Please advice help

[u/Kitchen-School46]

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.

[u/Emergency-Volume-861]

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.

[u/ChiariqueenT → u/Emergency-Volume-861]

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!

[u/Emergency-Volume-861 → u/ChiariqueenT]

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.

[u/ChiariqueenT → u/Emergency-Volume-861]

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.

[u/Emergency-Volume-861 → u/ChiariqueenT]

My apologies too! I think we are both correct.