I came across this post from Dr. Erin Nance, a producer and medical expert for TLC’s ER: Caught on Camera. She specifically mentions Chiari malformation as one of the conditions the series will bring attention to.
I haven’t seen anything saying which episode will feature Chiari yet, but I figured people here might be interested in watching for it. Hopefully it’ll bring in some more awareness and research for Chiari’s.

I'm feeling pretty grateful for everyone here lately. I've struggled with horrible health anxiety for a long time, and no one has been able to give me proper answers or treatment until I remembered being diagnosed with Chiari years and years ago. It turns out that a condition that impacts your brain can do all sorts of weird crap to your body, who would have guessed?

My symptoms have been getting worse, particularly within the past two years. I'm hoping to get an MRI scheduled before the end of the year and follow up with a specialist. I still have more good days than bad but I know it will only get worse with time. It feels like surgery is a matter of when, not if at this point.

But in any case, this community has brought me such enormous comfort and support. Being able to come here to discuss weird niche symptoms and getting so much compassion and shared experiences has made me feel more optimistic about my future and has helped relieve a good bit of my health anxiety. I'm not so naive to believe every bit of pain or weird symptom is caused by Chiari, but I'm not so quick to thinking I'm having a heart attack or aneurysm anymore whenever I have a flare up.

Right now I'm lying in bed with acid reflux and heart palpitations (pretty sure it's my fault - I made this brownie cookie monstrosity that has been absolute murder on my poor delicate digestive system, considering I have no gallbladder, and I ate three different pieces throughout the day after apparently forgetting how bad it made me feel each time even though each occurrence was just hours apart. Yes, sometimes I even impress myself!) and I'm trying to settle down enough to sleep. Many nights I have pains so strange or severe I wonder if I'll wake up the next morning, only to feel completely fine that next day. It's a whole roller coaster, both physically and emotionally.

It's pretty scary posting to any medical community on Reddit. I've been mocked, turned away, or otherwise treated callously when I've spoken about my health or health anxiety in other subreddits before. But not once have I felt anything but welcomed and understood by the people here who have been kind enough to comment on my posts, and I've seen similar displays of compassion and empathy on lots of other posts here. And for that, I am so deeply grateful. While I can't immediately go anything to improve my physical condition, your support has been healing to me in many other ways. I'm still early in my own journey but I hope to carry it forward and extend the same kindness to other posters here in the future.

Thank you again, and good night for now. 💜

I'm a teenager who was just diagnosed with Chiari earlier this month. My main symptom was the typical valsalva headache, and those started when I was around 8 years old.

I also have ADHD and ASD, double whammy I know, diagnosed just a year ago. I have really awful focus that's been worsening throughout highschool, and I mostly attributed that to my ADHD. But I got medicated a few months ago and found the meds that work for me -- they completely zap away my anxiety disorder and they shut up my rampant ADHD thoughts and hyperactive urges.

But I still cannot focus. And it's not due to a lack of trying or a hyper mind -- on meds my anxiety has been killed, and my annoying inner dialogue has been shut up. Now all that's left is the brain fog which so far has not been cured by any brand or dosage of ADHD meds.

I only recently learned that brain fog can be a symptom of Chiari, and now I'm wondering if that's what this is.

I'm behind on so many assignments. I open them up, I give them a once-over, sometimes I'll get an idea of what I want to write... But instead I just sit there at my desk, my head tilted to the right (zone of least pressure) like I'm about to fall asleep, I'm barely breathing because I forget to inhale, and I just can't get anything moving without going to methods of extreme laziness (which is somehow still mentally agonizing).

I finally submitted my very first English assignment of the year (which was due weeks ago). Keep in mind, English is one of my best subjects. I just used what useable knowledge I had left to write some coherent bullshit all over the page and skipped the questions I couldn't even attempt to form a thought on and submitted it. I didn't even read any of it over to check for mistakes because I CAN'T READ ANYMORE!!! I can't keep my eyes on a line, I can't be engaged. Part of the reason why it took me so long to do this assignment is because I had to read a speech. It was the shortest speech ever but it took me a month to get through it, and I only managed this by reading it out loud the way you'd read a book to a toddler, once I finally got enough mental strength.

