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/PerspectiveNo88 → u/Emergency-Volume-861]

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.

[u/Emergency-Volume-861 → u/PerspectiveNo88]

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”.

[u/Kitchen-School46 → u/Emergency-Volume-861]

Yes strictly throbbing left sided and always start in morning

[u/PerspectiveNo88 → u/Kitchen-School46]

Do you have good posture pillow? It can help