r/chiari

Does removing the cerebral tonsils truly cause no neurological deficit? I am so completely overwhelmed by that idea.

I have no cerebrospinal fluid flowing to the back of my brain. Cine MRI shows it oscillating in the back of my neck. Syrinx from c6-t3. Chiari at 6mm with slight brain sag and medulla compression.

Symptoms include nerve both on both sides in arms and legs, horrible heat sensitivity, migraines brought on by coughing, sneezing, straining, yelling. Random brain fog and what I would describe as all day "pre-headaches" .

The surgeon says that my options are surgery, or waiting, doing nothing for a year and then checking it to see if there has been any progression/worsening. When we asked him if it's okay for my brain to have zero fluid to the back of it for an entire year, he said "we don't have enough science to answer that."

I am mid existential crisis trying to make a huge decision while I still have to go to work every day and the world keeps spinning and I am just... Overwhelmed.

The surgeon said my options are surgery,

So I finally got the chance to see the neurologist and I felt uncomfortable. It was fine at first but as minutes passed, he looked at me like I was lying because there are some symptoms that are not “typical” of chiari. Y’all, it was so hard to remember everything from the top of my head and I know how disorganized that I get. He just kept asking question after question when im still trying to explain from the last question he asked and I couldn’t understand what was being asked for the next question. When I happen to not bring up a symptom from my logs in the middle of thinking and explaining, he would point that out like im sorry, excuse me for having all of these symptoms that are so hard to keep track of. He was asking me how come I didn’t report these symptoms before and why didn’t I get a referral to a neurologist before. I’ve tried that but they all said that I needed a referral from a primary doctor and I didn’t have insurance then, still don’t. It was the most stressful hour and an half of my life. It’s like he was saying, “if you were having all of these symptoms, how come you didn’t do something about it years ago?” In my family, nerve problems are common (just not at my age) but I didn’t even have the chance to explain that.

He asked me to lift my right leg/knee up and I couldn’t lift it up high enough. I can’t recall exactly what he said, something like if I can get myself out of the car, I can lift my leg/knee and to try again, same thing happened and he asked if that was the highest that it could go. Mind yall, I have a weak lumbar, among other things, and walk with a cane. It’s like whenever medical professionals hear that you got help with organizing your symptoms by uploading YOUR OWN DAILY LOGS using AI (yes I know that tech like that is not good but I suck at being organized), it’s like they tune you out and side eye you when you’re just trying to make them aware just in case you report any new symptoms. At the end of the day, they are not living in my body to know what I experience from the time that I wake up to the time I go to bed. The only people that have been on my side were the ones that did my MRIs for the most part. They believed me but not my PCP and now the neurologist. Some people in the medical field are just so blinded by my age (im in my mid 20s) that they have this problem of doubting me. I live with the burning and vibrating in my spine, not being able to move my right toes for nearly a year and now my left toes are following behind, shortness of breath when just taking a few steps and having to take breaks to sit down, using a bath bench just in case one of my knees buckles, having to take a shower once every 2-3 days because my body has to recover from the one shower that I took, and that’s just the half of it. I keep pushing but they push back harder, making it seem like im fine and im exhausted at this point.

Anyone been diagnosed with visual snow? Or trailing images??

Who here has gotten second opinions because their first neurosurgeon didn't think their symptoms were coming from Chiari?

Did the second Dr recommend surgery? And so, if you got it, did you get better?

I’ve had it where, several times now, my headache gets so bad I have to vomit. It’s so unbearable and there’s nothing to do to get it to stop. It feels like someone is literally pressing into every facial bone with bricks or squeezing my head in a metal clamp. I sometimes feel dramatic when I describe it like that but it’s truly unmanageable. Does anyone else feel like that or know what to do when it gets like that?

Ice is usually the only thing that offers small amounts of relief. I have several types of ice packs to help with the pain - like eye mask ice packs, ones that will wrap around my neck/shoulders and some for the base of my skull.

All of this acutely started about 4-1/2 weeks ago after breathing improperly during weight lifting. It wasn’t immediate, but within a few hours a headache started coming on. By morning I was at a 7/8 out of ten with most pain around back of my head, but also neck and behind my eyes with light sensitivity.

Historically I have gotten maybe 4-6 bad headaches a year, only one of which has ever lasted overnight prior to this. Normally I’d take two Excedrine Migraine’s, rest in the dark and would have relief by the next morning.

This headache has been different; it literally has not gone away in the past month. It improved down to an average of 2-3 out of ten for a while but has been back up at a 5 for the last few days.

Initially saw an NP as my PCP was in Hawaii on vacation. NP was confused as she said symptoms of my headache included those of migraines, tension and a third type related to neck tension. She gave me toradol injection anyway and sent me on my way. No real relief so when my PCP was back he ordered brain MRI and angio brain MRI as I told him my husband was worried about a potential venus malformation.

