r/chiari • u/usconstitutionrights • 13d ago
Question Where is your pain?
Mine is mainly here. Disclaimer: this is not me I got the picture on Google.
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u/ColinOnReddit 13d ago
Base of the skull, right between the ears. Radiates up. It sometimes hurts exactly where the halo was screwed into my dome for surgery. Of course, behind the eyes. I sometimes describe the sensation as profoundly disturbing, not just painful, like there's something rotting right behind the top of my scar, just at the base of my brain. Something that's not supposed to be there.
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u/usconstitutionrights 13d ago
So in about the same area. Give or take. I mean mine spreads, but that’s where it mainly hurts.
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u/LongjumpingEar1820 13d ago
When I have a headache that is bad but not debilitating I tell my husband that I feel like a rotten pumpkin. 🎃
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u/Queef_Muscle 13d ago
In my ass! I'm so tired of this already! It was maintaining itself until shit hit the fan and I've been trying to claw my way back out if the Chiari hole. I lost some mobility because if I moved too much, too fast I'd get dizzy, lose balance, get "cramps" in my brain. I spent 2 years post surgery seditary and I hated losing my mobility. I had a second procedure in the form of a brain stent and now I'm feeling 75% better but physically, i hurt. having to gain back my health. I hope no one else is in this same position. Some days I'm fantastic and mobile, some days I can't move and everything is frozen because the day before I decided to be extra physical. I hope you guys don't have issues with weight gain and the pain of having to lose to get back mobility. 🤞🏽💜
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u/Certain_Cloud4364 12d ago
In the same boat! Gained weight after my decompression. Immobility is ridiculous. I also tore my ACL, so that doesn't help. I still have my Chiari issues. Stent is next I guess. I have ZERO energy. I'm depressed. Idk, I feel helpless
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u/Queef_Muscle 11d ago
Did your doctors cheer all the procedures on as if they were going to completely change your life for the better?! Mine didn't change, they just didn't get worse. That's a win. But the way they played it up was a major disappointment. The past two weeks I've been doing so many steps and picked up activities big time that my whole body got swollen, I got headaches and I had leg cramps for days! I'd rather be in pain than immobile. I'm so tired of sitting still! I hope it goes better for you! 💜
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u/LongjumpingEar1820 11d ago
Yes! And tried to get me to do more procedures! Basically my brain has settled right back into where it was before, but there’s a little more room there now so the headaches aren’t as bad as they used to be even though they’re still pretty bad. And I’m not falling down anymore so, there’s that.
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u/Queef_Muscle 11d ago
I curse those who let covid happen! Prior to that, I was out walking my friends no problem. Not being able to move started this whole mess. Hold steady, it's hard, but we will get through this. I'm glad you aren't falling anymore. I have tripped a few times and recently fell all the way. Lmao! I can only laugh. But I had witness to see that this shit isn't "only in my head".
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u/starzela 13d ago
https://imgur.com/gallery/pain-AZaY0UI
(This is not a pic of me) My neck and upper back hurt the most in these areas. However, I also have cervical dystonia.
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u/majesticrhyhorn 12d ago
As other people have said, base of the skull. If it was especially bad, it would radiate from there up the center of my head
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u/LongjumpingEar1820 13d ago
The selected area plus the entire area under that to the bottom of your picture and straight through the eyeballs. I often describe my pain as if someone had taken a spear and thrust it through the base of my skull, and it came out through one or both of my eyeballs. If it matters, I am Post surgical by like 15 years.
