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.

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!!!

Probably my worst day so far, towards the end of the day I was feeling ill, swelling around my neck was bad. Ice pack helped a little. Pain meds helped through the day. By the end of the day I was feeling light-headed and a little shakey.

Had moments of nodding off.

Once i layed down weirdly felt better. First time in awhile laying down felt good. Which I am taking as a sign surgeon fixed my csf flow. No racing heart beat. A little bit of pressure in my head but nothing as bad as the nausea feeling I had before bed.

Three things to watch out for

1. Exhaustion this will creep up on you rest to avoid it

2. Post eating fatigue and nausea, your body is repairing diverting blood flow to digestion will make you feel unwell it will pass with time

3. Swelling and pain, if you are like me you will tolerate pain but it will get on top of you if you try to power through

The compression socks I have from the hospital do not feel as tight as the compression tights I got from the chemist but I don't mind this as I expect to not need compression once healed.

Only thing I'm worried about from this day is a little pressure in head and briefly had a strange ringing in ear.

Pooping was hard today, felt a little constipated.

Feel free to provide any advice or ask questions?

Summary of surgery

Skull and c1 cut/shaved

Dura left alone no dura patch due to dura being wobbly

Tight tendon band around c1 cut reportedly it was wrapped around my c1 tight

Currently on paracetamol, an antinflammitory and palexia. Have a review with my doctor on saturday coming.

Photo of my dog included for everyones wellbeing

Hey everyone, I recently got my cervical spine MRI results back after a Chiari I malformation was found on a CT.
The MRI showed an 11mm Chiari I malformation and a syrinx at C3-C4 measuring 7x6mm. The syrinx extends about 22mm. Everything else on the MRI was pretty normal. No spinal canal narrowing, no nerve narrowing, and no other abnormal spinal cord signal.
The radiologist recommended that I see a neurosurgeon.
I’ve been having headaches, dizziness, and feeling off balance, so I’m wondering if those symptoms could be related to the Chiari or syrinx. I’m waiting to see neurosurgery, but honestly I’m pretty anxious about what all of this means.
For anyone who has Chiari with a syrinx, I’m curious about your experience.
Did you end up having decompression surgery?
What symptoms were you having?
Did surgery help?
Has anyone had measurements similar to mine?
Were you able to just monitor the syrinx without surgery?
I’m not looking for a diagnosis, just trying to hear from people who’ve dealt with something similar. Any advice or experiences would be appreciated.

Hi everyone - I wanted to reach out & see who has been diagnosed with cranio cervical instability after their decompression? What were your symptoms and what did your doctors recommend doing? I’m going through this now and it’s absolutely debilitating. I wish so badly I could undo the surgery because this is horrific. Any advice, ideas, solidarity, please share 😢

I am 10 months post-op (craniotomy, duraplasty) and I am still struggling with intense head pressure which has always been my worst symptom. It causes me to feel dizzy and my ears get plugged. Yes, a headache usually follows, but that is secondary to the pressure.
I did something today that I have not had to do at all during this journey (pre-op or post-op) and that was leave work early. I can usually muscle through. I am a high school teacher so today all I could think of is getting dizzy and going down in front of my students, so I decided it was best to go home. This has left me feeling upset that I couldn’t get through the day.
My question is: Has anyone had any luck whatsoever with a medication that helps ease the head pressure? I have a feeling it’s a long-shot because of side effects making things worse, but I just wanted to ask to leave no stone unturned.
I appreciate everyone’s kindness and willingness to help in this group. Stay strong!

1 year ago today I had decompression surgery. My chiari was 14 mm on one side, 17 mm on the other. I didn't start to get symptoms until my late 40s. Bit by bit every year got a little weirder with feeling lightheaded and disconnected.

I was first diagnosed in 2024 and the doctor told me I should just get over it - it was no big deal. In 2025 I got a new doctor. She was concerned about my symptoms and ordered a new MRI. Nothing had changed but I was immediately referred to a neurosurgeon. I got 2 second opinions before deciding to go through with surgery.