Well as you can probably guess by this post, I just got results from Brain MRIs back which indicate a Chiari Type I malformation at 5mm which I know is the cutoff for diagnosis

I have started going down the rabbit hole of information. My PCP says first referral is to a neurologist and they make determination when to whether to refer to neurosurgery. It sounds like closest expert to me is Samuel F Ciricillo, M.D.
at Sutter Health in Sacramento who seems to have good reviews.

I started looking at all of the Chiari potential symptoms and a ton of stuff started clicking for me potentially explaining some things that have been going on for years if not decades unexplained.

Clearly the 4-6 bad headaches a year for last twenty or so years are likely related, though I wish I would have been able to identify something that could have triggered those at the time, they always seemed so random.

I have had stiff neck and neck and shoulder pain for last close to four years slowly increasing with tingling and numbness in my right arm and hand initially now in both. It happens while sleeping, driving, bike riding, and working at computer. I always assumed it was too much mousing, but when it started on the left side in last few months I was a bit confused.

I don’t generally have vertigo or dizziness, but I do get motion sickness very easily whether in cars, on boats or carnival rides and when it happens it takes a long time for me to recover from it, sometimes more than a day.

All of a sudden in the last 2-3 years I have started sweating profusely from my scalp, and only my scalp, even when I am not really doing all that much. I have also noticed that I am constantly having to adjust bed covers to have different amounts of layers over different parts of my body as if I don’t I am overwhelmingly too hot or too cold overall.

Brain fog/memory/exhaustion. I am 47 with a 2 year old and a 3 year old. The last three years my brain has been beyond foggy and my inability to recall words has been beyond frustrating. I also am exhausted constantly and have to constantly push myself to keep up with work, the house and the kids. I had assumed being an older dad and getting a lot less sleep was the sole explanation for all of the exhaustion, but now am wondering how much the malformation has contributed.

Slower than normal resting heart rate. My husband has always been in better shape than me and is always frustrated by the fact that my resting heart rate is so low. During waking hours it is around 55-60 bpm, overnight it averages between 38-45 bpm.

A few other things include trouble swallowing. I have gotten things stuck in my esophagus since I was maybe 10-12 years old. I’d either have to cough them back up or massage my chest and wait for them to eventually painfully go down. When I was a child they diagnosed me with a “funny tummy” which was basically their non-diagnosis saying imaging didn’t show anything. Later in life endoscopies explained it as it must be related to GERD scarring. Now I am wondering if it was the chiari the whole time?

Similarly since childhood I have had horrible hand/eye coordination, am clumsy, was bad at sports and my handwriting/drawing is just horrific.

Obviously not all of my symptoms are necessarily 100% Chiari related and I don’t want to sound like I am blaming all of my problems on it, but I also don’t want to leave things out when talking to the medical professionals as it sounds like some have the potential to not take you seriously.

From what I am gathering it sounds like neurology isn’t going to be able to do much and perhaps I should just try to get in with neurosurgery asap?

What are the options aside from decompression surgery are there? Are there any that actually provide relief? I realize from reading there are a lot of folks dealing with symptoms that sound a lot worse and more debilitating than mine. If there are non-surgical options that could actually provide relief I’d give them a shot, but if decompression is what is needed I’d rather just get it over and done with as soon as possible.

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

Get headaches that feel more like debilitatingly uncomfortable “pressure” rather than typical “headaches?” For example, when my chiari (which thankfully has been determined to be mild) flares up, I get this intensity that starts at the base of my skull, and almost feels like my head wants nothing more than to push forward, away from the top of my neck. When I get this “heavy head” feeling, I also have awful physical symptoms. Like an internal shaking, my whole body just feels utterly fatigued, but if I try to sleep, I cannot. It’s just the worst. Before chiari, a neuro had said it was likely me experiencing some type of migraine, but that never seemed right because none of the symptoms, down to the way my head feels (almost like it’s in a vice, though I know they are not tension headaches) match true migraine. Also of note, when I get these symptoms, absolutely no medication (that I have ever tried anyway) touches it. No pain meds, no triptans, nothing works. They are usually triggered by a session of heavier than usual weight lifting, or from a deep sleep of some sort (like if I drank alcohol or smoked weed night prior, which I no longer do either).

Just wondering if anyone else has had these types of symptoms, or can relate at all? I know many of us experience this differently. Thanks!

Hello friends,

I was diagnosed with chiari type I, 7 mm in June 2025. Say several neurologists and neurosurgeons saying that I'm not a candidate for surgery. No answers and no treatment so far. My symptoms include low blood pressure, near fainting, lightheadedness, migraines with aura, trouble swallowing, numbness in arms and legs.

