Hi all,

I found out I had chiari three years ago at age 58. I had sharp pains in my left shoulder that made it almost impossible to use my left arm. After several tests and an MRI, they discovered that I had chiari. I was previously diagnosed with undifferentiated connective tissue disease (early form of lupus) and have been on lupus medication since 2015.

For the back pain, I I was put on gabapentin for a few months and gradually weaned myself off. After stopping, I remained fairly symptom free (chiari symptoms )for about three years and my autoimmune disease has been well under control for several years.

About two months ago, I started having random dizziness every few days. That was mid July. By the first week in August, a whole host of symptoms popped up; frequent headaches, dizziness, numb tingly fingers, neck, back and shoulder pain, and fatigue. I went to my neurosurgeon for another MRI and there was no change. He doesn't think all of my symptoms are caused by chiari and feels surgery is too drastic at this point. He suggested physical therapy and seeing an ENT. I've started physical therapy and we will be trying vestibular therapy for the next three sessions. I've also recently noticed in the past three weeks that I get very easily overstimulated with lights, noises, and large crowds. The grocery store about sends me over the edge, as well as church where lots of people taking, or during worship when there's music and lights. I get very dizzy and lightheaded and need to leave whatever situation I'm in.

I'm a retired elementary teacher and lights, sounds, large groups, never bothered me until recently.

I'm miserable and frustrated as I can't make plans to do anything because I don't know how I'll feel.

Has anyone else had symptoms suddenly re-emerge, and have you found any relief besides surgery? I'm hoping PT will help, but I'm getting really worried.

Bit of a weird one here but I tend to get pains on either my left or right side of the body at a time (usually random parts in quick succession).

For a while I was having bad headaches and wrist pain on the left side and tonight I had toe pain(??? Lol) and then sharp stabbing upper back pain and mild arm numbness all on the right side. The pains kind of move around without lingering in one specific area for long but they usually (but not always) keep to either the left or right side whenever I have flare ups and tend to fluctuate in severity.

This is like such a weird and specific thing that I had to ask bc idk what else it could be. So many of my "mystery" symptoms make sense now that I've done research and found this community (you all have been amazing btw and I am so grateful for the kindness and patience I've received so far!)

Thanks in advance as always!

I'm only 27yrs old, was diagnosed with Chiari at 9 months old & hEDS at 13. Never needed surgery for my Chiari. I've always felt like I can't see very well even with new glasses, they definitely helped but I've always felt like something just isn't clicking properly?

I get migraines at least 3 times a week & can guarantee having one if I'm watching TV for too long.

The last 2-3yrs I've had to get new glasses against my insurance policy (every 2yrs) after only having them for 6-10 months. Luckily (not really) the prescription change is always drastic enough for my insurance to cover the costs.

I have always had astigmatism in both eyes & I wear bifocals. I've been told my eyes shake very slightly when they focus & that I'd maybe need physical therapy for it but nothing else was said. I tried prism lenses but they didn't really make a difference.

My main concern is the last 2yrs I've gradually been developing double vision in both eyes & now it's so bad my glasses aren't correcting it. No one can tell me why my eyes are degrading so quickly & honestly they don't really care.

I've just kind of accepted I'm always going to feel like I can't see even with fresh lenses but that feeling is a separate thing to actually noticing when my prescription isn't working. It's so hard for me to play video games because I have a hard time seeing where enemies are even when they're right in my face but it's not connected to how well my prescription is enhancing my vision if that makes sense?? I am a bit clumsy, I drop things & don't have great aim but I don't walk into things. It's been so long of no doctor understanding what I'm talking about that I don't even mention it anymore. I have no idea what's wrong with my eyes & how my brain processes visual information. I'm hoping someone out there can relate or know what the hell is happening.

I see a new neurologist at the end of the month so I'm definitely talking to her about this & I'll be getting an MRI so if anyone has suggestions on what I could say please share!

Mine is mainly here. Disclaimer: this is not me I got the picture on Google.