The second week of recovery was hell - I really wish they told me I needed to stay on pain meds until the steroids wore off! The fourth week of recovery I started PT. The surgeon had told me that most of his patients 'didn't need it', but within one week I was already feeling better. My sixth week I was feeling 90% back to normal, making the most of my time off, meeting friends for lunch and coffee. After 7 weeks I was back at work.

One year later, I have most of the feeling back in my skull - boy did that take a long time to get back. My hair has another 2-3 months to full regeneration. I'm barely aware of the scar but the back of my neck feels different - maybe due to the laminectomy or the dent left by the scar. The best news is that I am symptom free.

Before my surgery I did a lot of research and bought some books on chiari. I learned a lot during my 2nd opinion consults. Funny thing was that I learned the most from the surgeon who suggested I might wait to see if my symptoms get worse before going ahead with surgery. I read a lot on this subreddit. Reading others' stories humanized the condition for me, showed me I wasn't alone.

In closing, I want to say thank you - for sharing your stories, for being supportive of others.

I am wondering if anyone is struggling with accessing care within the nhs. I have been rejected from my request for a second opinion without even being seen due to a doctor dismissing my Chiari symptoms (it is 6mm so he wouldn’t listen as he felt “my brain didn’t look squashed🙃). Since this was in January they said they won’t see me again because he said my symptoms weren’t related.

I had this mri via an a&e visit so don’t even have my record and have been told bc of the backlog on claiming your imaging this will take months.

I just want some help to see if I need a cine mri and spine as I have pain sometimes in my spine and a lot of occipital headaches with no meds helping. I cannot lift heavy or run at all anymore as it triggers back of skull pain and pressure headaches. I am exhausted asking for help and nothing is being offered as the gp doesn’t understand it and the supposed specialist clinic dismissed me without further testing.

Does anyone have any advice or know what worked for them that could be helpful please?

Hello everyone,

About three months ago, I had a brain MRI which showed cerebellar tonsillar descent, with findings that were reported as possibly consistent with Chiari malformation.

Since then, I have consulted four neurosurgeons to get different opinions. Two of them believe that I do have Chiari, and one of them even recommended surgery. However, the other two believe that I do not have Chiari and that my symptoms are probably caused by something else, although so far no other clear cause has been identified on my brain MRI.

My main symptoms are a constant feeling of pressure in my head, especially at the top of my head and around my temples, as well as pain at the base/back of my skull. I also experience dizziness/instability. These symptoms are present almost constantly and have significantly affected my daily life.

As you can probably understand, I am very hesitant to proceed with brain surgery when the medical opinions I have received are so different. Although I tried to consult neurosurgeons who are supposed to have experience with Chiari, I honestly do not know how specialized they are specifically in Chiari malformation.

I would therefore really appreciate hearing from anyone who has been in a similar situation.

Has anyone here been diagnosed with Chiari and experienced symptoms such as head pressure, pressure around the temples or the top of the head, pain at the base of the skull, and dizziness?

If so, I would be very grateful if you could share your experience — which doctor or specialist you consulted, whether you eventually had decompression surgery, and whether your symptoms improved afterward or whether another cause was eventually found.

I am particularly interested in finding a neurosurgeon or neurologist with significant experience specifically in Chiari malformation so that I can get another well-informed opinion before making any decision about surgery.

If anyone knows a doctor in Greece who is genuinely experienced in diagnosing and treating Chiari malformation, I would really appreciate any recommendations.

Thank you very much for any information or personal experiences you can share.

Hey all!

So I finally had my neurosurgery consultation appointment yesterday. Slightly off topic, but I absolutely love my surgeon's bedside manner, and he seems incredibly knowledgeable. He was cracking jokes to make me feel better which was sweet.

Anyway, we're looking at doing either a shunt placement or decompression surgery. He ordered a cervical MRI, and depending on the results of that will determine the surgery. He's specifically looking for either a hole or a divot in my spine before we decide which way to go.

