r/chiari

Physical therapy recommended before surgery? Or even without doing a surgery at all?

Share your migraine tips! I have a few that can provide relief for me, but I'm looking for more I may not have thought of.

Usually I will either eat fries and drink soda, have my boyfriend tell me a story to distract me from the pain, or turn the showerhead to the coldest setting and soak my entire head. Doesn't always work, but may cut the pain significantly. Painkillers don't work for my headaches, neither does sleep.

Have anyone found a solution and stopped getting headaches completely?

Do you guys recommend surgery for 8mm?

Brain tissue removed? Herniation size?

I was 3mm and did not require brain tissue removal (cauterization).

(Edit: in my area ten yrs ago the diagnostic was 3mm - 5mm herniation. I had many classic symptoms and from as early as 3yo. Also tested my CSF pressure and found to be high. Surgery very successful)

I’m almost 2 years post op. I never had fatigue before my surgery, just depression. After my surgery I slowly built up my ability to do things in the following months, but ive noticed that the fatigue improvement plateaued around the 1 year post op mark.

I can’t do weekend long conventions or cosplay as much as I did before. I’m Florida-born, but now I can’t tolerate heat to the point where I have to check the temperature to see if I can even go out. After moving houses recently, I spent half of the week afterward in bed. I can’t go to loud parties or bars without significant accommodations, all of which I could do before surgery.

I’m starting to wonder if I have like chronic fatigue syndrome now from my surgery, because I’m really… tired of this. Did the fatigue ever not improve for any of you?

Hi guys!! I'm currently waiting in pre-op to be wheeled away for my decompression! In my silly little gown and grippy socks.

I'm sooooo nervous, but I hope this will be a new beginning.

Please keep me in your thoughts and wish me luck!! :')

I (27F) am awaiting Chiari decompression, 9mm herniation. I’ve had to work a very competitive remote job and finally gained adequate health insurance this month. My symptoms became severe 2 years ago after having baby- so it’s been a long time coming

A couple weeks ago, after dealing with back to back viral illness, I was bending over to pick something up when I suddenly felt like my head was sliding off my neck. It caused some big autonomic reactions and I went to ER with clear CTA. since this episode, my neck just feels so unstable and it’s really scaring me. All of my surgeons are across country and I don’t even feel safe to travel in this state right now- I am so desperate I’m considering NUCCA to see if it’s possible my atlas rotated or something

Is this completely unsafe? Has anyone had success that has comorbid possible cervical issues?

I have chiari malformation and a potential CSF leak - 9mm herniation. I've recently started experiencing burning sensations, twitching/muscle fasciculations and a sensation that there is cold water gushing around my toes. These all come and go in my feet. Sometimes I get muscle fasciculations in other parts of my body too.

I noticed a couple months ago that I my skin is always red around the cervical area of my neck and am starting to wonder if I could have developed a syrinx. Do any of you get this type of skin flushing? See photo. There are some spider veins in the area too that I think are new.

I've been having severe ongoing symptoms for 3byears now, I can't drive anymore. I have fainted since 11 years old. My last faint I face planted and broke my nose very bad.. since then I have had severe pre syncope bad fatigue muscle soreness and fatigue, dizziness MASSIVE DAILY HEADACHE AT BASE OF SKULL AND NECK shoulder til burning pain, I can't lift anything without severe pain, I lose feeling in my hands and legs/ feet. I get severe cold feet I have severe heat and cold intolerance. My face stays red now I feel like I'm burning in the sun my ANA tests come back negative. They say I have POTS, IST AND OH. I have SVT as well. I do have celiac and endometriosis....

My thing is they finally found lower lying ectopic tonsils less than 2mm ... My neurosurgeon said she won't do the scan to see about the flow in my spine to see if it is being blocked I think I'm saying this correctly until I do two full months of physical therapy which sounds like hell to me with these headaches I get does this sound familiar to anyone I've read up on zero chiari can I have some insight please

Hello there, I was researching a bit on the surgery, decompressing, removing part of the skull and all that, and found this subreddit

My sister has received the news that my 6 year old niece needs surgery cause her cerebellum keeps descending and they don't want to risk waiting 6 more months. The thing is: we are kinda scared. Apparently the doctor told my sister there's a big risk for hemorrhage. I was wondering if anyone has a family member, child to be more specific (I don't really know if it makes much of a difference if it's performed on an adult or a child), who has had this kind of surgery and if so: how was it? were there any complications? was it very painful afterwards?

English is not my first language so sorry if something doesn't make much sense.

