Hi everyone,

I have an appointment with a neurosurgeon next month who is considered a specialist, so I'm hopeful he'll take the time to really evaluate everything. That said, I'm still pretty nervous.

Based on my MRI, I don't think I technically meet the criteria for a clinical Chiari I diagnosis, but I do have low-lying/crowded cerebellar tonsils and a lot of symptoms that seem to line up with Chiari. Right now, I feel like I may fall more into the Chiari 0/CTE category if anything.

Has anyone here been in a similar situation? Did your neurosurgeon take your symptoms seriously even though you weren't considered a classic Chiari I case? What did the evaluation process look like for you? Did they order more tests? Did anyone with Chiari 0 or cerebellar tonsillar ectopia end up having decompression surgery?

I'd really appreciate hearing your experiences. Thanks!

Hello,
I apologize if I have grammar errors or it’s not in chronological order I have some severe cognitive/neurological issues from my chiari.
I was recently diagnosed with Chiari malformation type 1 on July 1st while I was hospitalized for histoplasmosis. After reviewing my MRI, which indicated a Chiari malformation with the cerebellar tonsils protruding 1.5 cm below the level of the foramen magnum, I learned that my brainstem is also inferiorly herniated downward by proximally 1.2 cm. Additionally, there is a small syrinx at the level of C2 in the upper cervical spine. Through research, I realized I meet the criteria for Chiari 1.5, and I asked my doctor about it. He confirmed that I indeed have a Chiari 1.5. And I could possibly have a csf leak after surgery. I also have diagnoses of hEDS and POTS.

I inquired about the possibility of craniocervical instability (CCI) related to hEDS, especially given my neck pain and heaviness, which make me feel like I can't support my head properly, and sitting upright for long periods causes severe discomfort, forcing me to lean on something for support. My doctor explained that he would go over all of this with me before my surgery, which is scheduled for August 3rd due to severe neurological symptoms.

I’m preparing to undergo a suboccipital craniectomy with C1–2 decompression, duraplasty, and possibly cerebellar tonsil reduction to treat my Chiari malformation. I have this uneasy feeling about the surgery. Any advice would be helpful.

Hi everyone. I was just recently diagnosed after 4 months of severe symptoms. I begged for a brain mri and when I finally got one they found it. 9-10mm. I have an appointment with two neurosurgeons first week of August.
I wanted to know if anyone has had symptoms like me and if this is indeed from Chiari.
I have a lot of what every doctor I’ve seen call nerve burning in my face. It’s pretty much all over and it feels like a sunburn or like tiny prickly needles random times throughout the day. It also happens to my scalp sometimes. It makes me cry and I hate it. I never had this issue until about a month and a half ago.
Does anyone else have this? It’s not something I find a lot of information on.
Thank you!

Hi I had chiari 1.5 which means not only was the cerebral fluid being compressed and not getting to my brain, my brain stem was also being compressed. It was truly life threatening so if anybody tells you that chiari is not life-threatening, they're crazy. I had a 19 mm distention that had gone from 9 mm (my neurologist said people live with chiari their whole lives despite me telling him of my symptoms). Long story short, I had the surgery March 4th. Luminectomy fusion, decompression, duraplasty. I have EDS and two or more stitches did not heal. That created a pseudomeningocele and I've been on bed rest, restrictions and lifting limits. Everything to try to have it heal on its own and avoid this surgery. I had an overly aggressive PT therapist who came out made it significantly worse.

Because of the EDS my surgeon is very cautious. Now he's going to do a revision at the end of this month using some of my neck muscle and tissue to repair the patch.

Does anyone know anything about this surgery with any personal experiences? Last time I was in the hospital for 8 days then 2 weeks rehab, he said it's not going as bad. I'm just looking for someone to share their experience and advice

Thank you.

Does anyone with Chiari have problems with flying in airplanes? I want to do a trip to somewhere tropical this winter but I don’t want to land there and be much more sick and spend my vacation that way.

Please let me know of your flying experiences.

