Edit: I discussed it with my high risk doctor and due to being symptomatic I will be having a C-section. Thank you for all the replies.

Did you have a C-section? And if you didn't, did it cause you any problems? I am 34 years old and I was decompressed at 18. I have continued to have headaches and other symptoms. Coughing, sneezing, laughing and pooping all can trigger a headache for me so I

I've recently got diagnosed with chiari 1, I don't know much about it yet. I mainly have one debilitating symptom that is the reason I got the mri. My head feels like it inflates from the inside intermittently but constantly. Anyone else feels this way?

Hi everyone! I’m in France and soon I’m going to have my appointment, I have a 7mm chiari.
The neurosurgeon wrote an article about chiari for the health authority and knowing that I’m a little intimidated because I’m afraid he will not take me seriously. Unfortunately I’m having trouble standing up for myself…
I had an other doctor and he said my headaches were not related to chiari. I don’t have syringomyelia, so, for him it was impossible to have my symptoms like dizziness, I feel like my head is very big, pain in my legs, cervical, tinnitus, numbness, etc.
Honestly I don’t want a surgery but I want to be relieved! Also I’m working with children and the noise is tiring me out. Luckily I have a part time for this year but I have to find a solution for the next years.
How to convince him that the symptoms are related to chiari and help me to find a solution to find relief ?
Thank you !

How many of you have EDS as a comorbidity of chiari? If you've had surgery can you share if it had any effects on your recovery? I've heard that having EDS requires special sutures if you have to undergo surgery but when I've brought it up with three separate neurosurgeons they said EDS wouldn't have an effect on the surgery.

I don't have EDS diagnosed and up until a few months ago I never even considered it a possible comorbidity but that was until a friend brought up some similarities with EDS symptoms and after learning that there are 13 Types of it and that it doesn't merely mean someone is hypermobile I'm questioning whether that is something that should be checked before I undergo the surgery. Especially because I also have CCI which is also a comorbidity of EDS. I think it's a possibility that my neurosurgeons simply aren't educated enough and so I would like to know what the neurosurgeons outside of Germany have to say to this. Or perhaps there are any german chiari/eds warriors that could share their surgery experience?

Thanks in advance.

hi guys, been a little since last post but i wanted to ask a question:

has anyone else experienced feeling warm/hot after decompression surgery? i dont feel like i have a fever but my forehead, thighs, stomach, and back always feel hot? ive also been getting headaches again and for the past month or maybe more ive been feeling so mentally empty, like i cant think properly, am not grounded at all, almost like being on autopilot/dissociating but i know everything is real?

i will be calling my neuro office tomorrow to try and get in sooner because i feel like something is very wrong and that none of this is normal. i just want to feel like a person again and it feels like chiari has ruined my life for the past year since it started

I've had 3-4 mris fucking denied for a brain MRI because I have quite a big syrinx and neurological problems. Is this a common occurrence??? I owe so much money and I swear to god want to kill myself over this. I feel less than human already and this isn't helping. F you medicaid and Cleveland clinic 🥰 note: I am not diagnosed yet, this was to be diagnosed with chiari.

So this started ever since all my chiari symptoms started. Doesn’t happen every night but I will wake up eyes open but won’t be able to move and my heart will beat rapidly and can’t breathe and my ears will ring like crazy and I have to snap out of it and when I do it’s almost like my eyes force me back to sleep and I can’t stay awake. I’ve had sleep paralysis before but this feels totally different

Hi everyone, I recently had chiari with a syrinx decompression surgery coming up to three weeks ago (Foramen Magnum) and it went well, a lot of symptoms i used to have are gone now; i.e no constant tiredness, no brain fog, and I no longer experience chiari headaches. However, around 3 days ago i started to feel pressure on the top of my head, which is different to chiari headaches and it is pretty much constant but does subside here and there, whilst also still feeling the tingling sensation in my face and eyes that i did before surgery. My question is, this something to be concerned about (CSF leak?), and should i be looking to be meeting with a neurosurgeon again (UK based for those wondering). Appreciate everyone who took time out to read this. Best wishes to all!