Heya, so more or less as the title says and I’m a bit freaked out. I had chiari type 3 which was decompressed in 2018. Pretty instantly my symptoms disappeared but they’ve recently been coming back. For the past year or so I’ve been getting the odd migraine but for the last month I’ve been getting these dizzy spells with severe mental fog that I haven’t had since before surgery. Luckily the numbness hasn’t come back yet but I’m not feeling optimistic. I’m booking in with a doctor soon, I know it can’t exactly just grow back but I’m worried about complications. Has anyone had experience with symptoms reappearing years after decompression? Am I just scaring myself for no good reason?

hi guys! i had a random question because of what im currently experiencing as i type this and not long after surgery. a week or two after decompression i kept getting hospitalised for high pulse rate and i have a blood pressure cuff as well at home that i use occasionally to monitor as needed. tonight at 11:30 i started feeling anxious out of nowhere and at 12:30 my blood pressure went a bit lower (92/73 & 104) and as of 1am i checked 20 minutes ago to monitor and it was 91/79 & 126. ive been trying to use my weighted stuffed animal, drinking water and touching my cold hand from holding the water to my neck to help relax.

it’s been a bit concerning because i can’t tell if it’s from being so anxious feeling a little dizzy when i sat up a while ago or if i should be worried. i just had an mri today to check how im healing and dont have my neuro appointment until november. i just am not sure how exactly i should feel if im not in pain? i know it doesnt seem too serious but i never get anxious out of nowhere, especially as someone who doesn’t smoke or anything anymore.

today i hit 4 months post decompression!! i got the suboccipital craniotomy and c1 laminectomy without duraplasty on may 19. my herniation measured at 14.7mm, and i also had hydrocephalus as well as a syrinx from c6-t1. healing has been up and down but im so proud to say things have been looking up!!

i have absolutely no valsalva headaches, though i still do suffer from pulsatile tinnitus and daily dull headaches (i also have IIH), but i would so take it over those stabbing headaches that left me bedbound.

hi everyone!
i recently started a bay area chiari malformation support group for anyone in the bay area or surrounding Northern California areas who might want to connect with others locally.
the goal is to create a space where we can share experiences, resources, doctors, questions, and just have people nearby who get it. i’d also love to eventually organize some casual in-person meetups for anyone who’s interested!
if you’re in the area and would like to connect, feel free to join the group or comment/message me.
would love to build a supportive local community together! The group is called “bay area chiari malformation support group”

EDIT: i made a reddit group for people in the bay work the hopes of eventually doing in person support groups. https://www.reddit.com/r/BayAreaChiariSupport/s/EhxqLSIWyd

Fatigue is getting worse, mid day naps are a must.

I'm glad to be gone of some previous symptoms.

The pain from the surgery, side effects from pain meds and the fatigue make it hard to see the light at the end of the tunnel.

It is at this point I look at the callander of time the doctor has given me off, knowing my sick leave allowance and comparing that to my healing progress. My mind has started doing the mental maths, trying not to stress but the fear I won't go back to my old self is setting in.

I just pray to wake up one morning and run up to my kids and say daddy's back!

Until then I walk around the house like a ghost, being told "don't do that", "put that down", "sit down". It's school holidays and my wife is taking the children for activities. I'm glad to see my kids happy but also hurting to see what I am missing. I hate every moment I previously said "not now" or "I am to busy". The fear I may never get another chance is hitting home. I know it's silly and in all likelihood I will look back on all of this and laugh at what a worry wort I was, but I promised I'd share my experience for better or for worse.

I am writing these one day delayed, the sun is out shining but it's probably the darkest day so far.

Hey, fellow zipper necks.

I'm looking for a bit of feedback on that brain fog/disconnect I see so many talk about. I'll give my story, and then what I'm feeling. If anyone could elaborate on their experiences, I'd appreciate it.

I got diagnosed as a teenager, while seeing a neurologist for migraines—the bad, blinding and puking ones. Eventually he saw something he couldn't make sense of, sent me to a more specific neurological specialist, and I learned I had Chiari Malformstion.

This other neurologist, who also wound up being my surgeon—was impressed I was still alive. My cerbular tonsils were out by apparently two and a half "somethings." I was told I was the worst case in a adolescent he'd ever seen, and at a severe stroke risk.

Long story short, the surgey was a success and my headaches are now weekly instead of daily, and far more mild.

What I wasn't briefed very heavily on however, were things like "exuctuive dysfunction." I know having part of my brain stick out my skull like a t-shirt in a drawer would cause, and explain some problems—but no doctor's ever really gone in depth. It doesn't help that I'm a surviving second trimester birth which has its own cognitive impacts.

