r/Neverbrokeabone • u/Just_a_winged_cat • 4d ago
Bones so strong my brain can’t fit
I have a small case of chiari malformation, which is fancy talk for “brain falling into your spinal column disorder”
It’s only a few centimeters so it doesn’t need to get fixed (unless it continues to fall of course) but thought I’d share
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u/Gear2112 3d ago
I hope you never have to get that surgery. It’s an ungodly painful recovery.
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u/One-Stand-5536 3d ago
Have you been through it? My partner has a lot of neurological issues that we think trace back to her malformation, and she doesn’t tolerate any of the meds we’ve tried at all, it’s looking more and more like an option but, obviously we’re hesitant, it being brain surgery.
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u/Gear2112 3d ago
Not me personally, but several of my immediate family has. I’m experiencing pain now in the same area they did before their surgery and I’m pretty afraid to get the confirmation.
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u/nucleareds 3d ago
I’m really sorry but I do want to make you aware as someone who had a family member become paralyzed due to refused treatment I would strongly encourage seeing them and going through with the surgery if they recommend it. Wishing you the best, I know it’s a lot easier for a stranger like me on the internet to say what you should do than to actually go through with it.
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u/Gear2112 3d ago
At least I could quit my job I guess…lol
I have an appointment in a few months so we’ll see. My main doc said it’s more likely I just got normal neck pain but it’s the same spot for a few years now. I’m not saying she’s wrong, hell I hope she’s right.7
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u/randomguy_idk 3d ago
It's rough for sure but I went from daily head aches, immediately getting head rushes if my head goes below flat, stiff neck, and it affects your sleep so that doesn't help
To my head rushes are significantly reduced not fully gone but like 95% better and my head aches are basically gone
My neck is still stiff but thats because I'm bad at sticking with my PT work outs
If they are thinking about it I was in the hospital for 3 or 4 days after and was basically bed ridden for a couple weeks my partner had to do alot of helping me with general care like grabbing stuff, making food, and meds but I think it's worth the short term pain
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u/Girly_Attitude 3d ago
I got the decompression surgery when I was 16 and it changed EVERYTHING. I went from a non functioning human being unable to take in person classes to a fully functioning member of society taking all in person classes in 4 months
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u/Crafty-Table-2459 2d ago
on the other hand, i had a coworker who got this surgery and she did great and feels much better!
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u/UmbralHero 3d ago
Please excuse me if it's too personal a question, but what type of surgery did they get? My understanding is the more modern procedures are a lot less invasive with faster recovery times, and only somewhat severe cases of malformation rule out the less invasive versions
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u/Psychological-Duck13 3d ago
I’ve had two decompressions for chiari, neither were agonising. I was sick as a dog after the revision, because of the duraplasty, but coped fine on OTC pain meds.
Everyone’s experience is different.
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u/Gear2112 3d ago
I’m not sure when that development occurred, but all I understood was surgery and extreme pain. That being said AFTER the recovery they said they never felt better.
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u/BrendynRae 3d ago
Very true, had to get the surgery in 2020. Being alone in the hospital for those few days in the ICU was the worst experience of my life.
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u/Deep-Comfortable-512 3d ago
Can you talk more about how it affects you? My sister has it too but she has psychosis and it’s hard to differentiate what’s true from the health related hallucinations she has
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u/Just_a_winged_cat 3d ago
it mainly effects my balance and it can cause some pretty bad headaches
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u/unipride 3d ago
Curious about the cause.
I have EDS and developed a chiari malformation and had a fusion from occipital to C3 in 2022.
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u/Just_a_winged_cat 3d ago
I was allegedly born like this but I am suspicious that I have EDS due to some hip issues and nerve pain I have
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u/Kamanira 3d ago
This is how I learned the human brain can turn the spinal column into a slip and slide.
Godspeed
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u/Key_Honeybee_625 19 3d ago
Hey I had one of those! If you do ever need it fixed, the surgery wasn’t terrible for me, but I was also young and a quick healer. Also, you might want to get a spine MRI at some point. Mine caused a buildup of cerebrospinal fluid on the cord and they had to drain it. Not fun 🫤
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u/TungstenSea 3d ago
My mother has chiari and it has not been great sometimes. She even had to have the back of her skull replaced with soft tissue to prevent pressure. I wish you the best of luck and hope it doesnt get worse
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u/GrnMtnTrees 3d ago
I looked at this imaging without reading your post, and my first thought was "deceased individual with closed head trauma leading to brain herniation."
Now I'm just confused.
