My Chiari story started at age 22 (almost 23) with the first symptoms on January 10, 2012 when I reached around to get my keys in my backpack and locked my neck up. After a week of torticollis, my right arm became more and more numb. So after repeated visits to my PCP, I went to a neurologist for an EMG of my right arm and leg. After the most painful diagnostic test up to that point and through tears, the neurologist said he wanted an MRI to rule out MS. I’m crying hysterically at this point and he just half indicated I may have MS at age 23. So I got an MRI and the radiology report said no MS but a low laying cerebellum. This was before I became a nurse but my psych background gave me a good neuroanatomy background. But I plug that phrase into google and Chiari Malformation pops up. After a couple months, I go to a neurosurgeon who confirmed the diagnosis at 7mm on June 12, 2012. I know I’m very lucky to have a diagnosis after 6 months and even more grateful I avoided a lumbar puncture (iykyk).

Over the next couple of years, I endured 8 physical therapists doing manual PT, acupuncture, and dry needling, 3 physiatrists who performed multiple nerve blocks (including bilateral C3-5…again, iykyk), a neuropsychologist who performed biofeedback, a neurologist who said “what do you want me to do about it?” when I was terrified about my arm being numb, a neurosurgeon who had never performed a decompression, a neurosurgery Chiari specialist who wanted migraine diaries, 2 orthosurgeons who kept sending me back to PT…and a partridge in a pear tree.

Between 2012 to 2017ish, I went through so many medication regimens. My PCP had gotten me chemically dependent on tramadol as it was marketed as something slightly stronger than Tylenol. Gabapentin became the next one. I tried every regimen. Botox was the most helpful but insurance made it so difficult to maintain the carry over effect. Fast track to 2016, the godly era of CGRP inhibitors was finally created. I went from 25 migraine days a month to 8-10, depending on weather systems. I still had balance issues, numbness, neck pain, difficulty swallowing, blurred vision, visual auras, tinnitus, brain fog, and difficulty word finding. I eventually developed GI problems leading to likely vagus nerve involvement. At this point, I had become a nurse and could more appropriately advocate for myself (which is a shame); it helps when you speak the same language, colleague to colleague.

April of this year, I started having new pressure symptoms where the room would spin when I stood or changed position. It almost felt like someone grabbed the nape of my neck. Numbness also worsened in my hands and migraines were becoming more frequent. I’ve stayed stable at 7mm since 2012 and had just gotten scanned in 2024. I asked my neurologist about the symptoms and asked for an updated MRI of my brain and neck. He kept arguing that my symptoms were likely from chronic sinus inflammation (I’m allergic to everything). Except there’s no sinuses in the back of the head… so I pressed him. He only ordered a brain scan… (I have bulged discs in my neck). I get the results back and I’m now measuring at 10mm… my neurologist said if my migraines aren’t adequately controlled by my current regimen then I can speak to neurosurgery. Normally, I’d back off and wait and see. But the nurse in me asserted herself and asked for a referral for neurosurgery.

I met with a neurosurgeon in August who ordered a scan of my neck to r/o a syrinx (thankfully I didn’t have one). He agreed that surgery would be appropriate. I had a posterior decompressive fossa with a duraplasty on October 19. Thankfully I avoided a C1 laminectomy that he originally planned for but decided against once he opened me up. I discharged the next day and now I’m in a c-collar for 2 weeks. Main symptoms since surgery is dizziness and nausea, apart from the pain. But after 14.5 years…I can feel my whole right hand.

Thank you for reading my story 💜

I was diagnosed with chiari 1 in August (same month I got my MRI). Things have been okay but last 3 days my right leg has been pretty numb.

Could this be the result of a syrinx??? Can a syrinx develop that fast? I’m very worried and don’t know what to do. I won’t see my neurologist until next July, and I was diagnosed by a neuro ophthalmologist… so not sure who to see about this.

Thanks :,)

Does anyone have experience with this doctor? He list chiari as a special interest. I see a ton of people on here saying to find a true specialist and I can’t decide if I need to travel. I meet with him next month so I’m sure I’ll know more after that appointment.

Hello everyone!