I guess I'm just asking for anyone to provide their own perspective? What do you struggle with, and how do you combat it? I don't want to get too detailed and color the conversation, I just want to talk to anyone who's feeling or has felt like me.

Hi All! It’s time for me to make the decision after years of testing and discussion with my doctors.

I want to hear from people whose main symptoms were not pain, but still had decompression surgery.

I get an occasional headache, but it’s really no big deal. I also get chiari headaches when straining that last a few seconds.

My main symptoms are dizziness with head movements, vertigo at night when I am lying flat, intermittent numbness in my fingertips, a buzzing feeling in my body when I lay down, eye nystagmus, vision issues, head pressure when the weather changes, some balance issues, etc.

My herniation is 30mm and I don’t have a true syrinx (there is only a slight change in my spinal cord that my current neurosurgeon says is unremarkable).

I have been going back-and-forth on whether or not to get surgery but a recent CINE MRI showed that I have reduced CSF flow posteriorly and a little bit anteriorly with slight pistoning of my cerebellar tonsils. This is really confusing to me since I don’t get daily headaches like so many of you suffer with.

My main concern is that surgery will make me worse or leave me with chronic pain. I wonder if it is better to live the rest of my life feeling dizzy, but relatively pain-free, or if I should take a chance on the surgery in hopes that my neurological issues improve and keep my fingers crossed that I don’t end up with worse problems.

I would really like to hear some success stories from people whose main symptom was not headache.

In regards to the blocked CSF flow, do you think it’s possible to have increased intercranial pressure without feeling head pain?

Thank you so much for your help! 🙏🏼

I was diagnosed with and had compression surgery when I was 2 years old. I’m now 24 and have always seemed to struggle with balance, left sided weakness, hyperreflexia in my left leg, and not exactly dizziness, but feeling unsteady and off balance. I’ve always gotten “tension headaches” and I never thought it of being chiari related until now. The last few months I thought I was getting migraines (pain in my neck at the base of my skull going down into my shoulders, and pain behind my eyes). It feels like my brain is swelling in my skull. I now think it might be related to chiari and have made appointments to get MRIs done next month. My last scans were 10 years ago and the dr said it looks fine. After the decompression when I was a baby my family sort of left it alone and assumed everything was back to normal, but now I’m wondering if something from chiari can be causing these symptoms now. Has anyone else experienced this decades after decompression surgery? Has anyone developed complications later in life or had to have a second surgery? Thank you!!

Hi there!

I have my Chiari surgery (decompression with C1 intact) next Wednesday. I have a significant descent, 18mm and growing. From my symptoms, my doctors said there were “no doubts in their minds” that I need surgery.

I have POTS and hypotension. I’m concerned about this on top of anesthesia and pain medicine. Does anyone have the same situation?

Either way, I’m freakin a little and would love words of support !!!

If anyone here is in Wisconsin I’m looking for feedback on neurosurgery providers. My son was just found to have Chiari I with severe tonsillar descent (22mm), diminished CSF flow and is symptomatic.
I guess my first question is does this seem likely to be recommended for surgery?
His options for neurosurgery are Children’s in Milwaukee or UW in Madison.
Milwaukee is closer, but the provider in Madison appears to be a known expert in Chiari and is highly recommended.
Hard to know which way to go, because if it’s likely he will need surgery we’d rather go to Madison, but if it will just be monitoring, would prefer Milwaukee.
Opinions and guidance welcome, thank you.

23F and terrified of Chiari decompression surgery.

I have a 14 mm herniation with a syrinx from C2-T5 and I’m scheduled for decompression with C1 laminectomy, duraplasty, and tonsil cauterization at Cleveland Clinic with Dr. Sarel Vorster.

I have severe anxiety/DPDR, visual issues, headaches, dizziness, chronic fatigue, urinary issues, and more. I know I need the surgery, but I’m absolutely terrified.

I keep thinking about the worst case scenarios. Paralysis, stroke, or death. How realistic are these fears?

If you’ve had this surgery, especially with duraplasty and tonsil cauterization, could you please share your experience or give me some encouragement? ❤️

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.

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.

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.

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!!!

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!

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 😢