Tired of the pain 😫

Hey everyone. I am a year post shunt surgery. I have chiari malformation and hydrocephalus. When the shunt was placed after healing I was fine. A few headaches but nothing major. Fast forward til now, I’m in some sort of pain almost constantly. I have extreme head pain and pain meds do not help. The head pain causes extreme nausea also. I’m so scared to lose my job because of needed absences and how to make life work like this.

I feel for you. I have chiari 2. I have days when coughing and laughing hurt. I’m trying to eat right, lose weight, etc. it seems to help somewhat. I take non aspirin pain reliever on days of pain. I can’t take prescription painkillers cuz it makes me loopy. Stay strong

Dear Cat92,

 Was your surgery only to put a shunt in???   So - you are saying you still actually have full-blown Chiari's Malformation?!?!  If so - it's no wonder you're still in constant agonizing pain.

If you still have that extra ‘brain ooze’ (the cerebellum that isn’t able to fit inside your skull - so it oozes out the base of your brain onto your brainstem/ spinal cord), then your spinal cord is still get that 24/7 squeeze. It doesn’t like that. I always have to snort at the Lyrica commercial when they say they "suspect’ fibro being cause by “overactive nerves…” And, well - if your spinal cord is getting a genetic pinch - it’s going to howl. And, it makes you howl from head to toe. The Central Nervous System affects your whole body, so your symptoms - and the pain - can end up so varied. That’s why no two Chiarians have the same symptoms. Our CNS is so individual.

Because I went misdiagnosed for 10+ years, my brain doesn’t know how to turn off some of the pain - even post decompression surgery. I have to take a small dose of amitriptyline (3-10mg) which snuffs those ‘phantom’ nerve pains. Soem folks like noritriptyline - or gabapentin, etc. All non-narcotic. But, prior to decompression surgery, NONE of those meds worked because cerebral-spinal fluid was plugged by the Chiari ‘brain ooze.’ Once that plug is removed - once you are decompressed - you don’t need a shunt anymore. Fluid can flow like normal - and meds hit the spot. I hope you can get out of the mire of pain.

I did just have a shunt placed. They have not done a decompression. So just an update since this point I have went to many appointments. There seems to be no optic nerve swelling as there was before shunt surgery so they are trying topimax and neurotin for the pain as prescribed by the optic neurologist. Mind you these do absolutely nothing for the head pain. Still has been no checking of pressure inside the skull or talk of fixing the chiari. I am still unable to get in to see the actual surgeon who specializes in chiari that placed my shunt I have only seen his nurse who has told me there is no medical reason I cannot work. Meanwhile I struggle to even get out of bed and walk my dog the one time while my fiancé is working. I am completely unable to sleep because of the pain. I feel I have become useless and unable to do much if anything at all. I’m so confused as in what I should do. I have been in constant pain for almost a month now and it just seems to be getting worse.