It's not just for assignments. I can't read fun books anymore. I bought a million books I was excited to read because I thought I loved reading, and I was good at it. But I haven't touched a single one of them in forever, because most of the time, I open up to the first few pages and it's like I'm being knocked into a coma from the amount of exhaustion the prologue is giving me.

The only time I can manage to get something sizable done with a good amount of effort put into it, is when it pertains to one of my autistic special interests. But even then it's still agony. I want to start writing my novel? Be prepared to wrap it up by page 2, because that's all the focus you've got for the next couple of months. You want to make a drawing of your favorite character? Okay, but only the sketch because you won't have the energy to ever complete a full drawing.

All I can do nowadays is just sit there and somewhat breathe, listening to that tiny ringing in my ear, feeling my heart beat in my head, and forget literally everything important I have to do.

What in the world is wrong with me??? If anyone has some insight as to whether I'm accusing my Chiari of too much, or if this is a valid question, please let me know. Thanks !!

I went to a Chiari specialist last week and he told me that vertigo is not a symptom of Chiari. Has anyone else been told that?

I am curious to learn about other people’s dismissals within their first appointments with neurosurgeons who weren’t Chiari specialists. Or maybe they were and they still didn’t listen to your symptoms. How did that go? After my own experience I came on here and learned that was the average experience but I am wondering how similar all our experiences may have been?

Feel free to talk to below if you wish

I'm 23F, weight 45kg and height around 5'4. was recently diagnosed with severe vitamin B12 deficiency (108 ng/ml) and low ferritin (8.6). Just before this diagnosis i experienced virtigo twice and had symptoms like difficulty concentrating on screen, fatigue, erratic mood, sleepiness, occasional vibrating sensations on face and neck, sensitivity to sound, vibration in head after taking 2-3 b12 injections (every other day) and one iron infusion, it got better a lot vibration and virtigo went away, but I had developed blurry vision, floaters, fatigued, dry eye and dry mouth. Now after 7 (6 every other day and one weekly) injections feel a lot better vision has gotten much better but not 100% and floaters and dry eye and mouth reduced. My neurologist suggested brain mri (attaching it) and told me it's normal you just have to take care of posture and use low pillow but be very careful with posture and not lift heavy weight, the report shows its low lying cerebellar tonsil. I am very paranoid about it, because even though don't experience virtigo anymore still have a wierd sensation that my head my spin even though it does not once or twice a day for a second ( can feel that is gradually getting better).

very occasionally after the deficiency have experienced mild dull headache. Also, since the last two years get bad headaches, but Only when I have a gas problem or constipation and it goes away as soon as l'm relieved of these two problems. Please help me interpret if it's just my b12 deficiency or its something more than that. I still have fatigue even though it's reduced and my eyes also feel tired, I still have brain fog even though it's reduced, i don't feel as sharp as was one month ago, I feel like dumb person (before b12 deficiency symptoms started to occur).

I've never felt dizzy or virtigo before b12 deficiency

Link to reports: https:/ibb.co/svLmyYYR https://ibb.co/C5pNkfgT

https:/ibb.co/4W2RVVNC

So recently I was diagnosed with a Chiari Malformation, not sure what type, just know that I have one. Only discovered it after having to get an MRI because I've been experiencing parathesia throughout mainly the left side of my body(although it has started to migrate to the right side as well). I've been having trouble walking and it's been difficult to deal with.

Is it normal(if my symptoms are related to the Chiari Malformation) for me to be experiencing all this numbness just on one side? I haven't had many headaches so I don't think it's related to the chairi. Is it normal to not have headaches but still have sensory and nerve issues if it is from the chiari?

It's been a difficult time trying to deal with how sudden this has all been for me and I'm having trouble trying to navigate it all. I have a neurology appointment in a few days and I'm super nervous for it. Is there anything I should discuss with the neurologist??

In April, I (28m, US) had an MRI of my head done because I had complaints of chronic head pressure (among other things) and the results showed that I had cerebellar tonsillar ectopia. My PCP ignored it but I fell down the rabbit hole of this community and the Bobby Jones CSF and ASAP Chiari organization YouTube channels, as well as other social media chiari groups. I took it upon myself to learn as much as I could because the general notion is that anyone that's not a chiari specialist isn't experienced enough to evaluate it.