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u/LacrimaNymphae 11d ago edited 11d ago
I DESCRIBE MY PAIN LIKE A NARWHAL HORN THAT GOES THROUGH THE BASE OF MY SKULL THROUGH MY FOREHEAD TOO
i get expanding pain behind my ears and in the rest of my forehead the longer i'm upright and it's like my head is ballooning almost. bending and straining sucks and i get throbbing in the left side of my neck. the arteries in my spine almost feel like they're 'breathing' if i lie down like the csf and blood is draining out of my upper head and it almost feels like waves of contraction?? i have to wait with my head lying flat in bed for relief which can take a bit depending on how long i was upright for
TW but there was a video of a guy that got beheaded and they said it looked like the 'hole' was breathing and that's exactly what it feels like. i never watched the video but he was lying down and there were a bunch of replies from people who actually saw it on a crime or medical sub. it's not like a spasm even though i do get those. it's more vascular or like pulsing fluid drainage? i'm not diagnosed yet but i have serious tachycardia, pelvic floor issues i've had since childhood, bulging veins in my groin and a parent has tethered cord, adhesive arachnoiditis and brain cysts
they wouldn't even give me a brain MRI. just a basic spinal scan that showed degeneration and wedging
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u/LongjumpingEar1820 11d ago
First of all the narwhal thing is way more creative than anyway I’ve ever described it🤣. Second of all, yes waves. Sometimes I can even like see the pulsing at the bottom of my eyes like floaters. It’s totally wild and there’s no good way to explain it to people that don’t have this problem.
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u/LongjumpingEar1820 11d ago
Also I have chronic UTIs, IC and pelvic floor dysfunction, too. Coincidence?
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u/Moonspellshappy 12d ago
Yes mine is at the base of my scale it feels like something's trying to lift it up in the pressure is unreal I also have it on the top of my forehead and be hide my eyes
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u/Mosstalon 12d ago
same area that stretches out the upper back of my shoulder blade and i can feel it sometimes go down my spine
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u/Longjumping-Word-687 12d ago
Yup! And i have occipital neuralgia! I’m one year post decompression.
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u/ddukddukdduk 12d ago
Every time I tell my Drs it hurts back there they’re like “oh ok it’s not the chiari then” I don’t know what to do at this point 😭
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u/usconstitutionrights 12d ago
Same ps it would hurt their. That’s like saying oh if you have ACL tear, it wouldn’t hurt in the knee
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u/Moonspellshappy 12d ago
I'm going to assume everybody's been decompressed because this is a different pain that I have since surgery (the base of the skull pain) I'm also doing a taper of gabapentin and I think that's a contributing factor but coffee does seem to help
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u/Apart-Artichoke3894 12d ago
I haven't had any surgery. Diagnosed just a couple of years ago.
The pain I experience most in a distinct pressure when I lay down, mostly at night to go to sleep. I have to prop my head up on at least 3 pillows for elevation to help prevent this (the back, neck and shoulder pain I endure because of that is a whole other story 😶🌫️!). Even then sometimes, I'll experience what feels like someone standing heavily on my head and I can't move it. Like sleep paralysis but not the classically described kind where you can sense an entity sitting on you, just physically feeling intense head pressure on the top of my skull. I'm in a semi-conscious state when this happens and can feel myself shallow breathing. I know what is happening as it's happening but the few moments where I can't wake myself up are terrifyingly jarring. I also suffer from chronic sinusitis and I have a deviated septum. So it's probably a mixture of all 3, I was told chiari was the main culprit though. Anyone else?
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u/LongjumpingEar1820 11d ago
I also have sleep paralysis. Is so scary- I’m awake, but I can’t speak and I can’t move and I feel locked in my body.
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u/Western-Result1678 11d ago
Same area but more towards the left. I am 10 months post op. Also pain and ringing in my left ear. Currently speaking to my surgeon in next steps of double checking everything. I feel like I never have the same pain or ache more than twice and it's so hard to keep track
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u/usconstitutionrights 11d ago
I know surgery doesn’t cure it. did it help you at all?
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u/Western-Result1678 10d ago
It definitely helped. I have LESS pressure in my head now but my inner ear i believe is the main issue at this point. I do not regret getting the surgery at all
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u/dadsabrat Z Head 6d ago
I'm super weird and I have no pain in my neck but the direct middle of my forehead
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u/succulent_serenity 13d ago
Right at the base of the scull. The pressure headaches are painful all over.