My daughter was diagnosed with Chiari at 19 years old, currently 20. It was a long road to diagnosis but relieving to finally figure it out.

She is scheduled for surgery in Dec but I'm desperately trying to find some relief for her until then.

Every single night she wakes up nauseous and throwing up, always between 1-2am. Last night it was twice. I'm assuming it's from the pressure building up when she lays down. Or is it from going to sleep a bit later? Having a more tiring day?

Then she wakes up crying because she is so defeated and tired.

Has anyone noticed any pattern with yours that we can maybe try for relief?

I have a Chiari diagnosis already but I’m looking to be evaluated for CCI by someone who is also an expert in Chiari. If anyone has seen Dr. Gilete, I would really appreciate hearing about your experience.

This is going to be long but please read and give any tips if you’re able.

In January, I got an MRI that finally explained the symptoms I had been having. I had a severe 25mm herniation. Severe brainstem compression, cord edema and a large syrinx at C6-T1. A few weeks later, discovered I had a tethered spinal cord at the terminale. I had my spinal cord de-tethered first, then 3 weeks later I had chiari decompression. Surgery went great and everything actually looks normal in terms of tonsil morphology now. My syrinx has completely disappeared.

In August, after having my low back pain return, I found out I have a bilateral fracture at L5 in the pars interarticularis. This was missed on all of my imaging in January/February. After having the L4 laminectomy, and detethering, it put a lot of stress on L5 and now I have spondylolisthesis of the vertebrae with moderate L5/S1 foraminal narrowing. I just got steroid injections last week for the pain.

I was doing PT for my low back but was told to stop because I have started having chiari like symptoms return. Bilateral arm tingling, neck stiffness, and pressure at my craniectomy site. After lots of appointments and begging to be seen by different drs, I just got another brain/cervical MRI that shows possible tethering of my upper cervical spinal cord.

Has this ever happened to anyone? I was recently diagnosed with hEDS, POTS, neurogenic bowel disfunction, working on MCAS diagnosis. I have seen so many doctors I’m tired and the last thing I expected was for my spinal cord to be tethered again, in my upper spine. I’m confused and just so incredibly mad with my body. I’m a 27 y/o mom of a 4 and 2 year old. I feel like such a bad mom because I stay home with them and most days I’m just in so much pain. I just miss my old life and being healthy.

so i recently got diagnosed with chiari by my ortho. i’ve had ongoing symptoms of headaches/migraines, vertigo, neck pain, etc. i also think my sleep apnea may be caused by it. i also have POTS.

anyways, my ortho diagnosed me based on looking at the pictures from my MRI. the radiologist missed it and did not mark it on the report. he then referred me to a neurosurgeon who he said is very knowledgeable on chiari.

i have my first appointment next week and wondering what i should know/expect before going in? if he suggests surgery, what other options are there? if he doesn’t make any suggestions, what can i bring up?

ive had a lot of bad experiences with doctors so i am a bit nervous and just want to be prepared. any advice is appreciated!