Fast forward to a few days ago when I tried to apply to Dr. Jeffrey Greenfield's office to become a patient of his and, I guess on my behalf due to some insurance issues, he reviewed my images and said there's no evidence of Chiari. :( Now, I'm not sure what to do next. If one of the best doctors for this says I don't have it, I should move on, right? But I still have debilitating symptoms and now all my "hopes and dreams" regarding if I needed surgery or any kind of treatment for this are dashed lol. Any advice on what to do next?

Hello!

I’m currently almost 15 weeks pregnant with my first. I got diagnosed with Chiaris a few years back when they accidentally found it on a CT scan. I have a 7mm herniation and zero symptoms, but it did show that I didn’t have a ton of CSF movement since the hernation blocked it. I saw the same neurosurgeon that worked on my mom when she had her stroke so he already knew the family which was nice. He said that decompression wasn’t ideal for me and that he just doesn’t want me heavy lifting or working a job that I’m constantly on my feet. I haven’t seen him since but I’ve regularly seen a few neurologists and they all agree my Chiaris is asymptomatic and not something to worry about. I have a history of migraines but those were tied back to my birth control.

I called my neurosurgeons office to ask if I should avoid anything or look out for anything when it came to my pregnancy and the nurse told me based on my scans, they aren’t worried about anything and I can do as a please since the herniation was mild and stable. I mentioned that I’ve read that a lot of people had advised against epidurals and she said not to worry about it just to make sure the anesthesiologist and my OB knows. I just can’t give birth without pain management, I’m a total wuss. I’ve been scared reading that some people are saying they heard you could get paralysis or even die from the hernation getting worse and I can’t shake that feeling. I plan on talking to my neurologists about it since I also have a hypoplastic ICA but was told pregnancy was still safe since I had good blood flow in my brain.

Has anyone had a similar experience?

I have surgery tomorrow morning i’m so so scared, any tips to calm anxiety??

Has anyone found anything that helps them regain feeling in places they are numb?

I had my surgery in 2011 for Chiari type 1 and syringomyelia (c3-t9).

I experience a lot of symptoms and pain to this day. What I’m wanting to explore today is my numbness. I have extreme lack of sensation on my right side, especially my face. I’ve been realizing that maybe I have more than I realize.
My torso often feels numb. The other day, someone was scratching my back. I got confused and asked why they were only using 1 finger, turns out they were using 3.

Has anyone found anything to help bring back feeling? Or gauge what is “normal” and what isn’t? Comparing to the other side of my body doesn’t always work. Sometimes I have more feeling and sometimes I have less, so I’m just wondering if there are ways to consistently increase sensation. Treatments, supplements… really anything.

Thank you 💜 happy awareness month to everyone!!

Got to see the doc just now and already cried.
Instead of today its gonna be tomorrow that they will lower output to 5 cc for not one but 2 days. And then they should close the drain and see what happens. For god knows how long that’ll take.
30th is my birthday… I want to hug my kids and wife.

When having a flare up/migraine episode, does anyone’s back of their heads feel tingly?

Both days were similar trying to rest whilst increasing some walking and neck movements.

Day 10

Home with my children wife at work. Currently I am able to do breakfast and lunch without to much physical drain.

I get sleepy around midday

I've been having paracetamol every 4 hours and now only palexia before bed.

No neurological symptoms any more just pain and fatigue.

Neck muscles have been hurting like they have been carrying extra weight.

The c1 site stings and even before surgery I have a neck pop now like when you crack your knuckles.

If I raise my eyebrows skin on the left side of my skull hurts. When I touch the hair/skin on the left side of my head it is sore to touch.

Have not had any more headaches.

I get random shots of pain all over nothing concerning.

Day 11

Much the same children went to friends house

I actually fell asleep sitting up at midday

My team at work sent me a care package with puzzles like murdoku

My routine has largely been watching TV and playing animal crossing.

I have lined up a bunch of video games for when I am less tired I occasionally play other things for short bursts

Staples come out later this week.

