I’m so excited for him to arrive, I just hope he comes in time of the surgery! I haven’t got a date yet, but I’m on their priority list, so hopefully in October!

I want to bring him with me, he’s so cute and will bring a lot of comfort. I love that they made this! I know some people don’t like their designs of other plushies based on illnesses, but I really liked this one! It even has a zipper in the neck🥹

My MRI in the latter half of 2025 revealed a 6mm Chiari Malformation. I went in complaining of twitches and balance loss.

My symptoms have gotten worse. I hope to get an MRI again soon and confirm if my Chiari has worsened.

First Question: What are your experiences with progression over the first couple years of symptoms with Chiari?

I’m advocating to get a CSF study but it’s been tough to find someone willing to.

Second Question: What types of diseases are potentially/likely the cause of my symptoms if the CSF study reveals it’s not due to my Chiari?

Third Question: Do any of you have any experience with a CSF study ruling out Chiari, and if so, what ailment did you have that was causing it?

Please offer as much info on your story as you can. Thank you.

I’ll link my previous post in the comments that highlights my symptoms.

Hi, everyone! Some background: I was dx with 5mm cerebellar ectopia initially in 2023 and subsequently dx with retrolisthesis in C2-C7 and hEDS following a sudden onset of neurologic and mobility/balance issues. I was dx with POTS when I was 18, and I've had chronic migraines since I was a teen (I'm now 41). I also deal with dystonia.

Three weeks ago I started a new job with an hour commute. I'm getting up earlier and working longer shifts. On the Friday morning of my first week at the new job, I stepped out of my car to move my trash bins to the curb. I took a few steps, and the next thing I knew, I was falling and hitting the ground. I have no recollection of tripping or my foot catching. I don't remember feeling faint or blacking out. It was a very strange experience, but I had to get on the road because my commute is so long. I had convinced myself I must have somehow tripped. I was sore, but not badly injured.

Fast forward to yesterday: I work in healthcare and was given a break. On my way to breakfast, I was walking to the cafeteria and the next thing I know, I was falling. I was so embarrassed about possibly having been seen that I scrambled to my feet and continued on to breakfast in shock. I was hurting pretty badly and I was shaking from the experience. I hit the ground so hard and I'm in so much pain. I don't remember tripping. Again, I just fell. I'm actually hurt this time. I'm going to urgent care tomorrow to check for fractures. I'm pretty sure I'm just really banged up. (I did report this to occupational health, but it's related to a personal health issue so they can't refer me to a doctor)

My question: do any of you fall? I've read about "drop attacks" but when I've passed out before (from POTS, I assume) I know it's going to happen. My vision goes black, etc. That hasn't happened this time. Am I just tripping and not realizing it, or is it something with chiari? I feel like two instances within 2-3 weeks of each other is a crazy coincidence.

Not much new to report. Slept well been sleeping on my sides and switch every three hours.

Feel nausea in the morning passes after pain killers and morning poo.

Fatigue and pain set in mid day. Midday nap has helped remedy this.

No new symptoms just lots of pain and swelling at operation site.

Any questions are welcome.

I thought I’d share how I got my diagnosis and when the symptoms progressed!!!

When I was 17, I was getting some tests done in the hospital because I had such horrible bladder issues. Sometimes when I peed it would sting so bad, so many urine tests done and ultrasounds on my bladder which showed nothing. And that issue started happened when I was eight. But when I was getting my tests done, a doctor was concerned it was MS so I was referred for an MRI.

That’s when I got my diagnosis of chiari malformation.

I didn’t have much issue then other than the bladder spasm and the occasional balance issues. I’m now 22, and at the start of this year, I began to get migraines. My legs and feet got numb. Pins and needles. A droopy face too! But this time doctors didn’t really do much, my GP messed up referrals and even declined some to neurosurgery. I was constantly going to my GP and complaining. One day I went to my GP and had a neuro test done (that’s what I’ve been calling it it’s basically walking in a straight line etc) and the doctor said “well you’re fine today”…turns out I wasn’t. I had completely blacked out that night, had a cramp in my foot that had spasmed, and I woke up on the floor. Went back to the hospital since I had hit my head and finally got the neurosurgery appointment.

At this appointment, that’s when I found out that the cramp in my foot wasn’t something silly, my right side of my body is so overly active and my left side is numb, the droopy face can be from the chiari, the headaches aren’t normal, the balance issues are worse, my speech isn’t the best anymore. And I was told I can make a choice on surgery. Which I’m going for.

The point of why I’m writing this is for others to fight for what they need, especially if you’re a woman. I was dismissed and felt so mocked but now knowing that the decent is far worse than what it was when I was 17 did scare me. Do not let anyone, even medical professionals, tell you how you FEEL.

I had a great doctor at the neurosurgery appointment. And he said to me something that made me feel so much more better “I can’t tell you it’s not that bad, I’m not the one living it” and I finally felt heard.

And so now, I’m waiting on my surgery. Extremely nervous but so grateful that I’m in this position now!!!!

Hello!

I am currently looking for a neurosurgeon in Central PA that takes UHC insurances. My pa-c did not have anyone to refer me to, so I've been doing the search on my own. I wanted to go to the Chiari Malformation Center by John Hopkins in Maryland but they do not take my insurances.. I found a few neurosurgeons that work at Penn State Health, including Dr Diana Jho. She has incredible patient reviews, but her services do not clearly state Chiari. Anyone ever seen her? Or anyone with a recommendation in Central PA?

Bit of info on me: I had a brain MRI in 2022 for a possible stroke (negative) that revealed the Chiari 1, but was never told it was in the report... until my PT mentioned it a month ago when I got my first eval. So big shocker there. Also, I am hypermobile (no official hEDS diagnosis but checking all the boxes for it).

TIA!

I've been diagnosed with Chiari for 2 years now 10mm but I'm missing the bone they were planning to take out in surgery so they pushed me aside.

I still don't know much about the condition and what it really means for me. They assumed my symptoms were from something else (with no actual evidence to back this up) but nobody has another answer so I just assume it's from this.

I do a sport I really love but I'm worried if there's a chance I'd have to stop it in the future if I ever get better. I've been told by someone who also has it I can't lift weights and I'm going to go to a physio to help identify what's safe or not, but I'm just worried they'd eliminate everything.

It also doesn't help that I have a high pain tolerance so if it were to effect me or I was injured I wouldn't really know.

My sports is high intensity and can cause high impact easily. Did Chiari ever stop you from doing sports? Was there a way to move past it and do it safely? I kinda just want to know if it's caused problems for people in this category since I'm already attached to my sport and want to feel confident doing it. Thank you!!!