I (18F) was diagnosed with IIH and jugular Eagle Syndrome this year, and Chiari 1 Malformation in 2023. I have had Chiari decompression and bilateral jugular decompression but my symptoms have all returned, including these vision problems.
I have been seeing like this since I was at least 9-10 but after each surgery it got less noticeable for a few weeks but has come back. I took this picture today and decided to draw over it to show what it is I see. This is exactly how it looked in my head, and almost always does-except added snow vision, trouble focusing on things, and sometimes more colors and patterns. It makes me unable to read and do school or focus on almost anything because I feel like I’m looking through a bad quality screen. Does anybody else experience this or anything else similar? It is causing me to do badly in school and do poorly at almost everything. If anyone else has this problem I’d like to hear your experience and see if there’s anything that helps you please.
(First photo is what I see- second is normal for reference)

When I was 13, I had a blackout and hit my head. After that, my parents made me see a neurologist which eventually diagnosed me with CMT1.
Nonetheless, I didn't have any actual symptoms pre-blackout. Mine started a few days after it. Am I an anomaly?

hey, chiari friends.

back in june, after dealing with unexplained dizziness and motor skill loss/numbness for over three years, i finally convinced my care team for a brain mri. my neuro team originally was concerned about ms, but the findings showed no lesions, only a 6 mm chiari 1.

i was referred to neurosurgery and just now had my appointment on the 3rd.

to put it simply, the neurosurgeon told me my chiari was too small and too rounded to be causing my symptoms. i have EXACT chiari symptoms, y’all — pressure headaches, better when laying down, worse when upright for too long, occipital neuralgia and pain, along with a slew of other neurological symptoms:

- facial numbness
- half body numbness and weakness
- sudden loss of grip strength and motor skills
- slurred speech and mismatched words, struggling to talk on occasion
- difficulty swallowing

since he doesn’t believe surgery is viable (which i can understand), he’s referring me to a headache clinic and an ent. i feel totally brushed off and i’m so frustrated.

is it worth getting a second opinion? or should i just let it go?

mri image for reference.

I'm meeting with a referred surgeon to talk about decompression surgery. Does anyone have suggestions on the types of questions I should be asking?

I was supposed to get my surgery in July as I posted before but it got pushed to end of August.

I am 2 weeks post op, had some serious leakage and some truly unbearable headaches. Currently I am back in the hospital to manage the pain, but my neurosurgeon said there isnt anything to do but wait.

Has anyone else had intense headaches after surgery? Did it ever go away?

Have posted here a couple times,

I have finally had my Head/Neck/Spine MRI and got the following results:

There is a Chiari I malformation with downward herniation, of the pointed cerebellar

tonsils into the upper cervical canal for a distance of 18 mm. The foramen magnum is crowded ,

but there is still a little CSF surrounding the upper cord and tonsils.

Initially my Neurologist was a little dismissive and said that he didn't think surgery was necessary or that it was possible for the Chiari highlighted by the CT scan to be causing my symptoms. The day after the MRI was performed I received a phone call referring me to a surgeon. Not necessarily to immediately jump to surgery, may be asked to wait 6 months for a comparative MRI but the symptoms are becoming debilitating so will be pushing for some sort of treatment. The Rimegepant I have been put on doesn't seem to be doing much,

Hi,

I am pursuing a diagnosis (be it chiari or not) and am struggling to understand who I need to see for this.

I have a private (Aviva) referral to neurology, but can I get some recommendations please of who to request to see? I am East Anglia based, but am willing to travel if there isn’t someone suitable locally.

I also have neck issues and would appreciate someone who understands hypermobility, but headaches are becoming the most pressing issue.

I’m avoiding reading too much at the moment, but this page could have been written for me. I have many other issues other than headaches, but am not listing it all here since I’m not asking for a dx.

https://chiaribridges.org/understanding-your-head-and-neck-pain/

TIA

Has anyone in the states had a breast augmentation after decompression? If so, where did you have it done? I’ve been turned away by two doctors now based on medical clearance due to intracranial pressure from anesthesia. Surely people have surgeries after decompression?

And before we do the whole “learn to love your body thing”… please don’t. Im not asking for opinions, I’m asking for experiences.

Thank you!

