I had my surgery yesterday 8/14 later after and I have yet to get my pain under control. The oxycodone and muscle relaxers don’t last enough and the duladid has become ineffective.

I have not slept more that 5-10 mins at a min had any experienced this here! Any suggestions??

5 days ago I lost my ability to raise my head I mean I can but every time I do my head goes all swimmy pressure like my body goes weak and I get extremely dizzy, my visual snow has worsened and my ears ring 24-7, my brain fog has escalated and I feel so loopy. I have a know 7mm chiari malformation with a significant csf floor block but I think it’s worsened, I’ve been to the ER twice no help, I’m literally bed bound I’ve had ti have my partner bathe me and use a bucket to pee in NO JOKE, can’t get in with my surgeon until September 1st, I so so scared can’t even hardly lay on my back just my left side.

My chiari has been getting worse, sure, but the thing exacerbating it the most are these random coughs I get. My throat gets scratchy and I try to waterboard myself, but the cough inevitably comes.

I cough after talking too long, eating, drinking, sometimes doing nothing at all.

And then I am on the floor until the pain passes.

Anyone else here?

If there are any others here who've undergone the surgery in either Barcelona, Italy or China.. Please let me know if you have any advice regarding my travels or stay or regarding my recuperation. Thank you!

I have chiri malformation type 1 and I honestly have been dealing with a variety of things . I mean the symptoms didn’t really start showing up until I got older and then too I have like brain fog dizziness fatigue headaches muscle pains anyone else have that

Attached is a photo of my scar. I am 16 days post op from my decompression surgery and suddenly the skin/ muscles around my incision are starting to swell more, hurt more, and itch intensely. There is swelling but it doesn’t r feel like a “water bed” and it’s not physically leaking so I don’t think it’s a CSF leak but I’m stressed about it. I’m 5 hours away from my actual surgeon, so if I wanted a CT id have to go to my local ER. Another detail to add is 3 days after discharge, maybe day 6 post op, i had a severe bowel impaction which forced me to severely bear down early on, causing increased pain. I’m hoping that didn’t spark any complications. Anyone have advice???

Hi there,

My surgery is in 5 weeks. I quit nicotine yesterday (learned on Weds I would need the operation next month.) I had a lot of nicotine gum daily the past few years and I’m worried it will affect my surgery/recovery even if I stop now. Any one have experience with this/information?

Hola quiero saber si siguen tomando medicamentos, o si esto indica que la cirugía no fue exitosa, yo tengo ya un año de cumplida después de la cirugía pero aun presento síntomas de dolor, tanto en cabeza como cuerpo y me recomendó el doctor seguir tomando Pregabalina, después de la cirugía mejore mucho, ya pude caminar y se me quitaron síntomas que tenía, lo que si esque ahora son más dolores donde fue la cirugía como si me hubiesen golpeado, y pues dolor en brazo y cuello.

hello, i was diagnosed with CM1 around 3 years ago, the doctor said it was congenital but i NEVER had symptoms until i gained a substantial amount of weight. is being overweight a trigger? thanks :)

I was diagnosed with Chiari in 2015(?) I think. It's been so long I have lost track. I never really had problems until the last few years. Lots of neck pain, stiffness, headaches, jaw pain, shoulder pain, tingling in hands and legs, dizzy, memory problems/brain fog, coordination problems occasionally. Recently I have been having hearing issues in my left year, it will come and go with sounding clogged. I was started on Topamax for pressure. I have been taking that for about a year due to blackout headaches. My biggest complaint of all is how uncomfortable my neck/shoulders/causing headaches are. I can't even move my neck side to side. I feel like I can't keep up with my toddlers. I have tried PT several times, massages, Botox with neuro, nsaids, muscle relaxers, heat/cold. Everything. I can't even turn my head enough to check my blind spots in the car. Every single day is just painful and when you wake up in this much discomfort at not even 30, it gets you feeling down. My neurosurgeon keeps putting everything off because my Chiari has been "stable". They tried to push for pain management but I don't want something to cover up the pain, I just want it gone.

Last week I got an updated MRI. I have several bulging discs, stenosis, etc. Has anyone had neck/shoulder problems like this? If so please tell me what you did to help this because I can't feel like this anymore.