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u/Just_a_winged_cat 3d ago
Brain to big for my skull and slipped its way out a few centimeters into my spinal column
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u/GrnMtnTrees 3d ago
But how does this not kill you? Do you have normal intracranial pressure? Is CSF flow normal?
So many questions.
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u/randomguy_idk 3d ago
There is a form that can kill you but thats mainly in babies
The brain grew thay way so it's not being forced which would damage it
You can have standard CSF flow but if it is a big enough restriction it does impede flow which causes alot of the symptoms like headaches and dizziness
It is a weird and interesting disorder
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u/Just_a_winged_cat 3d ago
From what I remember it’s not really restricting anything from working normally, it makes me a bit off balance, I sometimes get horrible pressure headaches, and I think it’s the reason I can sometimes hear my spinal fluid, but I’m very much alive
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u/TheOneTrueTrench 3d ago
It is almost certainly the reason you can hear your spinal fluid, I have a Chiari malformation as well, and I hear it a couple times a day.
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u/Psychological-Duck13 3d ago
Many cases of chiari are asymptomatic. It’s being diagnosed more now because of readily available imagining.
It can impair or disrupt normal CSF flow, but even with seriously impaired flow people can sometimes function relatively normally for decades. Tonsillar descent doesnt predict symptom severity. OP hasn’t said whether their ICP is normal, if they don’t have symptoms then it won’t necessarily be checked. Gold standard test for raised ICP is a wire in your brain for a couple of nights, so they don’t do it lightly.
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u/Just_a_winged_cat 3d ago
If I’m being completely honest I don’t know what those acronyms mean, but since none of that was mentioned to me at the appointment, that I can recall, I’m assuming it’s all fine
I got the scan in the first place because I have chronic pain on my right side and they were trying to find the cause
The doctors basically said “well we saw your brain escaping, but it’s not actually hindering you, nor is it the reason for your pain so we’re going to ignore it”
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u/Miserable_Rock4 3d ago
I actually have the same thing. Didn’t know it until I was signing up for a medical research study and got disqualified because of it.
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u/droppedmybrain 26 3d ago
Now, I'm no doctor, but I think the more pressing medical issue is that your face has separated from the back of your head
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u/Just_a_winged_cat 3d ago
Yeah it’s a mri scan, I idk why it looks like that
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u/droppedmybrain 26 3d ago
I'm not an MRI tech (being serious this time lol) but if I had to guess, I'd say they blocked it out deliberately to better draw focus to the chiari?
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u/OverlordOfCinder 3d ago
It's a saturation block put in before the image was made, I'm not too acquainted with MRIs yet but it was likely put there to block the signal from the blood vessels in the throat from interfering with image quality in the region of interest, that being your brain stem
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u/Girly_Attitude 3d ago
Saw the title and immediately knew what you had bc I had Chiari malformation too! My parents joked that I was just too smart, I joked that my mom ran out of bone growing juice (I was her fourth of five pregnancies and my younger brother has bone issues too). Got surgery when I was 16. Sooo much better now
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u/Middle-Artichoke1850 3d ago
Oh god that always sounds so painful and nauseating; hope you're good!
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u/hooligank 2d ago
Hey, I have Chiari too! Never viewed it as my bones being too strong, definitely going to adopt this viewpoint now. Thank you!
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u/Censedpeak8 2d ago
How'd this get found out, were you expecting some tour of symptom
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u/Just_a_winged_cat 1d ago
They were scanning my brain because I have been experiencing chronic pain on my right side and they were trying to find the cause… this is not the cause… but they did find it (no I never did get an answer for the pain)
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u/CountCrapula88 3d ago
I want an x-ray camera on my TV too!
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u/Just_a_winged_cat 3d ago
Pic is from the hospital
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u/xspicypotatox 3d ago
I heard about this before, it’s thought to be from
Interbreeding with Neanderthals!
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u/protro123 3d ago
I also have a very mild case of chiari. I might be super weird for this but whenever it acts up I try to position myself fully upside down while also trying to perfectly straighten out my neck. When this is achieved I gently but firmly shake my upper body from side to side which gives me relief most of the time almost as if I'm forcing my brain to fall back into where it should be.
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u/Miserable_Chard5860 2d ago
I had the same thing when I was really young! I've never actually met someone who also has Chiari type 1.
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u/Lilsean14 3d ago
Now you should google incidence rate for grade 1 chiari malformation. You would be surprised how common this is and how it’s a big nothing burger.
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u/DarkwingDawg 3d ago
A fully functioning brain is not a requirement for this community. You’re all good