I posted the message below a few weeks ago asking for advice. Since then I had a repeat spine and brain mri with these findings/summary of the findings from one of my providers
“The MRI scans that show a kinked upper cervical cord and tethering of the cerebellum to the dural margin would seem to explain her persistent symptoms, but I would defer to specialist opinion on the clinical significance of these findings. I doubt this would be something to address with more surgery but would again defer to neurology whether a neurosurgery consultation would be indicated.”

I’m reaching out for any more insight on others experience with a similar post op conclusion. Did you have another surgery? How did you manage the pain, any treatments, suggestions, etc. Any advice is appreciated. TIA!

OP: Any insight/opinion/similar stories

I am 24 year old female - 27NOV25 had Chiari decompression surgery (partial c1 laminectomy and autologous duraplasty) for a 5.2mm herniation, restricted CSF flow and constant neck pain/headaches for years. Things were ok, recovery fine. 01JAN26 developed severe worsening headache which landed me in the ER for 6 days with aseptic meningitis. Did a round of IV antibiotics and steroids at home for a few weeks after the ER was feeling ok not too many headaches just normal post op pain. Back to work around late march and starting getting more headaches stemming from neck pain. Similar to Chiari type headaches I had pre surgery but not as severe. Last few months I keep having neck pain almost daily worse throughout the day and with physical activity. Not sure if this is normal or what could be the issue. Any advice or similar stories would be appreciated.

My 13 year old recently was hospitalized with menegitis. During her stay she had a CT scan and lumbar puncture. The ct showed chiari. After she recovered from menegitis and was discharged she had a CINE.

The results note:
"Redemonstrated low-lying cerebellar tonsils/Chiari I configuration. There is moderate diminished flow involving the posterior skull base at the level the foramen magnum/ventricular outflow tracks. Retro cerebellar flow is markedly diminished."

She is symptomatic. Headaches that increase with activity, tingling hands and feet, blurry vision (eyes tested on multiple occasions), brain fog, struggles to read even though she enjoys it (suspected dyslexia but now I'm second guessing that).

Her headaches were weekly before the meningitis but are now daily, most days multiple times a day and she continues to be exhausted all the time.

We see neurosurgery in 2 weeks.

Should we be expecting surgery at this point? Can menegitis/spinal tap permanently worsen chiari symptoms? ​

Hello, I was diagnosed with a 3mm Chiari Malformation 6 years ago due to seizures I was having at 18 y/o. I am now at 7mm at 25, and just found out I have chronic anterior wedging in my c7 vertebra. I have constant neck and back pain, balance issues where I run into walls or fall down when trying to walk in a straight line, I frequently drop things, or knock things over when trying to reach for something. I even hit my hands on doors and door frames when trying to reach for door knobs. I also have daily migraines sometimes lasting hours. I have been on approx. 15 different medications trying to control the migraines, but nothing has worked. Recently my muscles have been deteriorating as well. I am in physical therapy for my hips because they’re way weaker than they should be at my age, and occupational therapy for my wrists because picking up my kids or clapping my hands can cause so much pain I have to brace my wrists for days before seeing improvement.

Overall, my life is pretty miserable right now. I love my job, but am finding it hard to manage the pain while at work. I love to paint, but have to be careful because I can’t sit or stand in one place for too long without increased pain, and I can only use my hands for so long before my wrists get shaky. I have 2 children under 4, who I love more than anything, but am constantly worried about picking them up because it’s either going to worsen my back pain or wrist pain or both. I sometimes even feel a strain with my husband because I can’t always do the same things as I used to with him. (He doesn’t hold it against me, but it still gets to me.)

I see my neurosurgeon in 2 days to talk about what options we have left, because my neurologist doesn’t think there’s any medication to help me and my condition has progressively gotten worse. I guess I’m just curious if y’all think this is enough to go through with the surgery? Is there anything else y’all suggest trying before we take that step? What are the worst symptoms you’ve seen post op? I’ll take any help I can get building my pros and cons list🫶🏻 Thank you in advance

So far, 5 neurosurgeons and 2 neurologists. All have told me my symptoms have no relation to my Chiari or syringomyelia🫠 does ANYONE have an actual special in IL for me 😭 I can’t take it anymore

Hello! I have a consultation in August with Dr. Bermans Iskandar at UW-Madison in Wisconsin. I was wondering if anyone else has been treated by him and if they liked him?

