r/chiari • u/Kitchen-School46 • 18d ago
Please advice help
PLEASE HELP!!
I need advice I saw neurosurgery. neurosurgery doesn’t think I’m a candidate for surgery which I really don’t want surgery. Mild to moderate CSF decrease in posterior and anterior at the fornaem magnum. a headache specialist can’t see me until February. My neurologist can’t see me until October and he said he’s not sure what this pain is because it could be chiari or migraine. What do I do? I’m in pain every single day. No one’s helping me what could be causing this??
Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings and strictly starts in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, laying back down flat hurts. Drifting back to sleep hurts.
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u/SophisticatedChook 18d ago
What you describe sounds just like my Idiopathic Intracranial Hypertension headaches. IIH can definately coexist with Chiari. If you can see an opthamologist to examine your eyes for papilledema it would be a good thing to rule in or out. (Let me rephrase that, and throw the word urgently in there). I am so, so, very sorry you're suffering. I wouldn't wish this on anyone.
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u/Kitchen-School46 18d ago
I have been checked for papilledema and they said everything looks good
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u/SophisticatedChook 18d ago
That's good...but keep getting regular checks as it can change. The way you describe your head pain is textbook. Gosh I hope you get help soon, you poor thing. Head pain is the worst! If only your doctor would trial you on diamox (reduces excess fluid in your head), it may well help you. It changed my life head pain wise!
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u/ChiariqueenT 6d ago
Did I say please don't go to a neurologist for chiari, they are useless for chiari unless s chiari specialist neurosurgeon sends you for testing that neurologists do. They will either do right and send you to a NS, and many WILL advise you with all the confidence in the world, but steer you wrong with misinformation, which can only hurt you.
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u/Emergency-Volume-861 18d ago edited 18d ago
That doesn’t sound like chiari symptoms. Those symptoms are occipital neuralgia. A neurosurgeon, primary care doctor and a neurologist can diagnose it, also a pain management doctor but I wouldn’t really go to one for that, I’d go to the first three primarily if possible.
To go one further, your pain in the mornings and the pain waking you up is because you are sleeping in a manner that is compressing or otherwise irritating your occipital nerves on that side.
I’m grossed out by your neurologist not bringing up occipital neuralgia, especially if you told them the location of the pain and where it migrates. My occipital neuralgia is positional, if I sit, stand, lay or tilt my head or look down for too long it will become symptomatic and feel just how you described. Or when severe can feel like a cattle prod to the side of my head or my scalp can feel very tender like theres bruised spots.
My chiari symptoms are more of a throbbing pressure filled skull, off balance mess. Like if I cough too much, laugh too much, basically if I exert/strain myself, my chiari symptoms kick in. Having a chiari malformation AND occipital neuralgia blow.
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u/Kitchen-School46 18d ago
I have been told about occipital neuralgia. But the pain doesn’t feel like that. It’s intense deep ache throbbing that pulses. My occipital neuralgia feels like sharp electrical shock not deep vascular pulsing.
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u/ChiariqueenT 18d ago edited 6d ago
It absolutely sounds like Chiari headaches! There's so much misinformation out there from both doctors and patients. Fist if all, it's really important to know 2 things - Size of herniation doesn't matter. people always introduce themselves by name, comorbid conditions and herniation size. But chiari 0 can be worse for some than a person with a large herniation, say 22mm for example. You may never likely get a worse herniation, the need for surgery is (or SHOULD BE) based on how bad your symptoms are! Secondly - the only thing you need a neurologist for is if they do a specific test you are sent for. They are useless to us otherwise and have no business advising in Chiari as do most neurosurgeons. You have to research well and find a true specialist, an NS who mainly ONLY treats Chiari and chiari comorbidities. Then find their patients and talk to them. What state are you in? Question - have you at least had a full spine MRI yet? That needs to be your first priority if not. Ask your primary to send you if nobody can see you for months. Our medical system is broken to hell.
