Have any of you had any experience with Chiari malformation?

Not exactly the same, but a friend of mine has hydrocephaly and has since very young, he also had to have a shunt put in and needs it checked over on occasion. Has led to some scary episodes when it’s gotten blocked but he’s been fine overall. And, you know, quite a bit better than the dead that can result otherwise.

How long did it take for him to fully recover from the surgery? And was it awful?

Oh, that I couldn’t tell you, I’m sorry. The shunt was put in far before I knew him. He did have to have emergency surgery a few years ago, though, when it was blocked. The lead up to that was quite upsetting and painful for him, but once the surgery was finished I’d say he was okay in less than a week. Not sure if it’s comparable, though, but I believe that did involve replacing the shunt. No removal of bone, though.

Not directly with Chiari malformation but with a somewhat related issue, spinal stenosis in a friend of mine.

In doing research about spinal stenosis, I discovered that there is now a type of minimally invasive “keyhole” surgery which is miles ahead of what had traditionally been done for years.

Evidently there is also a similar less invasive surgery for Chiari malformation as well but not a plethora of people doing it.

However, if it were me, I would certainly do everything I could to find the nearest qualified person to do the significantly less invasive procedure.

I have no idea where your friend lives, but if you research the term “minimally invasive neutosurgery” it might give them another option to standard surgery.

I’ve evaluated people for balance disorders, and in one instance in the 1990s the results led me to recommend further testing to check for a Chiari malformation, and I was sadly correct. I am unsure what the treatment and outcome were in that case.

A friend of mine had a shunt placed last year for pseudotumor cerebri, and she recovered quite well. It made a tremendous improvement in the symptoms she was having because of the pressure on the brain. It all happened so fast and she was understandably scared; but allowing the pressure in the brain to build can lead to permanent damage, so it is crucial to act quickly.