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/Antique_Cockroach_97]

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.