Basilar invagination

Hi everyone, I am wondering if any of you have basilar invagination and how does it affect you?

I have ben personally dealing with this symptomatic ally for about a year now. The cine mri all sow no progression , however my neurosurgeon finds that unlikely.

I have been developing more symptoms from a headache, to confusion over the past few months. I also have been wearing a neck brace, which had made a night and day difference.

Because of the difference in laying down with no symptoms and relief with a neck brace my doctor believes it may be a connective tissue disorder.

This all points to surgery… My doctor is going to take my case to his conference before a decision to operate is made.

My question is how did you respond to surgery if you did have and how has life been since.

It is also important to note that a sitting mri is out of the question, due to cost and proximity of the machine.

Take care

Sport

Sportcraze, there are a series of videos about cranio cervical instability and EDS on the CSFinfo.org site. Go to videos, scroll to metropolitan area, then see there are several to watch. The latest one sites a two year followup study of fusion patients. Have you had the decompression yet? I’ve been decompressed but know waiting for a diagnosis for CCI due to eds.
I’m sorry your symptoms are getting so bad.
Jenn

Also, you can type in the key words basilar… Or cranio cervical instability in the search area of the discussions tab, this will pull up quite a few past discussions.