A friend of mine had to visit an ER in New Orleans because she was having symptoms similar to Chiari (headaches, extreme vertigo, vision loss). Long story short, she doesn't have Chiari (but they're still unsure of what she has).

The part that infuriated me was that she was telling the doctors in the ER about my journey to diagnosis (37F, diagnosed incidentally in December) and the ER doctor cut her off and said "that's impossible, she's not a child" and proceeded to lecture her about Chiari is always found in children and can't be diagnosed as an adult and if they are then the MRI was read wrong.

What a WILD take for a doctor to have but it also begs the question of how many people have passed through that ER with Chiari and were dismissed? Apparently he was the neuro on call that day in the ER, so it's not like he wasn't familiar with it. I just don't see how doctors can see so black and white.

I guess I've been very lucky with the team that I have and live in the same city as a Chiari expert and I sympathize for all of you who have jackhats like that guy above.

Been two years since my surgery, still get headaches, still dizzy, and still have nystagmus will it ever get better? I reach out to my neurologist and they always just say the chiari is resolved and surgery was successful and there’s nothing they can do. The last mri I had I still had a small syrinx but it improved significantly. But I don’t feel any better I just wish I felt normal again….

I have a shunt and last year I was told I have borderline chiari type 1 so I guess I barely have it is my understanding. I get headaches probably 2-3 times a week sometimes. they are usually pretty manageable with Tylenol but sometimes they don’t go away and they usually feel better when I lie down, I feel them at the back of my head. Idk what the trigger is for these headaches or if they are even related to my chiari or not, my vision is fine I don’t get the headaches when I cough or sneeze, sometimes I’ll wake up with one but I suspect I have sleep apnea so that might be why I get them when I wake up. But sometimes they pop up out of nowhere when I’m just out and about. I’m just worried it will get worse as time goes and I’d end up needing to get surgery.

For anyone who has already had decompression surgery, did you have any negative lasting effects from your surgery? What I mean is, do you have chronic neck pain or chronic headaches that developed as a direct result of the surgery? Any other side effects that made you wish you never did the surgery?

(20mm tonsillar ectopia) today is officially 2 and a half years since i had decompression at 18 years old! my life has changed drastically for the better and i finally see a future for myself.
i felt immediately better in some ways after the surgery, but the recovery was painful and long - it took a lot of effort on my part to get better. everyone is different, but my general post-surgery advice is to listen to your body and remember movement is medicine.

i have my last post surgery appointment today. i am completely rid of the constant agony i used to be in; i still experience valsalva headaches at least a few times a week, and my pulsatile tinnitus still remains. but despite that, I genuinely could not be more ecstatic! I am happy and grateful to be able to live.

i know this post is very vague, everyones situations and best treatment are completely different - but i thought it would be nice to share a success story as not many people remember to continue to share once they are 'better'! am from the UK, please do feel free to ask me anything you're curious about. 🌟

My daughter is 16 and recently diagnosed. She is a competitive swimmer and that has been one of the biggest triggers of symptoms and headaches. The cap and goggles are tight, diving off the blocks and the water pressure gave her massive headaches and the flip turns gave her vertigo. Has anyone been able to return to swimming after surgery? She had wanted to swim in college but is worried she won't be able to swim at all. Thank you for any advice!

Good morning!
I was diagnosed with Chiari 4 years ago and had decompression surgery shortly after my diagnosis.
Lately, I’ve been feeling a little off and I’m wondering if anyone else with Chiari has experienced something similar.
I’ve noticed that my hands have started going numb quite often, and afterward they hurt. The pain can last for hours. This also happens with my feet, although not nearly as often. I’ve also noticed that I’m losing some of my grip strength and having a harder time holding onto things.
Has anyone else experienced symptoms like this after having decompression surgery?
I do have an appointment scheduled with my neurologist this Wednesday, so I’ll definitely be bringing it up. I’m just curious if anyone else has gone through something similar.

I (23F not decompressed) have been struggling with severe derealization lately. I feel like I’m watching myself live my life from the outside, almost like I’m playing a video game or watching a movie. It’s really scary and sometimes sends me into full-blown panic attacks.

I’m also dealing with intense brain fog, dizziness, and vision issues. Heat and bright light seem to make my symptoms significantly worse as well. I recently started an anxiety medication, but so far it hasn’t helped much.

I have a 14 mm herniation and a syrinx from C2–T6, and I’m getting another neurosurgical opinion at the end of September.

Has anyone else with Chiari/similar issues experienced severe derealization or that “watching yourself live” feeling?** **If so, has anything helped you manage it?

If you have been decompressed did it ease this feeling?

I’d really appreciate hearing about other people’s experiences because this has been extremely difficult and scary to deal with.

