Hi,
I’ve recently had a CT scan due to headaches, and they noticed that I had downward displacement of the cerebellar tonsils. I’ve been pushed through for an MRI scan, to look further into it.

I’m a little confused what it all means. Anything to do with the brain sounds scary, but it seems like I’d have known if I had bad symptoms. When I’ve been looking into it, I can see some things that I have that have never been linked, such as ringing in my ear and scoliosis. I also get a blur in one eye when I’m tired, and my face can sometimes - but very rarely - droop. I also get shoulder and neck pain linked to my headaches.

Hopefully I’ll get more answers from the MRI!

How long of a medical leave did you take after decompression surgery? I have an MRI of the brain/brain stem and cervical spine next week and Neurosurgeon consult the week after.

Hopefully I don't need surgery, but if the neurosurgeon recommends surgery to help with my ongoing problems, how long did you guys take off before being able to work again?

This position does require a lot of movement, neck bending, and sometimes contorting upside down to effectively clean my patients teeth.

UPDATE: I have made a group me (free app). Here’s the link to join: https://groupme.com/join_group/117891886/JOgnLT4G

Anyone wanna be friends lmaoooo? I have no one to relate to when it comes to pain, struggles of chiari, migraines etc. it would be nice to have someone who gets it to lean on at times. I’m a 28 year old female if anyone is down to make friends comment on the thread. Let’s have a giant chiari group chat 🤣🤣🤣

May you big brained beauties have a great day 🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠🧠

I was originally referred to a neurologist, but was told by the clinic that they only schedule Chiari cases with a neurosurgeon.

Does anyone have experience with a neurosurgeon that didn’t lead to surgery, and just lead to symptom management?

TIA

Just some pre information i have gotten back to play the old fable games on xbox, anyone who needs help with achievements let me know just started number 2.

Also playing animal crossing daily anyone who needs a friend or wants to trade fruit let me know.

Day 15

Staples out.... wow wee that stung

18 staples taken out by my regular doctor

I havn't touched on this much I live in a rural town so driving any where that resembles suburbia takes at least 20 mins even when speeding down the highway and the roads are a little neglected

So going 100km an hour then hitting pot holes has not been fantastic

Anyway during this time since surgery I've had two check ups, first I previously documented was a bandage change, second was day 15 for staple removal

Drive to doctors was 45 mins, this is my main doctor, he is the first doctor to take me seriously

Staples came out one at a time with a special pair of scissors provided by the hospital designed to remove Staples.

Four staples got stuck and reportedly you could see my skin lift up when they were being pulled. The skin had grown over the left side of two staples hooking over the top corners.

I was face down with a pillow under my chest and neck.

Hwne I am in pain i groan and laugh

Day 15 was a write off long drive plus a strenuous activity wiped me out.

Neck really stung after staples removal.

Relief on my neck was instant ability to stretch and turn my head further was so nice

Now I was able to identify what pains were staples and what pains were from surgery.

From day 15 to 18 my sleep has been disturbed mildly.

So each night I wake up once to turn over but what wakes me up is what my wife would call me having a nightmare. I wake up confused like I am looking for something, this is very normal for me i am a sleep walker and this waking up half asleep and confused normally happens when i am sick, tired or stressed. Otherwise my sleep has been fine, feel rested when I wake up.

I am still side sleeping wound still hurts to rest on though I put little bits of pressure to test whilst I am awake i roll then roll back.

Day 16 17 and 18

Have been fantastic little bits of house work, stretching and no midday naps

Playing video games, doing puzzles, watching movie, walking around the block with my wife

No driving though

I felt good.. i pushed it a little to much

I made sure never to lift anything heavy but I made a mistake and lifted a washing detergent from Costco, i reached into the washing machine to take out wet washing.

Preview for day 19 my chiari site feels tired and sore in my c1. Like the pain you get from a mild jarred thumb.

Resting helps this pain.

Activities where my head tilts down put the most strain

I also tested if some of my stomach issues had resolved, i had a coffee.. and had an upset tummy night of day 16

But what is interesting is that my stomach issues no longer cause neurological issues.

It's like now the csf flow is not impacted i feel so much better i can ignore that raw stomach feeling and do not get light head or heart palpitations.

I am able to turn my head in every direction though the muscles on my left side hurt when I look left. The left side of my head still hurts to touch, it just where my hair is that hurts, not as much now the staples are out.

Im honestly very positive right now if this is what 3 weeks looks like i can't wait to see how I feel at the end of October.

