Hi i have chiari 1 and i am having a consultation with a neurosurgeon on May 12th for brain surgery. If anyone has been through this, any and all advice or comments are welcome. Thanks
Hi, I had decompression surgery April 21. It wasn’t as bad as I expected. I woke up in ICU with a really bad headache. The nurses were right there working to get the pain under control. Do know that it takes a couple hours to get it under control because they can’t use stuff like morphine. The reason is the body will react differently and you will end up with long term pain if it’s relieved too soon. They give you a drip/pump to take the edge off and after you pass the neuro tests and swallo tests they give you more by mouth until the dose is found. It’s bearable though. I compare it to the worst Chiari headache. Make sure you have a neck support pillow - the kind that goes around, not a neck roll. And make sure it’s the memory foam or therapeutic kind. Lots of soft pillows for home and maybe some to sit on so you don’t have to push off when you get out of a chair. I slept in a recliner until my stitches were removed. Limit visitors- talking and moving your neck induces pain. Rest and follow post op about not bending, lifting, straining. I followed all rules and I’m doing well
Thank you Liberty1
Don't let them talk you out of having Chiari. I've been through this- found the Chiari on an MRI. Talked to neurosurgeon who then wanted more testing to rule out other diseases. So I had cervical MRI and Thoracic MRI, Tilt Table, Vestibular evaluation (Balance) Lumbar Puncture (for possible MS) and neuro-eye exam. None of those found anything. So next was referred for a Cine MRI- which produces a video of fluid moving in and around the skull. Found that I had 4 mm herniation of left tonsil and 8 mm of right tonsil and CSF flow was obstructed. Which causes the symptoms. So I am now having decompression surgery. Took me since November until now to get this far and surgery is June 1.
Thank you Lindy for reaching out to me. I have been suffering crippling headaches since i was 16 and only got diagnosed 4 years ago. It’s been a long rough road but hopefully there’s a light at the end of the tunnel.