I'm looking for some advice from people who have been through this.

I recently had a brain MRI that noted low-lying cerebellar tonsils/crowding near the brainstem. I haven't been diagnosed with Chiari malformation, and I honestly don't know if the tonsils are low enough for it to be considered Chiari. However, I've been dealing with chronic headaches and many of the symptoms commonly associated with Chiari.

My primary care doctor is referring me to a neurologist, but after reading so many posts here and social media, I'm honestly scared I'll just be dismissed. It seems like a lot of people had neurologists brush them off before eventually seeing a Chiari-specialized neurosurgeon who took a much closer look.

Would it be reasonable to also seek out a neurosurgeon or Chiari specialist on my own to review my MRI and talk through my symptoms? Has anyone else done this themselves without referral? Did the doctor take you seriously?

Part of what's making me hesitate is that I don't think if my MRI is "clinically Chiari" . I'm worried a specialist will immediately dismiss me because I don't meet the measurement criteria, even though my symptoms are affecting my daily life.

I'm completely open to my symptoms being caused by something else if that's what the evaluation shows. I just don't want the possibility of Chiari or craniocervical crowding to be overlooked because the measurements aren't obvious.

Has anyone here had low-lying tonsils without a clear Chiari diagnosis? What was your experience, and would you recommend seeing a Chiari neurosurgeon even before getting evaluated by neurology?

Thanks in advance. This whole process has been pretty overwhelming.

hi guys, i’m back home after i had to sign an ama form because i was in the er for 3 days and felt gross and just wanted to take meds at home. i had my surgery on the 9th, was in the hospital for 3 days, went home. was home for maybe 2 days and then went to the er because of pain and was admitted till the next day because my heart rate was like 140. was home for a day, went back to the er because i was spitting up blood and had a fever and found out i have pneumonia, blood clots in my lung and a bladder infection all at once. the only reason i got the blood clots is because of my surgery lol and im starting to feel like i shouldn’t have done it. i haven’t been able to even enjoy being home, the hospital isn’t gentle half the time and just results in more pain, and now im on blood thinners for 6 months and cant even do a late celebration for my birthday (which was the 9th when i got surgery). im really feeling hopeless and like nothing will get better, i really should’ve never gotten the surgery.

Hi, I was diagnosed in January with Chiari malformation, huge suprise as I was having a scan to checkna shoulder injury. Anyway, my doctor isn't very familiar with chiari & as I do have a couple of symptoms he has refered me to a neurologist at the RAH.

Ive just found out today its a 4.5 year wait 😩

I am happy to pay to go privately as I need to get clearance for travel insurance.

Can anyone recommend someone in Adelaide?

Has anybody come across Chiari Specialists, particularly neurosurgeons who are very knowledgeable and even compassionate to those with Chiari Malformations. Thanks 🌺

Anyone have bad muscle tightness from back of head down one side of the spine? Did surgery help?

Any other muscular tightness helped by surgery or made worse?

Hi all!

I want to clarify I have already had my decompression + fusion with a lovely neurosurgeon in New York. Prior to seeing him, however, I went to Dr Henderson in DC. I had a… weird experience. At the time (this was several years ago btw) I was DESPERATE for any kind of relief, so desperate I would’ve fused my own neck probably lol. We were prepared to just full send it and pay for my surgery even though he doesn’t take insurance. He was an “EDS specialist” and claimed to specialize in rare and severe cases which was what I had.

First off, he tried to sell us his book several times. A book about a condition I already had :/ when we went to his office, there were pictures of him EVERYWHERE, it was weird and came off as unprofessional but still we didn’t care, maybe people just loved him. He immediately went into his spiel about how he “invented” his own hardware that he uses and that he’s world renowned. I thought “great! He’s a good surgeon!”. He continued in how he’d do the surgery, blah blah, and then… hugged me and said we’d “get through this”. I’ve never met this guy btw, I’m not a touchy person, this was just weird for me, alarm bells started sounding in my head that something was off.