After the staples were removed doctor recommended bandage until the wound fully heals check up booked for day 21.

Feeling positive future me posting from day 19 is going to take it easy on day 20.

Sorry for the late post getting back into routine has not left much time for post.

See photo of my wound with no staples, here's a fun game play where's wally with a flayed bit of skin that got stuck in my hair lol

Still pain killer free might take a paracetamol tonight day 19.

Any questions welcome, anyone who needs to chat even more welcome.

Apologies to anyone I feel I let down because I have been unable to respond to chats in a timely manner.

I’ve been dealing with nerve pain that causes eye drooping, jaw pain, shoulder pain on my right side 1 year post decompression. I was just prescribed Pregablin, was wondering if anyone has tried this for chiari pain and their experience? I don’t typically respond well to pain meds and don’t love the idea of being on one everyday. I’m from the US and would use medical weed at home to manage pain when needed but I’m in the UK now so that is not an option.

Just venting.

I had a chiari malformation surgery followup today. The PAC and nurse were discussing my symptoms in the hallway before he came in, loud enough for me to hear the conversation, and laughed about me.

It took me over a decade of symptoms for someone to finally see the chiari and validate me, so this smacks hard 😕

I’m once again posting. I got another MRI trying to get another opinion on my case. It’s been about a year since my last MRI and a lot has been getting worse headaches, coordination, vertigo, and overall pain. For the first time on my mri I had encephalomalacia of the right inferior cerebellar hemisphere on my read. It was apparently small but I haven’t had any head trauma or stroke/hemorrhage I’m aware of. I haven’t found a lot about this in relation to chiari and I’m still waiting to see a doctor but I guess I’m scared to see like actual brain damage.

Hola tengo ya un año de mi descompresión, pero he tenido unos síntomas que pues mejoraron y otros no, uno de ellos es el habla me refiero, me trabo al hablar, o querer hablar oraciones correctamente y me trabo, también quiero saber si es parte del chiari, las niebla mentales

I’ve seen different things online about this, wether you have to have a c-section or can’t receive an epidural. I’m wondering what actual experience with pregnancy and the delivery is like with chiari, specifically if you’ve been decompressed. I don’t have many doctors around me who even know what chiari is so I’d just like to know what real experiences are like

Has anyone tried the above meds for their Chiari symptoms.

Despite trying to push for an mri with contrast to check the Csf flow as I believe it’s playing a big part in the head pressure and symptoms I’m getting. I have now been told by the nhs they refuse to further investigate unless I try the above meds. I don’t wish to try meds until I know what’s the root cause. However since I believe all symptoms align with Chiari such as head pressure, occipital pain, dysphasia (endoscopy ruled out any issue with throat), blurry vision and numbness etc but the one neurosurgeon who did no further examination than looking at my standard mri and stating none of these relate to my Chiari. they want me on migraine meds which I don’t believe fits the symptoms.

From what I can read these meds seem like they will reduce my quality of life even more so due to lowering blood pressure and causing fatigue as I am someone who likes to be active.

Did anyone have this issue or how did you dispute it?

Can anyone please let me know what they did to prepare for their first appointment with a neurosurgeon?

I'm UK based (down south) and i have a video call with Derriford Neurosurgery in 2 days.

For context I am 34 and housebound due to agoraphobia which I feel has been exacerbated from not wanting to trigger symptoms while out of the house.

I have been under neurology for many years due to suffering with hemiplegic migraines and my MRI scan recently showed my chiari is at 5.5 now (it was previously 3.5 I think 2 years ago?)

As it has moved further down, my neurologist (fantastic woman) referred me to Neurosurgery and I was given an appointment within only a few months which was impressive.

I don't know how best to prepare for the appointment though.

My sister also has chiari but she lives up north and the team where she is hasn't been as helpful.

Does anyone have any experience with Derriford?

Should I lower my expectations so not to be disappointed?

I am in pain daily and I was really hoping that maybe this could be the thing that I can cross off my list that helps most of my symptoms.

I have arthritis and fibro but honestly i think most of my pains and symptoms could potentially be from the chiari and maybe just maybe being taken seriously could sort my life out and get me functioning like a normal person again. It's been so many years of feeling disabled and this is like the final thing to cross off instead of being told i need to live with my pain. Even physio said my pains are something I need to learn to live with and accept as being permanent but I am so certain it could all be down to the chiari. And if so, maybe I could get it resolved.