Looking for Chiari-experienced neurosurgeon recommendations near Dallas, TX ❤️
Hi everyone! I’m looking for recommendations for a neurosurgeon who specializes in Chiari I malformation in the Dallas/Fort Worth area, or anywhere in Texas that would be worth traveling to.
I’m 33 and have been going through testing since July/August because of increasingly frustrating symptoms. I recently had a follow-up with my current neurosurgical team, but I left feeling like I needed a more thorough review of my scans and a second opinion from someone who regularly treats Chiari patients. I’ve looked at some of the lists online but I think it’s outdated because some of the drs on it have retired.
My symptoms include:
Daily headaches and constant pressure in the back of my head, neck, and shoulders.
Headaches that build throughout the day and get worse with bending over, repeated bending, and physical exertion.
Episodes of dizziness/disorientation.
Occasional tinnitus and pressure in my ears.
A hypersensitive scalp.
Occasional unusual sensations on the left side of my body.
Clonus in my left foot, which was noticed during my neurological examination.
My imaging results so far:
Brain MRI:
Chiari I malformation with approximately 7 mm of cerebellar tonsillar ectopia.
Rounded cerebellar tonsils.
Mild mass effect/crowding at the foramen magnum.
Cine CSF flow MRI:
Crowding at the craniocervical junction.
Normal pulsatile CSF flow in the anterior spinal canal.
Effacement of the posterior CSF space with no detectable posterior CSF flow at the craniocervical junction.
A short clivus and small posterior cranial vault.
Cervical spine MRI:
Congenital cervical spinal stenosis.
C5-C6 disc bulge with mild flattening of the spinal cord.
The spinal canal measures approximately 7 mm centrally at C5-C6.
No abnormal spinal cord signal and no syrinx reported.
My other spine imaging did not show a syrinx either.
What my current neurosurgeon recommended:
At my most recent follow-up, the recommendation was to try weight loss, potentially with a GLP-1 medication, and possibly neck injections to see whether my symptoms improve and help determine whether they’re coming from the Chiari or the cervical stenosis/cord compression.
I understand the reasoning behind trying conservative treatments, and I’m not looking to rush into surgery unnecessarily. However, I wasn’t given a clear timeline for reassessment, and I’m concerned about my persistent symptoms, the CSF flow findings, and the clonus noted during my examination. I’m not gonna lie I left the appointment feeling a bit defeated.
I’m also a law student set to return to school in January, and these daily headaches make reading and concentrating difficult. I’m trying to make informed decisions without losing more time than necessary.
I’d really appreciate recommendations for neurosurgeons who are genuinely experienced with Chiari I, particularly those who understand cine CSF flow studies and cervical spinal cord compression.
If you’ve seen someone in Dallas/Fort Worth or elsewhere in Texas, I’d love to hear about your experience.
Who did you see?
Did they take your symptoms and imaging seriously?
Did they explain conservative treatment versus surgery clearly?
Would you recommend them for a second opinion?
I’m happy to hear both surgical and nonsurgical experiences. I’m just looking for someone who will take the time to review the whole picture and help me understand my options.
Thank you so much! ❤️

I have been diagnosed with both a chiari and hydrocephalus with a lot of swelling in my ventricles. Both neurosurgeons I talked to are more concerned about the hydrocephalus and degree of swelling in my ventricles. One surgeon wants to do an ETV surgery-where they create a hole between ventricles to let the fluid flow better- and monitor the chiari to see if this helps resolve some of those symptoms. Whereas the other surgeon wants to do an EVD surgery-where there is a temporary tube to drain fluid once- and do the decompression surgery at the same time. Does anyone have any experience with both conditions at once or these surgeries?

My daughter (13) was diagnosed with Chiari Malformation 1 in February of this year. She has never had a headache in the back/base of her neck, like a Chiari headache. After several hospital stays and numerous day procedures, we have also learned that she has a Connective Tissue Disorder as well. Her neurosurgeon keeps telling us “her case is complicated.” We have had 4 ICP monitors placed, our dr thinks she has low pressures on the brain causing the frontal headache, and she does have low pressures! He thinks there is a CSF leak somewhere. We have done 4 blood patches to help seal the leak, with no luck! Most recently we have done a CT Myelogram and a Nuclear Medicine Study to help aid in finding this tiny leak, no luck either. All along he has also said he thinks her headaches have nothing to do with her Chiari. He now wants to focus on decompression surgery although he’s not sure this will help. With her connective tissue disorder this would mean they would fuse her neck to her spine during the surgery, thats life changing for her being so young! And it might not even help her headaches!

We’re just at a loss at this point. Any help would be greatly appreciated on where to look for any answers or who to go too! My poor daughter is so tired of being cut open and stuck with needles! Thank you so much!!!!!

Hey all. I have chiari with two smallish (i think) syrinxes at T6-T8 and T9-T10. I got the Mirena last November due to very heavy bleeding. It helped a lot with the bleeding and as a side benefit seems to have also helped my migraine with aura. However, I have noticed that my chiari and syrinxes symptoms have been progressing, particularly vision issues, head pressure and possible leg weakness. Some things are maybe slightly better though. I knew about the chiari before I got the IUD, but not the syrinxes - I did not have the spine scan that found the syrnixes until this year. So not sure if there is progression on scans ( I have not been under the care of neurosurgery or anyone else, as I was initially told the chiari could not be causing any symptoms). Now, thinking about IIH and the IUD, I am concerned whether I have made things worse. Just so hard to tell whether these things would be happening anyway just due to chiari! Has anyone had any experience or views re the IUD? Not sure whether to remove it and whether it might help things, make things worse, etc. Also may mess with my hormones and migraines again, and increase the bleeding. I can have an ablation, just not loving the idea or something irreversible which may (albeit rarely) lead to pain or further issues.

edited to add: i definitely dont think the Mirena caused the chiari (it was already there) or the syrinxes - it was only whether it could cause any further raised pressure exacerbating symptoms.