Now I'm wondering if travelling by plane on shorter trips (<5 hours) is ok? So far I've never been told I can't but also the doctors here in Canada don't really help us at all and just wait for us to die. So thought someone here might be able to shed some light on if it's an issue or not. Thank you!! 🙏

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…

Hi everyone. I’m 24 years old & female;

In July of 2023 I was diagnosed with Chiari type 2, tonsils extended 22mm and also a syrinx which was like 59 x 4mm or something like that. I was lucky to have decompression surgery quickly, December of 2023. That being said, it’s been over two years now and I feel like I’m struggling now more than ever. My headaches definitely aren’t as bad as they were pre decompression, but I have so many other symptoms and generally just feel like shit every day. It’s like I have the flu, and I’m constantly not trying to puke. Constantly. No sleep is ever enough, I’m tired all the time. I wash a few dishes and my neck/shoulders/back are so painful. I try to help in the garden and around the house but I almost pass out every time I stand up. My hands go numb every night when I sleep.

I feel so guilty every single day. I’m not working currently, but trying to find a part time job that won’t kill me. I live on my mom’s property and she essentially pays for everything for me, even though she has several other kids (I’m the oldest). My bf lives here too and he fully pays rent to her and all of his other bills. I feel guilty when he goes to work, because I should be helping. I feel guilty when he’s home bc I don’t always have the energy to help here in the garden and stuff.

Sometimes it feels like it’s a lot easier when other people are around, probably because I’m trying to ignore how I feel. The second that he goes to work and I’m by myself, I just fall apart. I feel like no one understands it and I don’t know what to do.

Sometimes it’s hard because in the mornings before leaving for work, my bf will list one or two things and ask me to do them, if I have energy. I never have the energy. I just know that those things need to be done. He never gets mad if I don’t do them, but I know that sometimes he feels like I’m just relaxing all day. I don’t know how to communicate to him how exhausting it is to be inside my body and also I don’t know how to cope with that myself, because I feel like I used to have a lot of energy and then one day it was all just gone.

I also struggle with feeling like I’m complaining a lot, or taking up too much of peoples time by being sick. It’s so frustrating and exhausting, honestly.

At this point I know that I’m just rambling, there’s a lot more that I could continue to say.

Any advice is welcome. How do you guys manage the guilt, if you have any at all? How do I get rid of it? What do you do to keep yourself from going crazy?

** this isn’t a cry for help, necessarily. I have people. I’m in therapy. I’m trying. **

I was 10-12 years old when I was first diagnosed with a chiari malformation. The MRI was done due to the peculiarities of my scoliosis, and the chiari was found somewhat coincidentally. At the time the neurosurgeon at UW Seattle felt it was more incidental and not worth performing surgery on, especially because I wasn’t really symptomatic. I recall seeing the imaging show that I had the malformation, and that my CSF was not at all evenly dispersed through my spinal column. It looked as if there were pockets of fluid and nearly “dry” spots in some areas…

Now, at 28, I’ve had a few things make me wonder if I should peruse repeat imaging and possible intervention.

I have almost always dealt with ADD symptoms and some level of emotional numbness or muteness. It is often challenging for me to make decisions and to get things done. Typical add/executive function stuff.

I like to think of myself as a fully functional member of our society, but I do go to a therapist and often complain about feeling as though I’m missing out on emotions - along with the other add symptoms I mentioned.

However, I read the other day about the correlations (which I know is not necessarily causation) between chiari malformations and many of the symptoms I describe.

So my question is. Before I go down this rabbit hole of research and trying to make an appointment with someone, is this even worth looking into? Or should I just take it as it is and carry on.

I have been sleeping on a mountain of pillows for 20+ years because I get extremely bad pressure in the back of my head if I on a single pillow of any density. I was told my neck is too unstable to continue to sleep this way. My head is typically 30° higher than flat. What wedges and/or pillow systems do you find helpful?

I got diagnosed with Chiari at 16 and got decompression surgery and had a csf leak after wards. I’m now 20 and my old symptoms are returning but worse. I keep losing grip in my hands, my left eye isn’t keeping up with my right, I’ve had the same migraine for over a week, have what I think is csf fluid coming out of my nose, mouth, and throwing it up, as well as not being able to form a coherent sentence when it gets really bad. Any advice or anyone experiencing something similar? I got ct scans today because I had to go into the ER because I couldn’t feel the left side of my body or walk.

Randomly last night I was laying in bed and got a crazy sudden pain that was at the base of my my skull, only on the right side. It feels like there’s something just pushing on it or something I can’t find the words for it lol. I’ve never felt this before, is it a chiari headache? Is this normal? A nerve or something? I’m so flippin confused 😂

21F, I have chiari 1, no decompression

Does anyone else not really have much headache pain but have other debilitating symptoms like dizziness, vertigo, blurry vision, nystagmus, tingling & numbness, tinnitus, etc.? I have heard that some neurosurgeons will not do surgery unless you have bad headaches, but my neurosurgeon thinks surgery is justified for these other symptoms. For reference my herniation is about 30 mm, but the CINE MRI did not show a lot of obstruction in CSF flow. My symptoms got much worse after getting long Covid and also a gnarly upper neck injury. Everything gets worse with changes in barometric pressure, when bending my neck, and when lying down.

1. Will I be able to get in a plane 3 weeks after my surgery on the 7th of may

2. Will there be changes with anxiety

3. How long is the surgery

4. What is the risks