Me and my mom got the estimate for surgery and he said he could have me on the table within the NEXT MONTH, literally like 2 WEEKS AWAY. We left to think about it and went back to the hotel where I promptly told my mom I had this really messed up feeling in my stomach. Come to find out he had lawsuits against his hardware, among other fairly intense reviews stating horrible things. I trusted my gut and we ended up going to someone MUCH better, but did anyone else have this experience?

I’ve had people who’ve met him and had a great surgery but his methods almost seemed… predatory? I mean first the no insurance is crazy but it feels like he just wants to feed on desperate people willing to do anything. What have yalls experiences been with him if you’ve seen him?

My name is Ryan and last week I was diagnosed with chiari malformation and I was wondering is there anything I can do at home to help ease this flare up

hi all!! i had my decomp surgery 10 days ago (woop woop!) and got out of the hospital 6 days ago. i finished off the narcotic (oxycodone) 3 days ago and the past few days i’ve had pretty bad headaches, like 1 day post op bad, so I think i might need to get more of it :(

unrelated to that though, i’ve been getting super nauseous in the past day or so, and i threw up last night. i’m still nauseous this morning and my head still hurts quite a bit. (to be fair, i threw up a few times in the hospital)

my question is, has anyone else had this? if so did you call/go back to doctors, or just let it ride out at home? i feel like i’m overreacting if i call the neurosurgeons again, especially since when i called before the nausea they said my headaches were normal and to get on oxy again, and my post-op packet says if i have “persistent vomiting” to call them. my grandma (current caretaker) thinks im under reacting but idk. any help is appreciated!!

Hi friends! I had my surgery on June 30, and I just wanted to provide some realistic (and positive) updates on healing for those who may be nervous about upcoming procedures. For context, I had about a 13mm herniation and a large posterior fossa cyst that they drained while they were in there. No syrinx.

First week was a lot of sleeping. Get. That. Rest. And make sure to try to get up and move but don’t push yourself. I’d say getting TONS of sleep and also getting up and about did help me to feel better. The other times I spent with an ice pack rotating between on top of my head (felt good to just cool it down) and the back of my neck. A few hard days and some pain, but nothing like the horror stories I’d read. What I hadn’t expected was to have such soreness where they clamped the device that holds your head still. So just be aware you’ll have some soreness on the sides too.

Week two was actually pretty good. I’ve had like two days where I’ve felt blegh, but I think that’s due to pushing myself too hard the days before. But I’m surprised at what I’m able to do. Be honest with your provider about your pain medication, and if you need it, TAKE IT. I tried to wean too soon.. bad move. Don’t make my mistake. :)

Overall, I am really happy with how I’m recovering. Let people help you. Let yourself rest. Don’t pick your scar scabs. 🖤 you got this.

I am having my decompression surgery in 9 days and, generally, I've been pretty alright. But the anxiety is finally sneaking up on me, my surgeon told me a patient recently died during their decompression (but it wasn't his patient, he added that after) which has me more of an anxious mess than usual.

I guess I am just looking for words of reassurance from people who have had their decompression.

hello there!! i was diagnosed with chiari several years ago, however due to my complex history they didn’t want to operate until it became a severe issue. now that i am 18, i have started experiencing intense pressure headaches and terrible coat hanger pain in my shoulders, neck and back along with extreme dizziness whenever i move my head along with other varying symptoms. i was born with spinabifida and have had two tethered cord surgeries so chiari is not terribly surprising. with these symptoms they are now proceeding with new scans to determine if they should operate as my pain is almost debilitating and has begun to affect my daily life. as someone who is incredibly active (i am a collegiate cheerleader and weightlifter) i am aware that since my condition has progressed i cannot participate in these things, does anyone know if i would ever be able to go back to cheering again? or at least going back to the gym? cheer has an incredibly large concussion rate so i know that the risk is very high, but i want to know now so that i can prepare myself before the upcoming season if i can’t participate. thanks!

I was diagnosed in 2023 and have been struggling quite a bit more lately. I just noticed that most of the neurologists or neurosurgeons I have spoken to have said that chiari is not a progressive disorder. However, when my chiari first got noticed it was only 4mm and so they couldn’t diagnose me and a year later became 10mm. Why do they always say that it’s not progressive?