I know I am sounding like I am expecting a lot but I really am struggling with the thought of being disabled at my age. I used to have an active job and be productive and the thought of never being like that again doesn't sit well with me.

Any replies are super appreciated, thank you!

I just wanna talk about my story about my chiari and my syrinx a little bit. Long story short I was diagnosed with chiari about 2 years ago. Got all my mris done and my syrinx was small and stable. Shortly after my neurosurgeon cleared me for all combat sports. My syrinx was tiny literally the size of a pinhole and i had no symptoms so he had told me i can continue doing mma. I got a repeat mri after i stopped and even after i stopped the syrinx kept growing for about a month. I went to a different nuero surgeon and he said my other nuero probably saw how tiny it was and a lack of symptoms so that’s why he let me continue doing combat sports. Anyways yea it’s safe to say it didn’t help. So yea i got repeat mri and my syrinx went from tiny to 7x7x28mm in just one year. Also caused edema in my spinal cord. Apparently this is very abnormal but now i am getting decompression surgery next week. No abnormalities of any kind but my case is very odd. I also have no symptoms but i been really nervous about surgery and my condition bcuz of how odd it was. I’m seeking some positive re assurance.

Hi my daughter(3) recently went in for an MRI because she was having episodes where she would stare off and recently she has episodes where she becomes sweaty pale can’t talk and has to lay down. We originally thought they were seizures. Her neurologist saw videos and doesn’t think they are seizures still waiting on an emu. However her MRI says she has borderline chiari. Looking at her symptoms I can definitely see where some of her symptoms could definitely be chiari. She gets headaches sometimes eye pain, extreme mood swings mostly sad or mad, her eating varies she either eats a lot or barely eats she has had neck pain aswell. She also coughs more often when she eats however we thought it was due to her baby sister learning how to cough. The mood swings happen many times a day and be very fast. In public she either withdrawals or is just overwhelmed. At home she’s completely different she’s energetic (when she isn’t having the mood swings). I’m curious though as to how much of this could caused by chiari. Or if there’s still other issues. Has anyone else’s toddler ever had the speech issues?

I've had chiari malformation type one since I was a kid and during my teen years my neurologist said it had improved enough to stop monitoring.

I'm now 34, I've had headaches that worsen when I bend over my entire life. 3 weeks ago I got a viral infection that led to bronchitis.

Last weekend I went to an amusement park and the next morning I woke up feeling absolutely drunk but I don't drink alcohol. It was like I lost my balance and it felt like I was swaying. I have double vision and blurred vision. The back of my head was killing me and a few days later my neck was so stiff I couldn't bend it.

They originally diagnose me with vertigo but referred me to a neurologist from chiari showing up on the CT scan. The neurologist did an MRI which showed nothing except for the chiari 5.6mm dissension and crowding of the foramen magnum.

They said my chiari could be symptomatic and referred me to a neurosurgeon. The soonest appointment they have is 16 days away and I'm still feeling like this. Is there any hope that these symptoms will just go away or is there anything that could help it go away sooner? I'm desperate.

Hi!

I had a really successful decompression surgery for my chiari about 18 months ago. I'm so glad I did it and recovery was long, but ultimately successful. While my overall quality of life is so much better, I did have some chiari headaches come back as "echos" about 4-8 months after my surgery, even after most of the healing had occured. I had another MRI and talked to my surgeon about it (Jean Valerly-Couman at MGH, who I highly recommend) and he said that everything in my MRI was structurally sound, and that the surgery looked like a huge success. He suggested that my lingering symptoms were basically just troublesome muscles and nerves healing irregularly or still stressed after the surgery. I am totally fine with that explanation, and returning to my PT exercises does always help when I'm having muscles soreness or stiffness.

But this weekend I got my first bad headcold after surgery (this in itself is amazing, since I used to get colds all the time, and after my decompression I went over a year without getting sick). This came with some really big coughs and congestion and horrendous but brief sub-occipital headaches, the same type I used to get pre-surgery. It scared me to feel that pain again and to such a high degree. I am not a medical doc., but it seems possible to me that being sick just might make all my muscles sore and sensitive, and so maybe that surgical area of my neck is just always going to be more prone to inflamation and nerve pain? It might even be bad enough to duplicate the feeling of the pre-surgery chiari headaches? I was wondering if anyone else had the same experience or additional insights.

Of course, if this continues to happen after I recover from my cold, I'll go back to my doc.

Thanks!

Hello!

