I took bug to see his neurologist today for the first time since his MRI on the 28th. So this was the first look at the scans he got. The neurologist said that he has a boarder line Chiari malformation, dysautonomia and possible Ehler’s Danlos. From what I have heard there is no such thing as boarder line Chiari what do you think? We meet with the neurosurgeon on March 11th and I was told he would order another sedated MRI that will check his CSF flow and will look at his whole spine. The neurologist does not think decompression is necessary right now but we will see what the surgeon says.
Agree with Rebecca, call it what ever you want but if your brain is below the foramen magnum it herniated. Glad they are on board with the conditions but this makes it an absolute that he is screened for CCI. I’m not sure if I’ve already told you about these videos so apology if I’m repeating myself…
Cranio cervical instability and Chiari and complex Chiari patient
I mentioned the fact that bug sweats the instant he falls asleep and it looks like a tornado has slept in his bed, this didn’t seem to strike a concern about sleep apnea although I did mention it as a concern. He doesn’t snore and honestly at five yrs old I don’t watch him sleep anymore.
The neurologist is not ordering the MRI to check CSF flow and look at his whole spine he said the surgeon would do that. I get the impression that the neurologist doesn’t know a lot about Chiari and is therefore attributing his symptoms to the other two things I mentioned. He says his Chiari is asymptomatic.
I just wish we didn’t have to wait until March 11th to see the surgeon, I want answers now and it is driving me nuts not knowing.
Thanks for the support
It can take years to get the testing done that you are getting done. Sounds like you have some knowledgeable docs. Hope all goes well. I agree that a 3 mm could be symptomatic and a huge one not symptomatic so I don’t think size should measures Whether or not to do the surgery. It’s really all up to symptoms