and the soonest they could get me in was the 28th of may for a CSF MRI.

Is my weird diminished sensation a cause for worry? I honestly cannot tell if my heightened anxiety is triggering/making it worse and I just want to get the process moving quicker so I can know if I need urgent treatment or surgery. I’ve also been soooo out of it and not “present” the past couple weeks.

Not so much a question I guess, but I’m just freaked out and want to feel better…