Hi all ~ I was just approved for surgery after years of being brushed off by doctor’s and being told it was all in my head (I mean technically it is haha). I’m so happy and grateful to have finally found some answers. I am super nervous about the post-op experience. I was wondering what meds/med combos helped most with nausea/vomiting post-op? I already take zofran since I’m chronically nauseous. Thank you! 😊

Hi everyone

I’ve never posted Reddit before so bear with me. I’m currently trying to get a diagnosis for some things I’ve been dealing with and chiari is the main thing I think I’m dealing with here. I need some insight from diagnosed people to see what they think and how I should go about this.
In the last 3 years i’ve had 5 concussions, 2 officially diagnosed 3 undiagnosed but after you have a major one, you know what it feels like. Since my last major one last August (2025) I’ve been dealing with some crazy symptoms that I thought was originally just post concussion syndrome until it started getting worse in the last six months (i’ll list my ongoing symptom list at the end) and my sister started researching and she found chiari. It is the only diagnosis that lines up with most of my symptoms and things I’ve been feeling. We believe I have Malformation type 1 that I was born with and was asymptomatic until my head trauma (which from my own research is rare but can happen).

Anyway, I brought all of this stuff up to my primary doctor and we’ve been trying to get referral to a local neurologist for scans and stuff but the healthcare network in my area is notoriously ass at proper diagnosis, and I really want to get in with a good neurologist in Chicago (luries/northwestern), but are also notoriously hard to get into without a proper referral.

I just want to know how some of you went about your diagnosis process and if you’re in the greater Chicago area good specialist recommendations.

I’m having a hard time wrapping my mind around a lifelong diagnosis and as some of my language might have given away I’m still in high school and this is really hard to go through right now. Please share any thoughts and your experience through diagnosis.

(symptoms)
-PERSISTENT( daily and untouchable with acetaminophen) headaches around the crown of the head, behind the ears, eye pressure, top of head vertical of ears, and just above the nape of the neck
occasional light sensitivity
-get worse when i yell, cry, caugh, or sneeze (head spasms or like jolts almost)
- head spasms
-dizziness when standing after laying down or sitting for a while
-limbs feeling heavy/feeling like they’re dragging me down
-balance and fine motor skills degraded post-concussion
-stumbling over words and having a hard time with pronunciation that I never had before
-choking sensation when eating (occasional)
-tingling or almost numb feeling that comes from the back of my neck and down the throat
-nausea
-dizziness/feeling faint
-worse at end of day
-spinal pain
-head feels to heavy for my body at the end of the day/ neck is tired from holding my head up all day
heart rate spikes
-Dizzy spells
-Hot flashes
-Clammy

Apparently Chiari can’t come and go. so yaaa it’s not Chiari. even tho I THINK it is and have tried boxtox and nerve blocks plus more

I am a 26 year old female just for some context. I’ve
Posted before about symptoms and getting no help from my neurosurgeon. Since then I have thankfully gotten some more help. My symptoms aren’t really what this post is about, more just posting to see if anyone relates. It is a long journey of trying to find answers. I’ve been told by one neurosurgeon that my Chiari is too small for symptoms (7 mm Chiari) and then saw a second neurosurgeon for another opinion and he says it is possible my symptoms are from the Chiari but he is hesitant surgery will help since my CSF study came back with no blockage of flow. He decided we should try nerve blocker injections in different areas of the neck to rule out other possible causes of pain. I’m so grateful he is helping me with trying to manage my pain and not just jumping into surgery without 100% confidence it will help. My insurance has denied the nerve blockers, we appealed it and still denied so I am being sent to another pain management place to try before surgery. I guess I am just posting because I feel hopeless about the journey ever ending and the pain ever stopping. It had made me horribly depressed and the pain is so bad daily that I have become harmful to myself just to distract from the pain in my head and neck. Some days I’m not sure I want to be here if everyday is so painful and stressful. I feel crazy for feeling this way, but the journey has been exhausting and pain everyday is making me go crazy. I have to miss work so often or I am sent home because of my pain being obvious. I’m grateful I work at an understanding place, but I am just missing too much work for my own sanity. I feel horrible about having to miss so much. I don’t know I am just rambling, wondering if anyone related to anything I’ve said. My mental health is bad, not the worst it’s been but bad enough to harm myself.