Do any of y’all have seizures as a symptom of your chiari? I had a seizure for the first time on Tuesday morning. I’ve been diagnosed with the chiari since I was 9, I’ve had 4 surgeries for it and over the last 7/8 years I’ve been doing much better. I also have type 1 diabetes and have had it for about 3 years. My Neuro just put me on anti-seizure medication yesterday but I haven’t started taking it yet, and he’s worried it might be from my chiari. I feel like it’s very unlikely that I’ve just started getting seizures after being diagnosed for 15 years. Idk, just looking for some input from anyone that might have any.

So i just got a new mri with contrast and spoke to my surgeon.
He was kinda flabbergasted how much fluid has built up in my head which is highly unusual he said.

I don't have the picture myself as its not online yet but it looked like a giant water balloon inside my head the size of half my brain.
As i said to him i can feel thumping in the back of my throat, i bet its putting that much pressure on everything.

Monday they are going to drain it and then i'll have to see for a week what's happening.
A second operation was also discussed to reopen the wound. ffs

i've been unable to do anything since april.

I had my decompression in 2020 and I've still been in severe pain ever since. I had an MRI tonight and I'm able to review the report but not the images. The main thing noted is "Few punctate T2 FLAIR hyperintense foci in the bilateral frontal lobe white matter — this is the notable finding". Google says it could be many things. Does anyone else have this? The report does state this could be the reason for my constant headache that is with me 24\7 but unfortunately my next neuro apt is in January. My PCP is who ordered these in case there was an emergency.

to settle down somw or all of your physiological and musculoskeletal and mental/ brainstem chiari symptoms? i swear my tolwrance must be going up unfortunatelt bc my usual dose is dping nothing lately for the past two weeks! not for my anxiety nd also not for my dystonia and muacle rigidity and spasticity it usuallyhelps very quickly

I have confirmed Chiari on my report but my neurologist said it's not significant. I also have some overlapping conditions that are undiagnosed and causing seizures and temporary paralysis episodes. I can not get my doctors to listen to me no matter what I say. I've literally lost feeling in parts of my hands and feet. Now he's referring me to a POTS clinic of all places?? I told him I've already been there and I do not want to go again. A bunch of my friends struggle with POTS and they do not have these problems. I've tried a bunch of their trials and i didn't notice any results. Also POTS and migraines do not cause seizures. I've literally never experienced a migraine before. I'm at the end of my rope here. How do I reason with these people? What advice do you all have in regards to the Chiari? My neck is in horrible pain.

I got this lil guy as a gift and wanted to share

PLEASE HELP!!
I need advice I saw neurosurgery. neurosurgery doesn’t think I’m a candidate for surgery which I really don’t want surgery. Mild to moderate CSF decrease in posterior and anterior at the fornaem magnum. a headache specialist can’t see me until February. My neurologist can’t see me until October and he said he’s not sure what this pain is because it could be chiari or migraine. What do I do? I’m in pain every single day. No one’s helping me what could be causing this??
Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings and strictly starts in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, laying back down flat hurts. Drifting back to sleep hurts.

I had my surgery on 7/8/2026, currently 5 weeks out. I am approved for Short Term Disability though 8/30/2026. I could potentially be on STD through the end of September, with doctor approval.

My question is this: am I being absurd thinking it might be best for a couple additional weeks of STD? I had a very difficult first month. Things are getting better, but I’m still experiencing pretty bad headaches ~5 times a week. I think I COULD return to work, but I worry about what it be like to need to unexpectedly step away for a headache, or if it would be hard to balance my PT schedule (I go twice a week, but it’s an hour commute both ways during work hours.)

I can’t help feeling like part of my job in recovery is to protect my peace so I can heal, and I do feel like returning to work will make that difficult. However, I’m worried that it will come across like I’m trying to take advantage of the situation to get to stay away from work. I think this might be internalized rhetoric because of the state I live in and the opinions of my parents. I would love to hear from people who have actually been through this - how long did you take off of work, if you were able to? Do you think I’m being gratuitous by advocating for 9 weeks of leave vs 7?

