Recently, we traveled to New York City to see a neurosurgeon at Weill Cornell, as he reviewed my imaging and let us know I have chiari malformation. We knew craniocervical instability was a possibility as well, because many of my symptoms matched up and I have a suspected connective tissue disorder.
Our appointment went very well. He said, "your brainstem is being compressed from the front and the back like a sandwich, and this is likely causing many of your symptoms." He went on to tell us that just doing chiari decompression surgery would run the risk of me actually getting worse because I also have craniocervical instability and a retroflexed odontoid.
He works with a lot of patients with EDS, and said "you are the picture of EDS, I'm sure you have it" (ehlers-danlos syndrome). He prescribed a neck brace and said to wear it for 4-6 weeks, and if it significantly helps my symptoms, he'd recommend craniocervical fusion and chiari decompression surgery.
We then traveled to Maryland to another top specialist in CCI/chiari/EDS, and he had the exact same diagnosis: craniocervical instability, chiari, ventral brainstem compression, and ehlers danlos syndrome. He actually did a very extensive neuro and connective tissue disorder evaluation, which I go into more detail about in the video. Essentially, he said, your connective tissue disorder is cuasing your skull/upper neck to be instable, which is causing brainstem compression and many of your symptoms.
He also recommended fusion/decompression surgery, but is having me do PT for a while to get strong before surgery.
We are very thankful that we were able to see these doctors, and really hope that this surgery will give me a lot of my life back. More soon.