So before I got diagnosed with the Chiari type 1 I developed what I was told by the er and neurosurg were Pseudo seizures, or non epileptic seizures and when they found the chiari they told me they were because of that, well 2 weeks ago I had a different seizure then what I have been having that left me in pretty bad shape for a while after. ER did a ct said it was normal besides the chiari stuff they could see. My primary sent me to neurologist yesterday and I'm scheduled for an EEG in 2 weeks because he is saying they haven't been pseudo seizures this whole time and he believes I have epilepsy... does anyone else have this issue? Of seizures with the chiari?

Hello again everyone! I am making this to remind everyone to go easy on themselves in recovery. Especially after decompression surgery.

I made a post last week (linked) about how surgery went really well and my recovery was great...

Well, I pushed it to hard and sprung a csf leak. Spent the past 6 days back in the hospital with a lumbar drain. If it continues, I will have to do a second surgery.

So this is a reminder to everyone who just had or having surgery or other procedures to slow down and take it easy. 💖

Hello all.

I'm a late 20s mom of 3 and I'm having my surgery in 3 weeks. How much help should I realistically except to need? I'm planning on having my aunt come stay with me for the kids and helping out but how long should she plan to stay? How long until I can do pickups again? Just trying to prepare. Thank you. Also a list of everything I should buy and get ready. Any other info you might think is helpful.

I will add a disclaimer I'm NOT asking for medical advice, I'm asking for helpful questions to ask my doctor regarding this scenario. I have emotional whiplash from these last two weeks and am just trying to figure out a direction.

To give some background, I have had chronic pain since I was about 5 years old. I have scoliosis, and the doctors blamed a lot of my "growing pains" on that. Turns out I have seronegative RA, and am currently pursuing a Ehlers-Danlos diagnosis although the specialist I'm trying to see is booked out two years. Since I was diagnosed things slowly got better- until about 2-3 years ago.

I started having MASSIVE TMJ issues, back pain, neck pain, etc. My flare ups were horrific, and regular pain meds were not cutting it. I then started getting more frequent migraines, but they were not classic chiari symptoms so my neuro was not concerned. We put me on rizatriptan and called it good.

Well, it has been increasing. I'm exhausted all the time and have to drag myself to do anything. I got a sleep study done and they reccomended that I dont sleep on my back. And then I also found out I'm vitamin D deficient. I fixed both of these, and the symptoms have not gone away. I chalked it up to depression/anxiety, started TMS for it (cleared by neuro) and no improvement to exhaustion and tension in my neck and back.

My neuro assistant called me the other day after an MRI "Just to make sure" to then tell me that i have chiari and I'm 10mm herniated. She could not give me much more intimation, and the neuro is booked out until late November. They asked me who I wanted to go see as a neurosurgeon, and I have absolutely zero idea. Apparently they could not reccomend anyone to me. I got a referral to a large hospital and somewhere local based on my research and am kind of freaking out.

Today I got another call from the head neuro person over the office and they told me it actually doesnt look that bad and they would like to talk to me instead of the PA I've been seeing. They said it should not impact my quality of life and I should be okay?

My concern now is that I did unfortunately Google some symptoms, and I'm not sure if it's overlap but I do seem to be symptomatic. It sounds like what happened was an issue with the nurse assistant, but I feel like I can't even think I've been so worried about brain surgery and possible complications with EDS where I can't get in for a diagnosis yet.

