Mrs. Has been having some issues in recent years and finally had some imaging done revealing the root issue. From what I understand it's an abnormal shape/growth of the skull near the brain stem causing pressure and other issues. We're waiting to get in to the neurologist in a couple weeks, meanwhile she's on some medicine that is supposed to relieve the symptoms. Internet reading says there's basically two roads forward: 1- install a shunt to let the excess fluid drain into the chest cavity, or 2- decompression surgery, as I understand removing a bit of the bone causing the issue. She has anxiety issues and this looming surgery is causing a bunch of stress.
She keeps reading a bunch of things online but from what I've seen it's largely Facebook level scare stories and complaining. I'm not trying to discount the experiences, but there's a pretty large disconnect between what her regular dr said and what we're seeing online.
Has anyone here had experience with the issue or know anyone who has?
I've been friends with/know a guy with all kinds of malformations and he's had a shunt for 35+ years? And has lived a happy normal life. I know it sounds scary, but if she needs it? Get it done.
I have aquired Chiari. normally this is an issue identified early in life. i still dont know why i had the issue. ended up with the shunt I recommend going this route before the decompression surgery. Let me know if your wife wants to talk over the phone about it and we can share phone numbers.
it was night and day difference after the shunt surgery. I had constant migraines for over a month before the surgery. After seeing my primary doctor and having a CT, I was in surgery with neurosurgeon in 2 weeks for the shunt.
I would suggest trying to get in with Neurosurgeon not neurologist. neurologist will only push meds. meds won't normally solve the issue and needs surgery.
My dad had this later in life - surgery in his mid-70's - took card of it. Go surgery - you won't look back.
My cousin has it, and it has been a very long, and difficult road. She deals with a lot of pain, and as been through many surgeries. She has tried everything. Her mother also has it, but it has been more manageable.
Have a friend with something like this who had terrible migraines until he got a shunt put in as a teenager and he's been fine since.
This is my Chiari before on right and after on left. The white is the cerebral spinal fluid. Before the brain stem was blocking the flow, after the brain stem has receded allowing the flow to resume. The Neurosurgeon said when he drilled through my skull, the fluid sprayed out it was under so much pressure.
My shunt was installed in 2013. I just had a follow up CT done with my Neurosurgeon and it is still operating as it should and fluid flow is good around the brain stem.
