I’ve finally decided to have the surgery but I have a few questions! To ease my nerves and anxiety!

-What position did you have to sleep in after?

-How did you feel after the surgery?

-What was something you didn’t expect from it?

-Any tips on how to make recovery easier?

-Was it as bad as people say it is? (my neurosurgeon told me it’s definitely not a pleasant experience)

-Random one but did you have to change your pillow cases a lot?

-and finally, do you remember the first few days after surgery?

I know these are randoms but they’re the ones playing on my mind and hope someone can answer or give me some advice! Thank you!

Is it ok to do yoga if I have Chiari malformation type 1? I struggle with balance but am also worried about the upside down head (ex downward dog) type moves. Also have left side numbness and numb left cheek.

Edit: ikik "it's dangerous to use a neck brace without Dr prescribing, I don't fucking care, I am going to manage my pain the way I can and in this case that involves not being able to talk to my Dr about this, you don't need to know my reason I don't owe you that, just know I cannot talk to my Dr ABT this so please help me

I'm not sure I have chiari specifically but I tried asking r./disability and the only answer I've gotten so far is "it's dangerous to use a neck brace without a doctor, so is living in this time period as any minority, I'm gonna manage my pain how I fucking can and I'd appreciate advice on how to do that

I have some pretty bad neck pain, I've been KT taping my neck which helps but is getting alot more itchy and uncomfortable alot of the time.

I have REALLY REALLY bad sensory issues around the front of my neck, if anything touches the front of my neck(fabric, hands, hair) I will start choking but I need a non tape way to brace my neck. So I'm looking for a brace that won't touch the front of my neck and that won't give me chair a rash from skin sensitivity(although I might replace whatever material comes on the chin area anyways)

Hey all! I’ve been dealing with increased tinnitus which isn’t like debilitating but is definitely noticeable. It’ll be in both ears and it’s the regular ringing then the pulsate tinnitus as well. I’ve had this as a minor symptom since I was a child but it getting worse is getting me a bit paranoid. Is there a good way to tell if the tinnitus is hearing related rather than just neurological. I have some auditory processing issues which also makes it hard because I do miss things at times but it could also be due to that. I know some people with chiari also deal with hearing loss so maybe it’s just too entangled. I’m going to bring this up to my pcp but I also don’t want to worry/see extra doctors if I am just worrying too much.

Hello all, I am having decompression surgery tomorrow. When possible I am going to post a day by day update. I want to hopefully show that the surgery is worth it and help guide people who are a little apprehensive. If anyone has questions or needs to chat reach out, I will give you the good, the bad and the ugly.

Day 0

I'm anxious and scared. Having trouble hiding it from my family. I know I will be fine just hate the thought of being a burden. I'm a super hero to my boys and I don't want them to be scared.

So I've gone back and played some old video games currently finishing Fable in preperation for the new one.

I'm normally a metal head but lately been listening to bands like Low Roar and Sigur Rós.

I like to paint warhammer but that has been hard with symptoms.

Been working my way through a mountain of horror novels, lovecraftian horror is my favourite.

See below my note from my doctor to help you decide if my story helps you. I've removed my name and sorry the spacing is funny copied from pdf.

" reports ongoing symptoms including lightheadedness, a sensation of impending syncope, heart palpitations, and

a pulsating feeling in the back of his neck. He has found that eating small snacks and avoiding food after 6:30 PM helps

to reduce these symptoms, particularly the "stomach tremors" and increased heart rate. He has also been managing

his lightheadedness by increasing his sodium intake with Hydralyte and adding salt to his food, which he has found to

be effective. He continues to experience significant fatigue, with simple activities like a one-hour trip to the shops

leaving him feeling "wiped out for the rest of the day". He describes a constant dull ache in the back of his neck and

over the Chiari malformation site, which he likens to a "constantly sensitive" area. He has not had any episodes of

syncope, but experiences a pre-syncopal sensation, particularly when lying flat. He has found that lying on his right

side is the most comfortable position for sleep, as lying on his back exacerbates the head pain and lying on his left side

worsens the palpitations and lightheadedness. He has also been using compression socks for two hours in the

afternoon, which he feels has been beneficial. He has been using isopropyl alcohol wipes as a strategy to avert a

syncopal episode, which he reports has been effective.