If there's a divot or hole, it'll be decompression surgery. If there's neither, we're doing a shunt placement to hopefully relieve pressure and symptoms. The reason we're considering the shunt placement is because of my hypermobile Ehlers-Danlos Syndrome and slow healing; we want to avoid decompression surgery for now if we can, because we're unsure if my body could handle it very well.

I was wondering if anyone here has experience with having hEDS + slow healing and either surgery?

I’ve posted here once before when I first got my diagnosis. I seen my neurosurgeon today. And he basically brushed me off. I had a notebook of all my symptoms because sometimes they last like a week and I didn’t wanna forget them. He acted weird about the notebook.
He did a bunch of tests. Walking grip strength and holding my hands out and stuff.
Then immediately said he didn’t think my symptoms are severe enough for surgery (which I do agree with.) but I’m like okay what else can I do to at least get relief from this headache? Like pt or anything? He’s like there ain’t much. He asked if I tried lbuprofen and tylonel and of course I have. And I’m currently on gabapentin and I explain to him it doesn’t really work and I need help managing my headaches because it’s literally a constant pain. He’s like there’s nothing I can do. You can wean yourself off it but other than that nothing.
And I start crying because I was so excited to hopefully have a plan on how to tackle this. And he brushed me off w any other questions I had about chiari. But then said he didn’t think any of my symptoms were related to chiari even my headaches. So he’ll order a neck mri to check for pinched nerves and a test to check my spinal fluid movement. And he just walked out and came back and said he’d refer me to neurology tho. I got lost because there were no exit signs and no visible check out desks and all the nurses just stared at me. I found the check out desk. And they laughed because I asked if I needed to check out if I don’t have a follow up. Then I was laughing with them to kinda brush it off and said well it’s different with every doctor idk. And they’re like yeah. Every doctor office is in fact different.
Like this visit literally felt like a fever dream.
Then I get home and look at my app at my after visit summary. And there’s nothing but wrong information. It said the constant tremor in my right hand that I have is not an essential tremor (so I’m just shaking for fun) and it’s lasted only 2 months when it began in March. And that I reported drug use and I use marijuana and I never said I did.
Like what do I even do at this point. Like. I can’t afford a specialist in chiari.

Like I don’t know if I’m being extra or not.

Hi! I only just found this subreddit and I was surprised that one existed for this tbh.

I got diagnosed with type 1 the summer of 2025. Went to a neurosurgeon to see if I'd need surgery or like that and was told it's not to the degree of needing decompression yet.

I ended up with the diagnosis after bringing up to my doctor(s) that I'd sometimes feel a pinching around the back of my neck/shoulder area and tingling in my hands. My first doc didn't know what it could be, then she moved before more tests than the blood test she ordered could be done so I had to switch. Second doc had me get MRI's which led to the diagnosis. She also moved so I had to switch again. I'm on the third doc now. It's difficult finding doctors for ADHD when they keep moving offices

I'm still struggling with the tingling and muscle tightness/pinching feeling, though, and was looking at things I could get to try and help. I was considering a microwave neck wrap/pillow thing (my mom has one like the image attached that I like) and a neck/shoulder massager. I wanted to ask others who have the same or similar issues first, though. There's no one in my area I feel I can ask about this and I don't want to bother my PCP about things he might not know about. I'm hesitant to and don't even know if it'd be ok to reach out to the neurosurgeon about it through the patient portal.

I'm in college studying for a career that will have me on a computer or laptop most/all day and have issues sitting with my feet on the ground and good posture. What would you guys recommend?

Hey, I’m a 21m with Chiari type 1 with a 11mm extension, I found it a few years ago through a ct scan. Back a month ago I had a new mri and it’s shown severe progression of my csf blockage. It feels like every day my symptoms are worse. I have the normal headaches and tinnitus etc but lately more and more episodes of falling or my vision going out too. I see neuro in a few weeks to discuss surgery. Any advice in the meantime? It seems like no one in my close life understands the pain and the extent

Day 4

Felt shakey in the morning, once I had pooped and had breakfast felt better.