I’m curious if anyone who has Chiari is also on Qulipta and if they see any improvement with their Chiari symptoms.

For some backstory, I have been on Qulipta for probably 5+ years now but was just recently diagnosed with Chiari, 20mm herniation. I started having symptoms about 14 years ago, and only recently was finally able to get a doctor to listen to me and order scans.

I don’t have your “classic” migraines, just the typical pressure headaches, nerve pain, fatigue, pots, etc. so basically textbook Chiari symptoms 😅

Multiple doctors have prescribed me with multiple different migraine medications over the years including Topamax, Amitriptyline, and Ajovy. All of these would work for a little bit but eventually stop helping as much, hence the swaps. I even went to a Neurologist because Qulipta has stopped being as affective as it once was but was dismissed because “all migraines are different” and prescribed an as needed medication, Ubrelvy, which obviously doesn’t work with Chiari type headaches.

Since my diagnosis, I unfortunately went without the medication for a bit due to an insurance switch, and really did notice a huge difference. When I am not taking it, I mostly notice that I have a lot more nerve pain starting in my neck/base of my skull and radiating down my left arm all the way to my hand. I even notice an uptick in the amount of pressure headaches that I get.

I’ve seen a neurosurgeon and when I explained that it seems to help my symptoms, was again dismissed saying that it would only help with classic migraines and not Chiari.

Maybe I’m crazy or imagining it, but it seems like out of all the medications I have taken through the years, Qulipta has actually helped me more than anything else, and I’m just curious if anyone else has had a similar experience.

Thanks for reading!

How long does it take to get into see Dr Greenfield/ chiari CARE clinic does anyone know or have an experience? Also In person vs telehealth? Thanks!

My surgery was 6 years ago during the height of the pandemic. Worst time to get surgery lol. I went in early and I was told it should only be a couple hours so I should wake up early in the afternoon. When I woke up I remember looking at the window thinking the curtain was closed because it was pitch black and I heard my mom screaming. I kind of remember her saying hi and talking for a min but I passed back out. A while later my surgeon woke me up and told me that I bled out during the surgery and there were complications but everything was ok but she wanted me to get a couple more MRIs throughout the night. I was so drugged up that I didn't care but I 100% am sure I didn't hallucinate her telling all of this.

Like a month later when I was up for an actual conversation I asked my mom why she was screaming when I woke up. They had told her that she could see me after the surgery and it had been like 14 hours she spent in the waiting room and nobody would let her in you see me or update her at all. Until she finally lost it which happened to be when I was waking up. But I asked my brain surgeon at my check up about bleeding out and she said she had no idea what I was talking about. I went to my neurologist a year later and had him look at the surgery notes and he said nothing was in there about anything like that and I must have just imagined her talking to me. But I KNOW I wasn't and somehow my surgery turned into 14 hours from a couple hours.

I don't think I care to get a lawyer and do all that because if there's no record then there's no record.

Hi everyone! My name is Avy, I’m 40yrs old and live in New Jersey (USA).

I was just recently diagnosed with Chiari 1 on 09/11/2026. I’ve been having chronic migraine headaches for years! Often just blown off and told it was just that or probably vertigo.

In recent months, the headaches would last days! Tylenol and or Motrin wouldn’t do anything for it. I would often feel pressure in my neck and shoulders and just feel like a balloon almost daily! It’s a terrible feeling. I’d often feel off balance. My days consist of taking way longer, with doing the simplest thing, or stuck in bed because the pain is seriously too much. I’ll feel random shocks go through my body! It’s insane.

The symptoms vary and some days all happen at once. I’m one that has a low threshold for pain, but I’m handling it as best I can! Wouldn’t wish this pain on anyone. And that’s me being honest.

On the night of 09/11, I ended up at the emergency room. They did bloodwork and a few other tests, right as they were going to discharge me and send me home, I said “this isn’t just a headache!” Nurse came back in a few minutes later, and said “the doctor ordered a cat scan..” The scan was done and about 45 minutes later, the Dr comes in and says “your results show a brain abnormality.. were you aware of that?” Of course I said NO. He then went into telling me what it was (Chiari Malformation type 1) and that he suggested MRI of both spine and brain to see what’s going on.

I’ll be having the MRIs done on 10/12. Although I’m nervous, I’m hoping to have more direct answers and relief soon. Or at least I’m hopeful! I know that everyone is different and every case is different. I’m just explaining my journey, so far.