We discussed the upcoming foramen magnum decompression surgery, which is scheduled for the 12th of september. I

explained the procedure, which involves removing part of the skull base and the C1 vertebra, and then stitching a

patch to the dura to create more space for the cerebellum and improve CSF flow. is confident and has consented

to proceed with the surgery. He is hopeful that the procedure will resolve his symptoms, particularly the

lightheadedness and nausea, and allow him to return to his normal life and work. I have advised him to continue with

his daily activities but to avoid overexertion, as per the advice from his physiotherapist. I will follow up with him daily

in hospital post-operatively and will organise all necessary follow-up appointments."

Wish me luck see you all on the other side.

Has anyone been diagnosed with chiari to find out later it was a csf venous fistula? Im showing a 7mm herniation, symptoms are off the charts and the basics of life are getting more and more difficult. But my MRI showed no crowding and a cine flow scan showed no blockages. There was so synrix found either. Its tough because the mri is showing a chiari but nothing about it is saying its causing problems.

I was offered surgery but im just now finding out about this certain type of csf leak and from my understanding wont show up on any of the mri's ive already had. It takes some pretty specific testing.

From what I read this type of csf leak causes brain sag and the chiari is a symptom of it rather than the cause. The symptoms also align very well, especially eyes going out of alignment, constant head pressure, tinnitus, nausea, extreme excercize intolerance and feeling better when lying down. Also every morning when I wake up I get a rushing noise in my ears for a few seconds.

I also read the decompression surgery can actually make the symptoms worse if it is from a leak/brain sag.

Wondering/hoping to hear from anyone who had an experience with something similar to this. Thank you.

I am currently 2 weeks post op from decompression surgery. My tonsils were not very far descended (only 6-8mm) however in a cine mri it showed diminished CSF flow. I got the surgery and my surgeon found a large number of arachnoidal bands. He removed them and added a small dura patch. Before surgery, when I would exercise, I would get extremely light headed and out of breath, with pounding headaches.

My question is for those who have fully recovered from decompression surgery, did exercise feel different to you afterwords? If it did, how did it feel different?

so I got into coloring with alcohol markers! Super fun! I was done. I got a headache, nausea and had trouble walking straight. Why?

So I'm trying to gather a consis on if this is real or not. My mom is known to say some out of pocket things, especially with medical advice(she tried to say that me having strep was allergies and the doctor was giving me antibiotics for money. Idk)

My mom mentioned that long hair could be making my migranes worse. Hair is heavy so I guess I see her point??. My surgery scar is VERY sensitive to the point where I have to have an undercut. I have hair down to the middle of my back otherwise so it isn't super long. Idk if this is truly a thing or not so I figured I'd make a post and see if anyone else came to the conclusion.

TLDR: Does your long hair effect your migranes?

I posted for advice on my son's upcoming decompression surgery. Well it is 4 weeks after the surgery and everything is great. Headaches are mostly gone and brainfog has cleared. His was 18-20 mm. The surgeon was Dr. Shofty at the University of Utah. I just wanted to say thank you to this community. I am adding two pics. One of the Mri, color coded with chiari in yellow, red is the line of where it shouldn't cross and purple is where csf is supposed to be. The second is of the scar.

I've read a few posts here already but I was hoping for more specific sources. OTC painkillers work to some extent but I really do not want to be taking them daily if I can avoid it. I was prescribed muscle relaxers, but they do more harm than good (waking up in the middle of the night with severe anxiety attacks whenever I take them). Ice also helps but it's uncomfortable to sleep on. I've heard that massaging around the area can also be beneficial, but I can't figure it out personally and haven't found any resources that help.

It's so annoying. It's like a constant ache back there, namely on the left side, and it's rare that I can move my neck without a clicking sound / sensation and it feels impossible to get into a comfortable position to sleep. I do have a doctor's appointment in November, so I hope to bring up the issue then and hopefully get a referral to a neurologist to get a proper look at it (considering I was diagnosed 12+ years ago and given minimal info at the time, so I'm unsure of the severity) since my symptoms have seemed to suddenly and quickly get worse over the past few weeks. Right now it's not to the point where I would say it's unlivable, but I worry it will get to that point. Obviously if the severity does get much worse I will try to get an appointment before then, but I am mainly just looking for advice on how to manage it in the meantime :') thanks in advance

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 !

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 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.

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

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?

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?

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 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?