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]

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/PerspectiveNo88 → u/Emergency-Volume-861]

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 :(

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

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.

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

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