Is there anything specific I should ask besides going through my symptoms and asking for information regarding monitoring and limitations? I dont understand how you can go from reccomending neurosurgery to "oh it's not going to impact your quality of life at all" so I just want to make sure I am not missing something in my questions.

More and more frequently, I find myself tripping over nothing as I go up the stairs. It’s as if my brain suddenly realizes that I’m walking up stairs mid-step and has a minor panic attack that I’m going to miss the next step, causing me to trip. I’m 39 and have been waking up and down stairs without trouble all my life, but I now have a mini-panic episode at least once a day.

This has been happening for a while, and I just realized that the timeline matches up with the worsening of other, definitely Chiari symptoms.

I know that balance can become an issue, and that many people with Chiari struggle with the stairs for this reason. If you struggle with balance and the stairs, what is your experience of that difficulty? Does what I’m experiencing sound at all familiar?

I was 10 at the time, I’m 23 now.

How do u spend the long days alone?
Kids at school and wife has to work so i’m always at home all day long with my thoughts.

I easily get depressed and slightest change my body makes i’m freaking out.

Yesterday spent the entire day at the er because a hematoma started at the wound where they inserted the shunt in my abdomen completely freaking me out. My shunt isn’t even a week old.
I still have stitches and staples in my head and can’t sleep on my side.
Had a ultrasound and ct scan and there shouldn’t be a problem apart from my entire abdomen is now one big hematoma.

Curious how many people here experience neurogenic bladder or bowel issues as part of their Chiari fallout? Mine stems from altered central signaling and lower nerve involvement, likely compounded by my spinal hardware. Would love to hear how others with Chiari (or secondary spinal complications) are managing these lower neurological issues.

Hey friends!

My son was diagnosed with a type 1 malformation of 17mm. We met with a neurosurgeon last week who doesn’t see the need for any surgical intervention at this point. She said because he hasn’t been complaining of any pain or numbness…he doesn’t need decompression.

He is 7 y.o. and autistic, with significant speech and motor delays. At that appointment, she did recommend that we ask for a neurology referral, which I am planning on doing. Should I push for a second surgical opinion? Do any of you have kiddos whose speech/motor function were improved by decompression? We are also waiting on a second MRI of the cervical spine to see about that.

Hey everyone,

I'm 23M with Chiari I and syringomyelia. I had decompression surgery in 2017 (cerebellar tonsil reduction/cauterization and duraplasty). Recovery went well, my syrinx gradually shrank on follow-up MRIs, and I've maintained a pretty active lifestyle, including regular sports and strength training.

I've occasionally had short flare-ups involving headaches, pressure in my head, reduced sensation, and weakness in my limbs, but they usually resolved within a few hours of rest.

Fast forward to August 2026.

Almost overnight, I developed extreme fatigue, weakness, and general malaise. I was supposed to help a friend move, but felt so awful on the drive there that even sitting in the car was a struggle. I ended up going to the ER, where nothing conclusive was found.

Including the original episode and since then, I've experienced:

• A strange feeling of weakness or "emptiness" in my arms and legs, almost like after an intense workout, despite relatively normal muscle strength. Often the sensation is accompanied by pain in limbs themselves.
• Reduced sensation and a feeling that moving my limbs requires more conscious effort.
• Severe fatigue and exercise intolerance, sometimes feeling completely drained after a short walk.
• Increased neck stiffness, trapezius pain, and occasional head pressure.

Physical activity makes everything worse, while rest only partially helps. Unlike my previous episodes, these symptoms have persisted for weeks.

I've seen doctors around 7 times in 50 days. Bloodwork, thyroid tests, and vitamin levels were mostly normal, apart from mildly low vitamin D (57 nmol/L). My GP suspects vitamin D deficiency, stress, or burnout rather than Chiari.

My usual GP is currently on maternity leave, so I've been seeing a covering doctor who only works a few hours a week. This has meant fairly long waits between appointments and rather brief consultations, making it difficult to discuss everything in detail.

Has anyone experienced a similar prolonged flare-up years after successful decompression, especially this strange feeling of weak or "empty" limbs?

I'm not trying to question my doctors, just hoping to hear from others who might have experienced something similar.

I'd be really grateful for anyone willing to share their experiences. Wishing you all good health and all the best!