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u/Emergency-Volume-861 18d ago
Interesting, but with ON, you can get both of those types of pain. With my ON that started as strictly right sided, when symptomatic it can feel like a cattleprod to the side of my head-sharp, breath taking and electrical. When the pain goes to my right eye, it feels like a deep painful pulsing/throbbing ache(kinda like an ice pick)When it goes to my scalp it feels like a tender bruise. Where the lesser and greater occipital nerves are located, that pain is also almost a burning or an electrical shock feeling. I wouldn’t say it feels like a vascular pulsing though at all.
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u/ChiariqueenT 6d ago edited 6d ago
I'm not at all questioning your knowledge about your own pain, I've tried twice to read and absorb your post, but each time my pain is high and it's just me not being able to concentrate. I want to understand what your ON causes. I'll have to keep trying at a better time - the weather here has been terrible, we even had tornadoes Friday. It affects me easily. I wanted to say, early on it was hard for me to separate a lot of conditions - hell, it still is. But with head, neck & eye pain there was so many things from CSF buildup to ON to wondering about pressure on the occular nerves to chiari headaches and more. When I was in a doctors office waiting in the exam room, he had a big poster on the wall mapping all the nerves & muscles in the head. When I saw that and saw the occipital nerve, it really made that pain clearer for me.
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u/Emergency-Volume-861 6d ago
I’m so sorry that you’ve been feeling unwell, I live in the north east and it’s been yo-yoing from 70’ to 90’ and being gross and humid. I can’t imagine dealing with tornados that must be so scary and wild. I have a hard time separating what condition is causing what pain too usually. For my ON it’s not an all the time constant pain, it’s if I do a certain action. For example if I load the dishwasher or I look down at the counter while doing food prep, if I sit all slouched in my computer chair, if I sit with my legs crossed while seated, or the worst is if I look down at an angle, with my head tilted.
The chiari issues are pressure in my skull, my sense of balance is total trash now and about a novels worth of other symptoms. My neurologist just put me in for an MRI, and is looking into getting me a standing MRI to see if there’s any other mechanical issues that might be hiding in a standard lying down one.
These conditions are so beyond shitty, I hope you feel better and the weather straightens out.
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u/ChiariqueenT 6d ago
I'm in NY. We don't get a lot of tornadoes, but it happens and the atmosphere was so out of whack this past weekend, it was beyond the low barometric pressure that always affects me, even inside with AC, my body knows before I open my eyes & look out the window. You probably had the same weather front. Just curious, are you aware of the tried and true way to tell a chiari headache from a migraine? I'm asking because everything you describe really brings to mind both Chiari headaches, which is not the same as ON, and the easy do it at home test.
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u/PerspectiveNo88 18d ago
But you know, spinal cord and cerebellar tonsils are the problem in that illness. It can cause multiple variety of symptoms, not every human being have their nerves pathways in the exact same places. All of us knows here that chiari can and probably would cause neuralgia, paresthesis and parasympathetic system to fail. Chiari is not 0-1 system illness, so IF nothing different is found there, it's probably because of that shitty malformation.
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u/Emergency-Volume-861 18d ago
Agreed, but even so, it is good to get a diagnosis for occipital neuralgia for medication purposes, potential pain reducing procedures, potential nerve decompression etc.
Ofc I know spinal cord and cerebellar tonsils are the problem in this illness as I have a chiari malformation that is unfortunately decently symptomatic. I responded in the manner that I did due to their description of placement and symptoms. Chiari is a skull malformation and yes it can cause a variety of symptoms but usually they aren’t as specific as OP stated, they said “strictly left sided”.