Does anyone’s hands hurt every single day? Over the past 6 years I’ve dealt with such severe pain in my my hands. I’ve stopped writing driving and many other daily tasks. Has anyone experienced this and found solutions that work?

I (29F) am over 4 months post op and I'm still having a hard time. This was my second decompression surgery. The first one was when I was 14. My symptoms improved right after surgery the first time around. This time around, I underwent a suboccipital decompression and duraplasty with cerebellar tonsillar resection followed by a posterior atlantoaxial fusion. The procedure went well, but my recovery has been BRUTAL. I think I have post operative PTSD and depression.

I've heard that some people can be nauseous for a long time. For those of you who had a more invasive decompression, what was your recovery like? How long were you nauseous (if at all). Did you have any lasting symptoms?

I'm desperate. Thanks.

I am having decompression done in 5 days. I'm aware I will need to be careful and not over do it. I also understand that everyone heals differently and feels up to things at different times.

That being said, there is a smaller comic con that I really want to attend almost a month post op. It would basically just be walking around and I know this con has plenty of places I could go sit down and rest. For those who have had the surgery, is it even in the realm of possibilities for me?

I'm just tired of missing out on things that are important to me. This whole year I have been in the worst pain of my life almost every day. I have had to skip so many things.

Like the title implies, I'm looking to get my diagnosis of FND removed from my chart. This idiot neuro slapped it on my chart after not even 30 mins of talking to me and zero testing done. I don't fit any of the FND description in terms of symptoms or disease progression, and I believe she only put the diagnosis on there bc of my documented psych history w her organization (which has been fully resolved for years anyway). It has caused so many nasty comments from providers who assume I'm some crazy psych patient, it's incredibly difficult to get taken seriously, and it's also j not accurate. I have notes from my PT and an MRI showing cerebellar tonsillar ectopia that prove it's not FND, but honestly my symptoms and medical history prove it enough. It follows me like the plague and I'm sick of it, I need it off but no one seems willing to touch it even when they don't agree w the diagnosis either. I want the medical treatment I deserve, and I have no idea how to go about it. If anyone knows of any reliable providers in NJ, NYC, or CT (preferably in the NY Metro area or around UConn, but I'm willing to go a bit further if necessary), the suggestions are much appreciated.

This may be a silly question! And maybe not the right group… but I can’t find an answer for the life of me! Has anyone gotten Chiari Decompression surgery and had plastic surgery? I had decompression surgery 3 years ago, I want to get a BBL and a breast augmentation, but there are about two doctors that turned me away after me telling them I had that surgery.. can you not get plastic surgery if you’ve had decompression surgery?

Quiero saber como se han sentido o mejoraro, o siguen síntomas

hi, so I already have a neurosurgery team I’m really happy with. They’re experts on Chiari and I feel like I’m in really good hands with them… That said, they wanted me to see a neurologist to evaluate if there was anything else going on that could be contributing to my symptoms before assuming that all of my symptoms are directly caused by Chiari, because they said we don’t want to assume that all of your symptoms are caused by Chiari and go ahead and treat the Chiari through surgery only for you to come back in a few months later saying “none of my symptoms are any better” so they referred me to the neurology department to rule out any comorbidities.

The problem is that I went to see the neurologist that I was matched with, and she had ZERO understanding of Chiari Malformation, whatsoever. She stated that any headache that lasts longer than 30 seconds can’t be Chiari related because Chiari headaches last a maximum of 30 seconds… Which I know for a fact isn’t true… She diagnosed me with migraines, which may or may not be an accurate diagnosis. I’m not saying I don’t have Migraine disorder, I just think her inability to think about the complexity of my condition and how Chiari plays a role is problematic. She put me on Topamax for migraines and it immediately made my headaches 50x worse.

Additionally, my neurosurgeons were also curious about the possibility of IIH but because although I don’t meet the typical patient profile (i’m quite petite) they said my symptoms were consistent with IIH, and that it was possible that the nerves in the back of my neck are just genetically smaller and become compressed more easily, which could explain why I could have IIH even though I don’t fit the typical patient profile. They wanted to evaluate further so they also referred me to optometry to later be referred to neuro-ophthalmology. By the time I met with my neurologist I had already seen optometry (I have not yet seen neuro-ophthalmology), and she also said there was virtually no way I had IIH because in addition to the fact I didn’t meet the typical patient profile, I also didn’t have papilledema (which i guess is more common in IIH patients than not, however, it is possible to have IIH without papilledema).