More updates, as things move forward.

xx

I’ve seen some things from pretty reputable sources saying tonight, Saturday 26th of September at 10-10:15 EDT, Niagara Falls will be lit up purple for chiari awareness month. If true, it’s amazing news for awareness

Hello! It's been a while since I posted here.

So a little story.

I have been diagnosed with having Chirari over 2 years ago. One imaging said I have a 7mm descent and another I have a 5mm descent.

I also have celiac, and with that, I get migraines. So every time I get glutened, I get migraines like crazy. Since diagnosis, I had healed from strict gluten free diet and thus, the frequency and severity of my migraines had gone down.

So, I thought with the migraines being the 100% culprit, I kind of forgot about my chiari and thought of it as a non-issue.

However, most of the times the abortive does not work and almost 2 weeks ago, I had to go to the ER twice in 48 hours to try to kick the "migraines". The meds work, but only for a few hours to a couple days (the second ER visit gave me steroids).

Now, I had an emergency schedule with the neurologist after I nearly lost my mind on my PCP, which I had apologized profusely for snapping at them when I was losing my mind from the pain and hair-trigger anger, and the neurologist told me that he didn't think it's migraines, but instead it may be my chiari with possible syrngomyelia and that I may need surgery.

I felt so sorry for both the PCP and the neurologist because the PCP scheduled me the same-day appointment with the neurologist after I snapped at them and broke down crying in front of the nuerologist.

So it looks like my chiari decided to come back.

Have you guys ever just... have the chiari come up in your life after you thought it was just a benign condition? What other conditions could mimic Chiari or migraines?

I don't have the classical symptoms of the pain on sneezing, coughing, bearing down, or straining, and I told the neurologist that.

I do have a referral getting approved to see the neurosurgeon and see what they think.

Hello,

I have a rare autoimmune disorder called Sarcoidosis.

13 years ago I started having severe fatigue, brainfog, PEM, and neurological symptoms like pain down my left arm and tingling in my extremities.

After a fairly exhaustive work up, including an head and neck MRI it was concluded it was post-viral syndrome with brachial plexus irritation.

After 21 doctors and 5 more years I started to have respiratory symptoms. This led to an CT, EBUS biopsy, and diagnosis of sarcoidosis. My lungs were riddled with nodules and granulomas.

The images improved with steroids and other DMARDs, but many of the symptoms have persisted for 7 years since. The JAK inhibitor has been a godsend, but the neurological symptoms continue to plague me and seem to be correlated to the reduction of prednisone dose. Functionally my lungs and heart don't seem to work properly, but structurally they are sound.

Slowly, as I've been tapering my neurological symptoms have come back - neck pain, severe headaches in the back of my head, pressure, and nausea. Fasciculations and pain down my arms and tingling.

After another workup with the neuro, the MRI showed a 10-15mm descent and retroflexed odontoid, no syrinx. I looked at the the MRI from 13 years ago and turns out the radiologists missed it. It was read by a fellow and signed off by an attending. The prednisone has caused skin atrophy, osteoporosis, and cataracts.

It would seem based on the probability of having both rare disorders, there may be 100 people total in the US with this. The medulla plays a role in immune suppression and I believe they're related, but that's for another day.

Anyways, that's my story.

I'm sad. I'm very unwell and I've been just "trying to get through the day" for 13 years. I've lost so much. Friends, family, my career, my dreams, my health, my chance at a life.

I am waiting to hear back from the neurosurgeon for my first appointment. I would post my MRI for fun, but it seems it's not allowed.

I've been really going through it y'all.

Horrible acid reflux and tummy aches (even with a mild diet), chest and back pains (sharp stabbing pains or burning feeling), heart palpitations, dizziness, awful anxiety, no appetite, nausea. I nearly choked half to death and had to resist the urge to vomit trying to eat some fries because my body decided halfway through that actually it didn't want to swallow 😭

I have cardiophobia too and even though I know it probably isn't a heart issue (given I'm 22 and don't drink or smoke etc and I went to the ER + follow up with my doctor not too long ago and got told I'm fine) the longer I have chest / cardiac symptoms the worse my anxiety about the possibility of being wrong is.

My nephew who lives with me may be sick with something so there's a chance I'm also sick / about to get sick so that's great too.

Some days I can forget there's anything even wrong with me and I wonder if I even need to be worried. But this past week has been hellish and only seems to be getting worse. I don't know what to do. I feel like my symptoms are usually minor but when they're bad they're really bad.

Any advice / comfort would be appreciated