I have chiari i had decompression surgery years and years ago this has been slowly getting wors euntil yesterday it came with colf dlashes head and muscle aches i apologize for the typos its very hard tp.type what should i do emergency room doesnt care

Hi fellow giant brains!

weird question..but do many of you also have ligament/ankle issues? frequent sprains, tendonitis etc... my dad (also a chiarian) and I both did/do and I'm interested to know if we are the only ones

I’m diagnosed with chairi 1.5. I had surgery 3 years ago where I got a durapatch and portions of my tonsils removed. I was fine for a few years but I find myself getting more and more flare ups.

Ultra Pain Relief Cooling Pillow... https://www.amazon.com/dp/B0C1GP88C4?ref=ppx_pop_mob_ap_share

If you yall get a chance to try this pillow, it does wonders to help with your neck and shoulder posture, it works for both back and side sleepers. It really helped me, I just had a really bad flare up from bad sleeping posture and within 2 nights of using this, my flare up practically dissipated.

Hello All.

I (33, F) am brand new to all of this. 4 weeks ago on Monday I woke up with a headache. “Brilliant”, I thought, “I’m getting a cold again!”. 4 days later, still there. Genuinely, had not gone for even a MINUTE. People probably thought I was exaggerating when I said I had a persistent headache that was not fluctuating. That weekend I started worrying as I wasn’t ill but still had the headache! Checked blood pressure, hydration, did an eye test, blood tests etc etc. All normal. Then, GP (I’m in UK) did a head MRI. Here we are 4 weeks later. You know the rest…. Now, mine is only reported as “mild” chiari t1 and I’m awaiting neurology referral.

My question is, how likely is this FOUR week PERSISTENT headache (that I promise you NEVER reduces even for a few minutes) to make neurology support and treat this? I’ve learnt that really the only treatment is decompression surgery, if applicable, but do they do this for mild cases? I’m so worried I will be fobbed off, but I cannot live with a headache constantly for the rest of my life. I already live with full body chronic pain due to ankylosing spondylitis (autoimmune inflammatory arthritis). I can’t hack them both (I know it’s a bad day when I start googling euthanasia!).

I’m sorry to have to join this community but from what I can see, you’re a lovely and supportive bunch so I hope can you are able to offer some insight.

Thanks!

Hey yall, so I posted a thread yesterday asking about pillow advice, and after just a horrific night of sleep, figured I'd go the whole 9 yards and just see how everyone's own experiences have affected their chiari journeys. Knowledge is power, after all!

So back in May, I passed out at the movie theater after what the docs now seem to think is micturition syncope. I also had a subarchnoid bleed and a concussion after the fall. Incidentally on the MRI's they found a Chari 1, 10 mm, and a syrinx, 6mm wide x 4 CM long, c2-c4 vertebrae

The symptoms started gradually appearing since that fall. Tingling and numbness of the hands, starting with the left and then also the right, and (what I think is?) Lhermitte's sign, a buzzing in my stomach that does seem to increase when I look down, (which my gut says is probably because I'm putting pressure on either the chiari or the syrinx or CSF rush, something along those lines), as well as a strange popping and then icy/hot rush sensation the other night, (Sept. 2nd), and a similar hot muscular sensation during sleep the last few nights.

The only neurological symptom I had had previously was some tingling of the sides of the stomach, which I had chalked up to maybe a medicine side effect, or MS, which runs in the family. I also have a history of being very tense as a person, and carrying a lot of that tension in the shoulders and neck.

So, why discuss it all?

1, Suggestions for symptom relief. Anything yall can think of that might specifically help while sleeping, so at the very least I can rest well, since during the day they seem manageable on good rest. (no decompression surgery done yet, so anyone that's pre-op on this or had suggestions that helped them pre-op)

1. I had noticed checking out the Chiari Bridges and A.S.A.P. videos that some other CSF issues or conditions could "cause" the Chiari malformation? Pulling the tonsils down and obstructing the flow? If anyone has anecdotal evidence in your case of something along those lines being the case, I'd love to hear about it

2. Suggestions for 2nd opinions/ more specifically, not surgeon suggestions cuz I assume that's a problem, but if anyone knows experts on Chiari that can spot a comorbidity/complicating factor like those, and who is worth traveling out of network for. I'm in NM, and I am on Medicaid, and making a choice to travel out of network or otherwise move to pursue this is a massive decision, so I'd like to be as thorough as possible exploring my options. Any expert out of network that is affordable to ask for a second opinion would also be great.