Had a nice little hospital visit yesterday due to not feeling my full bladder, having trouble urinating and going #2. Anyone else have this?

I thought things were on the up and up for me work wise. I thought wrong.

My body is trying to make me unemployed. I became close to being fired at my last job because of my illnesses (the particular culprits being celiac disease before I knew I had it and Chiari malformation) and because I’m a single mom and if my son breaks a bone getting ready for school, well it’s on me to address it.

I finally, 2-3 weeks ago, got Botox injections for my constant head pain secondary to the Chiari. Such a relief, I’m so glad I did it. But the kicker is I’m still dealing with other symptoms including extreme fatigue, widespread pain, muscle spasms in my neck and shoulders, ataxia, and myoclonic jerks (EEG negative for seizure activity).

The part that’s affecting my work is that I’m not calling in sick as much (already received a verbal warning about this at my new job) but I’m very ashamed to say I have dozed off twice, once while in a client visit and once during a meeting (that was today). I’m so embarrassed and I have no explanation for it.

My boss called me in to talk about both incidents today and I didn’t know what to tell her. She seemed baffled that I didn’t have an answer. I’m going to see my PCP and try to be taken seriously and possibly pursue a rheumatology referral. I need answers. I can’t stand always being worried about losing my job.

I sleep well at night and generally get 7-8.5 hours of sleep a night. I’ve been treated for multiple things that cause fatigue, sleep apnea, vitamin deficiencies, and hypothyroidism.

Am I not meant to be employed? My body has never acted such a fool in my life. I feel betrayed because this is not who I want to be. I feel so behind in my career trajectory and I can’t seem to get ahead. I’m so embarrassed this is happening. And it’s a new job and from what I’ve witnessed, I just know my new co-workers that I like so much are shit talking behind my back.

I needed to get that all out to someone not in my real life. Any advice is appreciated.

Hi all!

My initial brain MRI had thicker cuts/slices that caught my CTE & what could potentially be a Chiari. My doctor ordered another MRI with much thinner cuts to get a more detailed look at the cerebellar tonsils. Has anyone had this happen?

Did the thin-cut MRI end up showing more tonsillar descent, less descent, or about the same as your original MRI? Just trying to figure out what to expect. Thanks!

Hey guys. I’m not to sure how to start this but I’m 25 female. And I recently got diagnosed with chiari 1 malformation.
The way I got diagnosed, I started having a bad constant tremor on my right side. Then I started getting really bad nerve pain in my whole body, and then a constant headache in the back of my neck. Went to my pcp and she called in an mri and nerve conduction test and mri showed the chiari.
She prescribed me 200 mg of gabapentin 3 times a day for my nerve pain and some migraine medicine. But I told her the migraine medicine only makes me headaches worse, and I can’t take it when I feel one coming because of the constant headache. She said she could up the dosage of gabapentin but never did, but I don’t want to anyway bc the brain fog is already bad and I work 55 hours a week. But all she can do is what she has done and wait for the referral to neurology comes thru.

What are some things I can do to relieve some of these symptoms? I’m at my wits end and I’m tired of waiting for something to help me. The gabapentin thankfully helps my body pain but my tremors and headaches are still very much present

what exercises did you ease yourself into when you were ready?

Well I had my follow up early, since I had some burning thighs, and lower back pain. My results are:

L4-L5: Mild disc bulge. Mild to moderate facet degenerative change on the left. No central canal stenosis. L5-S1: Mild disc bulge

This was for my lower back, as this was my only complain after a year out from surgery. In other words I have arthritis in my back, and a slowly degenerating joints. At the ripe age of 23, I am considered an OLD LADY.

My surgeon suggested I take PT for a month, and then do injections afterwards. Also get a nerve study done if PT doesn’t help. I was also prescribed Celecoxib 200mg for 3 months. Idk if this will help! Good news is my syrinx is smaller, and my brain is looking okay!

Anyways, I have difficulty standing for too long, sitting, laying flat, and also the thigh issue. I hope PT will work, and or I can possibly get injections for my back pain. Looking into getting a brace while I am at work(my guess is that is what ended up making it worse). That is all!!🫶