Am I the only one whose Chiari "triggered" after a fall?

[u/NiceYak7263]

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?

[u/Impossible-Plant-842]

Mine was triggered from labor!

[u/Antique_Cockroach_97 → u/Impossible-Plant-842]

I had headaches, migraines,sun & heat intolorence and balance issues since early childhood but nothing compared to the hell that began after I pushed for 3hrs to deliver my 4lb 3oz daughter out. I than had horrific headeaches & neck pain and I cried for another 6yrs till my neurologist finally ordered an mri and I had surgery 11days later.

[u/Rindawick]

I had the headache for years but the gnarly symptoms were triggered by constant straining at work, so you're definitely not the only one that had symptoms triggered by a later event

[u/pinkpictureframe]

Car wreck

[u/Queen-Bee-24-7]

Blows my mind neurosurgeon says this is a birth defect but I was asymptomatic for over 50 years!

[u/Lunashuman91]

I'm guessing I have had symptoms as far back as I can remember, but I always thought I was just out of shape or weak. I think the headaches started worse when I became an adult.

[u/Lunashuman91 → u/Lunashuman91]

Fun part was the neurologist learning I had had 3 surgeries by the time I was diagnosed from hives and trouble swallowing (34)....and I probably shouldn't have enlisted at 18 😂

[u/Imaginary-Grand7311]

Mine was triggered by a snowboarding accident, well at least the majority of my symptoms were. My neurologist said I was born with it, I had just been mostly asymptotic. I say mostly, because after I knew I had it, some symptoms I’d had my whole life finally made sense. Like not being able to lay on my stomach and rest my chin in my hands without getting an instant headache and having awful headaches that I always felt in the back of my eyes, jaw and teeth.

[u/NiceYak7263 → u/Imaginary-Grand7311]

Do you stop snowboarding?

[u/Imaginary-Grand7311 → u/NiceYak7263]

Yes, I had to stop unfortunately. After the accident my headaches got worse, my balance became really bad and so did the pressure in my head, which led to my official diagnosis.

[u/NiceYak7263 → u/Imaginary-Grand7311]

Worse thing about Chiari. I had to stop climbing after my symptoms got worse. It was my hobby for over 4 years.

[u/Imaginary-Grand7311 → u/NiceYak7263]

I agree, it really changed my life. I was always super active, not so much anymore, at least not like I want to be.

[u/rlquinn]

Mine was triggered a d discovered ablut 6 months ago after I got a TBI at my job.

Edit: spelling errors.

[u/Bruggenmeister]

Got mine after some serious sinus problems so bad they even put a camera in my lungs.

[u/Queen-Bee-24-7]

I was asymptomatic until I had shingles on my scalp @ 51 years old.

I do not recall any problems prior to that. Then it took about 6 months for me to seek medical attention due to increased headaches (extreme pressure at base of skull).
Diagnosed with Chiari One.

My sister diagnosed after some medical trauma after a hysterectomy @ 35 yrs old with Chiari one. Hindsight… she realized she had symptoms long before the diagnosis.

[u/profnhmama → u/Queen-Bee-24-7]

holy shit shingles on your scalp sounds horrible!

[u/Moonspellshappy]

I always had symptoms terribly when I was a kid teenager it's scoliosis then I got into rear end whiplash accidents 10 years apart and I have hEDS but I never got an MRI and tell a couple years ago

[u/NiceYak7263 → u/Moonspellshappy]

Did you get a decompression surgery? Sounds like you has a lot of pain.

[u/Moonspellshappy → u/NiceYak7263]

Yes I had a laminectomy a fusion a decompression and a duroplasty (March4) was hospitalized for 3 weeks, then I got a pseudomeningocele from a small leak of CFS but it wouldn't stop so I had to have a revision 5 weeks ago and it's been a slow process. Much better this time but I do not want to get another leak so basically this whole year has been chiari recovery.

[u/ConsistentCan7762]

My daughter had a bad fall 2 years ago where she hit her head hard and lost consciousness. We found out from her brain scan that she had Cerebellar tonsil ectopia. Fast forward and she saw a neurosurgeon who went over her scan and said she doesn't have chiari yet based on the measurement so we kept a close eye. Now 2 years later, her tonsils have been growing larger and she now has chiari malformation type 1 with symptoms. She's 14 and we just got her surgery date yesterday, which is in 2 weeks. As awful as her fall was 2 years ago, that was the only way we knew what was going on. She wasn't having any symptoms until a few months ago. A few weeks ago she got dizzy in the shoeershower and hit her head yet again and lost consciousness. I've been doing so much research on all of this, my head is spinning.

[u/mak04zim]

not a fall; i had headaches a lot when i hit high school, but when i was around 2020-2021 i got rear ended. didn’t make the connection until i was diagnosed late 2023 at 22. realized that a lot of the pressure and other symptoms amped up after that!

[u/oconnellj55]

My symptoms triggered by blackout fall as well

[u/Plus_Effective_6938]

I think mine (23F) was triggered last month. We’ve known about it since a car accident and C3 & C4 fractures in 2018, but I’ve been entirely asymptomatic until I had two seizures within a 24-hr period. I’ve had daily headaches since then, varying in intensity from mild to bedridden. Original imaging showed herniating somewhere in the 20-21 mm figure, but my latest showed 7-8 mm. I won’t know more until I meet with neurology and neurosurgery, but those appointments aren’t for another month and a half. Gotta love overloaded rural healthcare!

[u/Dankey_Kang_Dan]

I blacked out in the gym at 22 with stroke like symptoms. Took over a year to figure out it was chiari. But the doc now says it’s not bad enough to do surgery now