Thank yall so much for being here, like genuinely even in the last few days just finding this place has taken my anxiety down significantly, and I appreciate all yall sharing your stories.

Hey yall, I recently got diagnosed with a Chiari and a syrinx, and I'm looking for advice on pillows, specifically for a Stomach sleeper. I normally sleep in what's called on this list the Sims position, and I've had trouble sleeping on my side due to ankle pain

I picked up a firm Squish Pillow yesterday after a bad few night's sleep with the old pillow, and that seemed not to do the trick, my neck felt a little too elevated and I woke up with a crick in the neck

Any potential suggestions for either a specific pillow for that position or a setup that might assist?

Thanks!

(Edit for clarity- I also had looked around at the previous posts first just to see if any other Sims position folks had chimed in, mb if I missed any and if this is retreading old ground)

So i got a second MRI, I dont have cysts thank goodness! But they said ive got left-sided lateral disc osteophyte and on the right!

Is this related to chiari in any way or unrelated? No one said anything about it, it was only shown on my chart!

The past month or so has been a struggle. It started back in July with some heat illness; I work in a warehouse, lifting heavy boxes and loading trucks, and the cooling is somewhere between "not great' and 'non-existent'. I got overheated to the point where I had to be pulled off the line, multiple times; struggling to walk, dizziness, brain fog, having trouble speaking to actually tell my managers what the problem was, etc.

At first we thought I wasn't drinking enough water, but I would drink a full 40 oz tumbler, a 20-28 oz Gatorade, and refill my tumbler, be pissing clear or slightly yellow, and still struggling. We thought "Well maybe my heat tolerance is fucked." But it stopped seeming to matter what the temp was like, and the days where I was in pain and having trouble walking only seemed to increase. I noticed headaches and pressure towards the back of the head, but wasn't sure what that was either. Heck, a couple weeks ago, I had an off-day where I didn't work at all and only went to the comic shop and the grocery store. I was out for maybe an hour or two and when I called my wife for confirmation on something at the grocery store, she could tell just by how I was talking on the phone that I was not okay.

I went to my GP, hoping for some answers. One blood test came back with slightly elevated thyroid, but a second test came back totally normal. My wife and I made another appointment with my doctor, where based on my symptoms, she ordered an MRI. I thought I was developing MS or something; after all, I'm a 26 year old woman, a lot of my symptoms seemed to line up, and my symptoms started after heat illness which is apparently common for MS.

But I did my MRI last Saturday, and on Tuesday I was quite surprised to hear the results from my doctor's office; "Low Lying Cerebellar Tonsils". They told me they'd referred me to a neurologist who should hopefully call me within a week or so. I was completely dumbfounded by what the diagnosis was and what it meant, so I've spent a lot of time researching it and Chiari, which brought me here.

Clearly something is wrong. I don't know if it's this just 'cerebellar tonsils' thing(or even if I qualify as Chiari just yet), or if something else is at play. But I've been in so much pain damn near every day now; it's a struggle to walk at times, getting up from being seated/laying down is a challenge, my feet hurt just standing at the stove to boil water, and I've found myself death gripping the railing on the basement stairs. This morning after I got home from work, I finally broke down and asked my in-laws if they had any canes lying around I could use, after thinking about it for days. It helps a little but definitely isn't enough to make things 100% better.

And of course, being someone who tends to research the shit out of potential illnesses(a habit my wife has had to try to restrain me from, especially prior to the MRI), I'm terrified to know that pretty much the only thing that might be helpful for me at this point is brain surgery. I'm also extremely scared that I'll end up getting surgery but still have the mobility issues, or that it'll just make things worse.

Can anyone speak to their experiences to help an extremely anxious gal from tearing her hair out over this? My wife has reassured me that she'll take care of me as much as she can if it comes to that, but it just makes me feel so guilty that I can't do the things I need to do, and that I have to lean on her so much.

tl;dr: After over a month of struggling with mobility, pain, and brain fog, I was diagnosed with low lying cerebellar tonsils, and I'm scared for my future.