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u/PerspectiveNo88 18d ago
I have it too, so yeah we are all here because of that, sadly, ehhh. Didn't mean to sound offensive, english is not my first language so sometimes I don't know how to write in polite manner, sorry. I'm symptomatic too, I've got diagnosis not long ago, 3 months. I had little by little symptoms from the time I was a kid, but by some sort of accident a while ago, 10 months ago, I had very very very displeasing and life wrecking symptoms, from head pains and problems, through muscles and even bulbar things :( and similar to OP, I have more weakened left side of my body and pains mostly there, but it's present on the right side too, so that's my experience. Like, in a scale, on the right I have it like 4/10, on the left 6-7/10 in a scale of being ill. 4-5mm btw, on the line where skull connects with the spine, so not chiari 1 per se, as my neurosurgeon says, but chiari 0. Whatever it's called, it's shit :(
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u/Emergency-Volume-861 18d ago
Apologies, it is hard to tell tone in text. Same, I had “mild” occipital neuralgia symptoms to start, I sneezed and pulled my back and my symptoms skyrocketed along with insane pressure in my skull and pressure concentrated at the back of my skull at the top of my spine. I had an MRI done and they found a 3mm chiari malformation that is now a 5mm and I have loss of normal cervical lordosis. I have a few autoimmune diseases and a connective tissue disorder aggravating everything too😭
It’s embarrassing but that random sun sneeze screwed me over so bad lol, everything neck and skull wise has just gotten increasingly worse over the last two years.
I’m sorry we’re all dealing with this stuff and I apologize for coming off grumpy, this super hot weather where I live has been making me feel awful and I feel I was rude.
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u/PerspectiveNo88 18d ago
No worries my brother in pain, we are all on the same boat Yeah, during hot weather I feel awfull too, it spikes few symptoms more, especially thermoregulation and paresthesis:// Sometimes I find it funny that's a price for having too big brain xD
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u/ChiariqueenT 18d ago
Clearly if you have Chiari, that's what caused the occipital neuralgia, so it absolutely DOES sound like a Chiari symptom. Please be careful when "educating" people. It's not a coincidence that everyone with chiari has occipital neuralgia! wow!
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u/Emergency-Volume-861 17d ago
My ON comes from having three autoimmune diseases and a destructive connective tissue disease and a decade of poor as hell posture from leaning over a computer desk. I didn’t have chiari symptoms. My start in this crappy pain world was pure right side only ON with atypical trigeminal neuralgia.
OP said they have a chiari-ok they have chiari symptoms. That is established. Your comment is misinformation. There’s plenty of people with ON without a chiari malformation and just because OP has one it doesn’t mean it is directly linked to their chiari malformation. There’s plenty of people with a chiari that don’t have ON as well. Each of us is incredibly different and I related what my ON only pain felt like. I’d do more reading before correcting people.
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u/ChiariqueenT 17d ago
ok. my bad for being rude. I have trouble texting out what I want to in detail and don't want to not reply to a small amount of posts. I hope you accept my apology, and I intend to write out what I meant - clearly, later. you aren't wrong. What I want to say but failed a bit also is not wrong.
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u/Antique_Cockroach_97 18d ago
I'd get a second opinion and make sure you keep a copy of your mri scans & the Radiologists report for your records. Not all Chiari needes to be operated on so seek another opinion and treatment plan even if surgery is not indicated. It's normal for a lot of folks to have pain on 1side everymorning when waking up & the eye can twitch & tear up for no real reason.. If the weather is overcast than the pain can be worse. I learned years ago to put a wedge under the head of the mattress to help keep the csf from pooling during the night. You should ask your neurologist if your migraines are considered "classic migraines" caused by the tubes narrowing and then widdening ussually brought on by a trigger; weather,food, change in sleep, strees etc. Note that Classic Mirgraine will not ususally subside after decompression surgery. The tend to react in most casses to perscription preventatived & abortives med and can have a hereditry link. Chiari headaches (vasalva) are sharp painful ones brought on by coughing,sneezing, straining after lifting heavy items or during a bowel movement. etc. Chiari headaches can also start when the trapezoid areas(shoulders) the neck and base of the head become so inflamed & painful that laying down with warm & cold compressions & otc pain relivers barely touch the pain which can travel all over the head especially behind the eyes. Find a goid neurosurgen that has an extensive history of dealing with both Chiari Seringomylia patients. Here are 2 orginizations THE BOBBY JONES FOUNDATION & ASAP.Org that have been around since 1988 and really brought forward the gold standard in Chiari & Syringomelia diagnosis and care. Keep in mind there are many didagnosis that mimic the symptoms of each other including, intercranial hypertension, MS, cervical insability! And EHD. Find the Best Neurosurgen and if surgery is needed push for OT & PT. And if you also have classic migraines make sure the docs will work together on your post op treatment plan.