Thank you so much

Hey everyone! I was diagnosed with Chiari when I was 7 and had the decompression surgery when I was 8, followed by two brain bleeds. At the time (and ever since) I thought that was it. It’s been 16 years (I’m now 24) and I only found out last year that the surgery is not a complete fix, and it can continue to progress after the surgery. I of course went back to the doctor for a check up and found out I was over 10 years overdue for a scan - what the heck.

Anyway, I’m now on a wait list to see a specialist, but I’m having trouble distinguishing potential symptoms with regular ‘human bodies are weird and poorly designed’ things. I think because I thought for so long that the problem was ‘solved’ and I tend to be a silent sufferer I kind of just brushed things off to the point where they don’t register as a problem to me. For instance, I can almost constantly feel pressure in my head, I get dizzy standing up (or bending down), random tingling or numbness for no apparent reason, brain fog, tinnitus, neck pain, clumsiness - honestly the amount of times I’ve fallen over on video is crazy - and the list goes on.

I just can’t seem to tell when something is normal existence, or when it’s my chiari playing up.

Yesterday at work I got super dizzy out of nowhere and had trouble even walking away from my desk to sit in the work kitchen. The top of my head had a burning sensation and I was extremely lightheaded and trembling for about an hour. Initially I thought it might have been a random anxiety attack (still could be) and tried to focus on breathing and grounding myself, but nothing worked. It wasn’t until I got home several hours later that a connection to Chiari even crossed my mind - but I still can’t tell if something like this is actually chiari related or if it’s anxiety, or anything else. The symptoms seem to overlap so much.

Does anyone else have trouble differentiating between chiari symptoms and anxiety or just normal ‘bodies are weird’ things? Am I just gaslighting myself into thinking this could all stem from chiari?

Female, 32 years-old. History of Chiari I malformation
treated with suboccipital decompressive craniectomy and C1 laminotomy
on 11/06/2025.

I had my follow up after surgery at UPMC Pitt. I was operated on my FRIEDLANDER MD, ROBERT. Who is no longer there, so when I do my follow up appointment in a week it will be a whole new Dr. I got my MRI results through the patient portal. Everything looks unremarkable except this portion of the report:

"The ventricles, sulci, and cisterns are age appropriate. There are
areas of FLAIR nonsuppression within the left temporal and occipital
lobes which appears similar to the prior exam, favored to be
artifactual There are foci of blooming susceptibility signal within
the inferior aspect of the posterior fossa to the left cerebellar
hemisphere which may reflect foci of pneumocephalus versus
hemosiderin deposition."

The concerning part for me in the pneumocephalus. I looked it up and seems to be unusual for this far post op? I'm wondering if it is corelated with the symptoms I have been having. I have had this rice crispy (snap, crackle, pop) sensation since before the surgery. I will get a headache and if I rotate my head and stretch my neck I feel a "popping" and then will get relief. I also still heavily feel my "coat hanger" tightness in my neck and shoulders. I have messaged the team about this before and I get brushed off and was told to wait till my 6 month follow up. I still heavily feel the burning sensation in my face and body when I overexert myself (which isn't much) or when I am hot. I still get intense pressure when I bend over, squat, lift, or there is a change in barometric pressure not as bad as preop but still there. Overall my quality have life has improved but you know its my brain, so I worry.

Am I being paranoid?

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I (25 afab) just got diagnosed with Chiari Malformation Type 1. I read the handout my doctor gave me, and I've been looking at a lot of the sites people have shared on here. I'm not gonna lie, I'm pretty scared. I'm pretty sure my descent is 10mm (the results were a little confusing to read but that's the number I saw on there), and I read that's mild to moderate. I've been having daily migraines/headaches, so they found it in an MRI when looking for possible migraine causes.

I'm gonna see a neurologist and neurosurgeon soon (early June it looks like). Any advice? I don't even know what to ask them, or how to process any of this. Am I going to be okay? Just trying to gather as much info as I can at this point, I guess. I don't know how to feel.

Hi group. Can someone explain this.

I have chiari. Male 35years old. I was decompressed 11 years ago.

My brother has just been diagnosed with it and to my suprise my 3 other cousins have also been diagnosed with chiari

Someone mentioned to me that its not only chiari thats likely running through your family it actually could be EDS. Which is causing the chiari.

Does this sound right?

After the surgery (May 7th) as a 15yr old male I am making a great recovery now only everyone in a while needing 1000mg Of Tylenol. First 3 nights are no joke I was in the worse pain I had ever been in my life. I have been waiting for this surgery since August. I had a decompression of the spine? I think that is it. My headaches are much less. I am more balanced on my feet. My doctor told me I have more blood flow going to the fourth ventricle of my brain and that helps with my coordination.