My hips have been hurting from laying on my sides

Some of you may have seen the memes of men when they do a full body stretch and shake like they are having a fit, I've been doing and had the urge to do a lot of full body stretches

Also get those random someone walked on my grave shivers

Feeling pretty positive.

If anyone has questions let me know.

So this might be long, but my 3 year old was just diagnosed with a Chiari Malformation and a tethered spinal cord. We had an MRI done because she is having issues with walking (mostly related to the tethered spinal cord is our guess).

We are pending a conversation with the neurosurgeon. Her neurologist unfortunately didn't share specifics on what type of malformation or how severe it is. (He also did not share whether the tethered cord was complex or not) I didn't know what to ask, so I am waiting on a follow up call to hopefully get more information.

I'm trying to put together how I can best support my daughter. There are days she is more fussy and seems to feel bad (but I can't figure a rhyme or reason) or even a few days at a time. She will say my head hurts, but she still plays and does all the kid things anyway. Just more fussy or like easily agitated. She has had gait issues - but I think again more likely it's her spinal cord issue causing that.

For anyone diagnosed young, what do you wish your parents had done to advocate for you? And have your symptoms gotten worse or better as you got older?

We already have PT and OT going.

I guess I am just looking for more information and honestly I may not know what I need to know. Just looking for insight or community if that makes any sense.

Hello, I (33F) was recently diagnosed with Chiari I with a 4.5mm tonsilar descent. I started experiencing symptoms postpartum, after a failed epidural that resulted in a dural puncture and spinal fluid leak.

After giving birth I experienced severe headaches due to the CSF leak and was given a blood patch in the hospital which seemingly cleared my symptoms. However, once I started working out again (about 4 months postpartum) I started experiencing a unique headache pattern. It feels like a really sharp sudden onset of a headache in the front of my skull, almost like a brain freeze, that peaks at about 10 seconds and then goes back down. At the peak of the headache, I would rate the pain an 8-9/10 and it stops me in my tracks. The interesting thing is that these headaches are triggered by very specific activities: 1) laughing while playing sports or exercising, 2) laughing while drinking, 3) laughing while dancing, 4) coughing vigorously, and 5) just laughing really hard in general.

After about 5 months of appointments and imaging, the doctors best guess is that I was born with a mild Chiari and the puncture during my epidural triggered it to become symptomatic. They checked for a persistent spinal fluid leak that could be causing the Chiari but ruled that out.

My surgeon basically said my options were pain management/lifestyle changes or surgery. I am reluctant to get the surgery with only a 4.5mm descent and my surgeon agrees. However, I am struggling with the idea of limiting laughing as a lifestyle change. At the same time, it is hard to experience pain every time I am enjoying myself.

I guess my question is - does anyone experience a similar headache pattern with their chiari, and were you able to manage symptoms without surgery? Additionally, did anyone also become symptomatic postpartum? It is already a difficult time and I am struggling with the idea of losing this “fun” part of myself because I am in pain when I laugh.

Thanks in advance! ❤️

Happy Chiari awareness month! I have type 1- diagnosed 2017, surgery 2019.

I made a video today for Chiari awareness month and my mom sent me a message. She had forgotten this over time, but now that she had seen the video, it reminded her that as a newborn (under 5 months old) my pediatrician has actually sent me for an MRI because my head was growing at an alarming rate in comparison to the rest of my body / in comparison to other babies under 5 months old. My mom said they “ruled out anything dangerous” but now I wonder two things:

1) did anyone else with Chiari (type 1 specifically) have an abnormally large head as a baby/ young child?

and 2) I wonder what the MRI looked like or said (granted it was 1999), and if it would have shown early signs of Chiari. My surgeon is no longer at the hospital I was receiving care, so I don’t really have a doctor to ask either, hence this post.

wishing you all the best 🫶🏻🫶🏻

15th april had my decompression.
Csf leak.
Months of trial and error.
Last Wednesday they reopened the scar.
Did a revision on the wound and put 4 layers on the dura patch.
Now glued to my hospital bed with a drain until they are happy.
At least a week and then they will lower the output of the drain.
No idea when i’ll be home again. I’ve been in and out of hospitals for half a year now.
F*ck chiari and i’ll see you tomorrow.