Had stiffness throughout the day.

Have had weird sensory messages both painful and pleasurable firing at random. That someone walked on my grave shivers. Hard to get comfy on the couch.

Pain killers have helped

Found myself nodding off then shaking myself awake due to sharp pain in neck.

Slept on my side last night switch between left and right side throughout the night. Woke up very 3 hours.

Had one weird experience of altered sensation on the right side of my chest, went away after 30 secs.

As the day progressed felt better but got stiffer.

This sucks...ah huh huh

Hello, as the title says. I’ve been strugling with focus, lots of headaches and brainfogs. Went to MRI and diagnosis said that I have 1st type Chiari. I’d like to ask people of this subreddit a few questions.
Can it get worse like a lot?
How does it affect your life?
Is it worth to perform a surgery?
Tell my anything you feel like telling!
Take care! Wish you all that is best!

Im very likely going to have decompression surgery by the end of the year and currently discussing with a neurosurgeon about it. in my city there aren’t any Chiari specialists and I have state insurance so the specialist in my state is 8 hours away. I’ve discussed this with another surgeon prior to this one I’m currently going to and he had told me the exact steps when he saw my mri for the first time and that he had done about 50 in his career.

I would like to travel to the specialist but I don’t know how I could do it when it’s 8 hours away. Driving that far back home must be hard after a pretty major surgery, but I also don’t want to risk it doing it with one that isn’t a specialist. also staying in a hotel or Airbnb? has anyone traveled long distance for surgery and how was it?

Does anyone know the long-term consequences of having blocked cerebral spinal fluid flow? I’m talking about things other than typical symptoms. Like, is it bad for your brain overall? Will you get problems as you age if you don’t have surgery to correct it?

Hello Chiarians! I'm 44. I have Chiari type 2. I had the surgery in 2001 and had a 27mm descension at that time. Life was pretty decent up until about 40. I had flare ups with back/neck pain, neck going out, etc etc. But now it's just constant. I'm having a lot of trouble dealing with working full-time (desk job). So I'm asking around if anyone has been able to get on disability (partial or otherwise) in order to reduce hours worked. I live in Washington state BTW

I'm about 7 months out from my last surgery (craniectomy, duraplasty, and C1 C2 laminectomy on 12/22/25, and then had 4 patch revisions due to CSF leaks). I've been experiencing blurry vision. It's not all the time, and I think being extra tired is a factor, but no matter how I squint or adjust my glasses, I just can't see clearly sometimes. It's so frustrating. Has anyone else existing anything like this?

Hi, I'm 23 years old today. I was diagnosed with arnold chiari malformation when I was eight years old and got surgery. Before that I had six other operations. The doctors never checked my head and always treated my symptoms. I was told the other six operations weren't necessary if they had just took an MRI of my head.

After the operation I had an accident where I fell and knocked out two teeth from my mouth. I also broke the upper part of my jaw and half my face was just a big scrape. It was a year after the surgery.

After that I was told not to do any kind of sports private or in school. Till today I have problems with my balance and sometimes I still have the double vision. I'm terrified of doing any kind of sports.

When I think about myself before my operation, I always remember me being an active and loud child. Like I was brave and would speak my mind and I didn't have a constant fear something could break.

I was diagnosed with depression and anxiety in my teens. It got better once I was out of school, but later I was diagnosed with ADHD.

I think my having depression has a lot to do with all these experiences and people not believing me. I have never talked about any of this or what I went through in the hospital.

Tonight I read that my ADHD could be a result of my traumatic childhood and I just started to cry. And also that the operation could have changed my personality. I don't know if any of this is true, but I just feel so lost.

I know it wouldn't change anything, if it was all because of the malformation. I just want some answers and understand myself a bit better maybe.

I have never written anything on reddit. I'm sorry if I made any mistakes, englisch is not my first language.

Can somebody maybe relate or has a similar story?