I have recently have had mri’s showing I have a chairs malformation of either 6mm or 8mm (depending on the mri).I have symptoms of neck pain, headaches , arm , leg, and face numbness, severe tinnitus, and extreme fatigue. I also had a cine flow study which is showing blockage. I have an appointment with neurosurgeon in 3 weeks, has anyone ever had blockage and they not recommend surgery?

Hi there, I thought I would post my journey to decompression surgery and healing from start to finish in case it helps anyone out there.

I was diagnosed at age 12 after developing very bad headaches. Nothing more was done regarding my diagnosis, and I had forgotten about it until I reached the age of 43.

At age 37 I developed frequent fainting spells and got all sorts of tests on my heart etc. I would almost blackout when I stood up getting out of my car upon arriving to work and my whole body would shake and my eyes would black out. I would have to sit down in order to settle things down. This dissipated after a while but when I became stressed I always had the tendency to get the fainting spells again.

At age 43 I started to feel very stiff over my whole body and tripped quite frequently. I thought it was just due to clumsiness or getting older. I also would get occasional dizzy spells like I did before but not as extreme.

At age 44 I fell very badly in my shower and hit my head on the side of my sink. I needed stitches and got a concussion. After they scanned my head at the ER and told me I had chiari malformation I thought I would look into whether all these symptoms might be connected.

I read that syrinxes can develop in the spine and decided to look into this further. I wrote a letter to a local neurosurgeon and said I wanted to get my spine scanned as I suspected I might have a syrinx.

Lo and behold the syrinx in my spine ran the length of my spine but was widest in the cervical and thoracic region 18mm at the widest portion. Needless to say it was giant.

The neurosurgeon said I should get decompression surgery sooner rather than later. I scheduled it for 08-05-2025.

On the day of the surgery I remember being wheeled into the operating room and there were about 20 people in there. It was wild. When I got my knee surgery there were like 3 people in the operating room.

Laminectomy on C1 and partial C2, Dura patch harvested from my own body, craniotomy, opening of the obex, cutting away the cerebellum from the arachnid adhesions.

After surgery I developed some very serious complications. I was in the hospital for 6 weeks.

Aseptic Meningitis, pseudomeningicele (subsequently manually drained), severe papilloedema caused by high intracranial pressure. Twice I opened my eyes in the hospital and everything was upside down.

I was put on acetazolimide to help with the increased pressure and then slowly weaned off of it 3 months ago when it appeared my ICP was going down.

It has only been since february that I have noticed a benefit to the surgery. I have felt less stiff, and have been able to read a 500 pg book every two weeks. Before I struggled to get through one book a year. I have been devouring books as my attention span and ability to keep engaged has monumentally increased. I don't feel like my body is in constant fight or flight and I don't feel those fainting spells.

My syrinx has shrunk by 1/3.

My question. Has anyone had the same benefit of being able to read much more prolifically and think much clearer than before?

So I learned something last week that really made me want to throw my whole brain in the trash. Back in 2010, I had Chiari malformation decompression surgery. At the time, I was told that if I made it six years without issues, the chance of recurrence was zero. As in: "Congratulations, you’re cured, go live your life.”🥳

Fast‑forward to last week: I end up in the hospital with stroke‑like symptoms, and guess what’s back?

Recurring Chiari.

Cue the sad medical trombone.🪊

I’m not doing another surgery. For one, I’d have to rob a bank. For another, the first one left me with lifelong neurological side effects that make the original Chiari symptoms look like a warm‑up act.💃

My main souvenir? Closed‑eye hallucinations. Not psychosis — just my brain running a bootleg IMAX behind my eyelids whenever I’m stressed. I’ve seen everything from a full‑sized tree growing in the middle of my room, to a red‑eyed cartoon rabbit, to an entire civilization rising and collapsing on my bedroom wall like a time‑lapse documentary. I’ve even seen a “different place” through my closet door, which was rude because I didn’t get to go there. And of course, the classic: catching people‑shapes in my peripheral vision like my brain is auditioning extras.🎥

They started right after surgery and never left. They’re stress‑triggered, familiar, and vanish the second I focus — very much in the “neurological glitch” category.😜

And apparently this might be genetic, because my mom had pseudotumor cerebri. So thanks, Mom. Love the family heirlooms.💗 (I love you too Mom but jeez. Couldn't we have gone with jewelry? About to call a family meeting!😘)

Anyway — has anyone else had Chiari recur after the “it literally can’t recur” window? Or long‑term neuro weirdness like the closed‑eye hallucinations? When I had my surgery, the internet was basically a tumbleweed and a forum post from 2003, so I’d love to hear from others.🥰

I hope no one finds my take on this offensive. It truly is laugh or cry right now, and I'll be damned if I'll let this new chapter in my life win! 💪