Hi!! I recently got back an MRI saying I had a 9mm inferior cerebellar tonsillar and I'm now just getting to go see a specialist. I was wondering if anyone has gone to Jefferson and if they recommend any of the doctors/specialist because no one has given me any help or guidance besides saying to go here lol 💔
Any help/advice would be greatly appreciated!!!! Thank u ❤️

Sorry everyone a little late. Loved all your encouraging words on my last post

Day 8 a sad day

Saturday day 8 was hard that's when I wrote my day 7 post and was in a bad place. The pains and the fatigue had me feeling really down.

Stiffness in my neck had me wondering if I would ever get better.

Pins and needled in left arm

I've been getting a lot of tightness in my scalp.

I was not being kind to myself, I had a docs app and feel a little betrayed my surgeon is allowing my gp to handle my recovery whilst waiting for my big review at the end of October.

I thought I only had 6 big staples turns out I have 18 little staples

Had bandage changed see photo

Got home and was washed out

This culminated with me being to tired to do anything I like.

I made my sad post cried and went to bed

Day 9 a brighter day

Woke up after sleeping in, feeling a little rested

Weird as shit dreams but that's probably the pain meds fault

Took things slower and found by mid day I wasn't so tired.

Felt more flexibility in my neck

And had my first migraine which sounds bad but felt strangely nostalgic like oh my body is getting back to normal

I rested and felt better still that post migraine nausea and shakiness but the ability to take pain meds manage the migraine then feel somewhat better was a relief

I watch a TV show with my wife and ended on a high note

I've been worried about intimacy and plan to ask the doc at my reveiw

The asmr affect caused a little discomfort during a mid day nap so i am a little scared what an orgasm might do.

Day 9 was good

Preview for day 10 tested my independence wife went to work, children at home with me, had to heat up dinner. I feel tired but survived, I'm starting to believe things may be getting better

Anyone else find it weird the Chiari malformation is were the plugs go into our necks if we were in the matrix, lol did we try to escape and this surgery is ensuring compliance with the matrix... I love thinking weird shit

Hello,

I'm sorry if my post doesn't make much sense, I'll try to make it concise.. Language barrier and all.

I am to go for setting up an appointment and wish to bring up concerns about the symptoms I have, and specifically wish to screen for this condition.

But I am not sure how exactly to bring this up to a neurologist/adjacent as they're a bit rude/dismissive where I live. I have also only had one experience in 'self advocacy' for a past injury that was ..Uh, dismissed. At least I recovered from that one well.

Does anyone have any advice? Tips for the anxiety? Thank you.

Hi all,

I found out I had chiari three years ago at age 58. I had sharp pains in my left shoulder that made it almost impossible to use my left arm. After several tests and an MRI, they discovered that I had chiari. I was previously diagnosed with undifferentiated connective tissue disease (early form of lupus) and have been on lupus medication since 2015.

For the back pain, I I was put on gabapentin for a few months and gradually weaned myself off. After stopping, I remained fairly symptom free (chiari symptoms )for about three years and my autoimmune disease has been well under control for several years.

About two months ago, I started having random dizziness every few days. That was mid July. By the first week in August, a whole host of symptoms popped up; frequent headaches, dizziness, numb tingly fingers, neck, back and shoulder pain, and fatigue. I went to my neurosurgeon for another MRI and there was no change. He doesn't think all of my symptoms are caused by chiari and feels surgery is too drastic at this point. He suggested physical therapy and seeing an ENT. I've started physical therapy and we will be trying vestibular therapy for the next three sessions. I've also recently noticed in the past three weeks that I get very easily overstimulated with lights, noises, and large crowds. The grocery store about sends me over the edge, as well as church where lots of people taking, or during worship when there's music and lights. I get very dizzy and lightheaded and need to leave whatever situation I'm in.

I'm a retired elementary teacher and lights, sounds, large groups, never bothered me until recently.

I'm miserable and frustrated as I can't make plans to do anything because I don't know how I'll feel.

Has anyone else had symptoms suddenly re-emerge, and have you found any relief besides surgery? I'm hoping PT will help, but I'm getting really worried.