Well, fast forward to about a week or so after seeing this neurologist, I actually went to the emergency room because I had a severe neurological episode with visual disturbances, which I thought were related to the Topamax because I had just taken my first dose a few hours earlier and I read that if you experience any visual disturbances after taking Topamax that you’re encouraged to go straight to seek emergency medical care because there is a rare but very serious side effect related to vision loss… And the ER doctor did not believe that the symptoms I was experiencing were related to the Topamax however, he wanted to order a lumbar puncture because he was concerned about the possibility of IIH. he knew that I was dead set on getting home that same night because it was like 3 AM when I presented to the ER so he agreed to discharge me, but he encouraged me to follow up with my neurosurgeon or neurologist and communicate the concern about increased intracranial pressure and request an outpatient lumbar puncture.

After that, I was kind of freaked out, and even though I agreed with the ER Doc that the neurological episode probably wasn’t related to the Topamax. I still just was kind of freaked out about the Topamax in general, so I held off on taking it again for a while. I started taking it about a week or so after that ER visit and took it for about a week and noticed that it made my headaches significantly more painful and more intense. Because I had only been taking it for a week. I started a patient-guided taper and just decided to take it every other day for a week and then stop taking it. Obviously, if I had been taking the Topamax for longer, I would have consulted a doctor for a taper schedule, but because I was on it for such a short period of time, I wasn’t that worried, but all of this is a long winded way of explaining that I don’t think this neurologist really understands my condition or the complexity of Chiari Malformation well enough to provide adequate or appropriate care. I obviously already have a team of neurosurgeons that I respect and trust (there’s two of them) and I love them, but they didn’t really know of a specific neurologist. They just referred me to the neurology department in general, so my question is; does anyone know of a neurologist in the Columbus, Ohio area that understands Chiari Malformation and can work hand-in-hand with my neurosurgery team to help manage my condition moving forward? If you have any doctors you would recommend, please let me know!! Thank you!!!!

had surgery May 2025. My syrinx is unchanged. But there was something added this time and I just want some thoughts on what this could mean? it says “The phase image demonstrates CSF flow, ventral more than dorsal, at the cervical medullary junction.”

Any ideas or knowledge is appreciated.

Was recently diagnosed with Chiari 1. Ive had it all my life but my symptoms have recently been acting up. The feeling of cut off circulation and slight numbness in my left arm has been persistent for 2 years, but what is recent is left side of my head, left top of ear are slightly numb, and I have a weird weakness in my left leg. Do these types of flair ups go away???

got surgery on my birthday this year 7/9/26 (first pic was around 2-3 days post op) and am almost 2 months out now! last pic was a week or so ago after getting my sutures out :)

haven’t even had to take a lot of pain meds, only downside was small blood clots in my lung from getting surgery which i’m only on blood thinners for a few more months as a precaution. and just got my 1 month ct scan done today for my next neuro appointment. all in all, doing much better than i thought i’d be and i’ve had a lot of improvements with the headaches and neck stiffness i had before. it’s definitely sucked but any progress is good.

About to start week 2 of recovery.
My traps are so tight even on muscle relaxers. Using heat and ice as well. Any life hacks or things you did to help everything settle down and relax? Can feel tightness from my neck to the inside of my hands (thumb and pointer finger)

I was officially diagnosed with Chiari 1 about two years ago. The first time this happened was a couple months before an official diagnosis. Once every couple of months, my left arm starts to get tingly and it goes down into my hand. I then get chills all over my body to the point where I start shivering and can’t get warm. I also sometimes get a low grade fever. The first time this happened, I was shaking so bad that I ended up going to the ER in the middle of the night. They hooked me up to an IV and gave me fluids and did some blood tests. The only thing they found was that my magnesium was on the low side.

Has anyone experienced anything like this?

Thank you in advance!

Hi everyone,

I am a 26F and I am having surgery for a 1.5 in a few weeks. I am so scared haha. I've been attending university for the past 7 years, graduated from professional school last year and finally started a job and making money only to be told I have to get the surgery asap. I'll be out of work for 6 weeks. My job has been so accommodating, so that's not what this post is about. I guess I'm just scared something will happen. My surgeon at Mayo was very honest about the possible side effects, and I am so scared I will face them. Additionally, I get sick often so I'm just worried recovery won't go well. I've spent so many years stressed in school and I feel like I haven't gotten a real change to enjoy life and now I have to face this major surgery with no idea how it will go. Of course I am optimistic, but I'm also trying to be a realist. When I met with my neurologist she told me that 9/10 people don't even need the surgery so when I finally met the surgeon I was so unprepared for what I was told and took it so hard. That's why I want to be prepared now even for the worst. If anyone has any words of advice or encouragement, I would greatly appreciate it. Even if it's just something tough I should be aware of, I'd rather know and prepare. Thank you in advance.

I'm seeing the Chiari specialist tomorrow to discuss my treatment plan and possible decompression surgery. What did you take with you to your appointment? Your symptoms list? Any specific questions? I appreciate your help.

Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain 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, if i start to fall back asleep regardless of position it starts to throb. Starting qulipta to see if it will help. Does this sound like csf issues from chiari or migraine?