Update - Chiari Not Causing Most Symptoms

I wanted to share with the group and update, which is a cautionary tale. After months of sciatic like pain and then pain and tingling in my hands and feet (neuropathy), I received a diagnosis of Chiari in October. Only the Chiari Institute in Great Neck NY recommended surgery - two other well known NSs in Manhattan said no, so I held off. I was put on Lyrica for the nerve pain, but sensory loss and balance issues increased. I went back to the Rheumatologist I had seen at the beginning of the journey and asked her to take another look because I wasn’t convinced the Chiari was causing the problems (I have scoliosis and migraines, but the real issues were the pain down my leg and the neuropathy). My Rheumy took an MRI of my pelvic area and found - definitively - that I have spondyloarthritis, which better explains most of my symptoms.

The moral of the story for me is that there are potentially many, many people who have Chiari that are asymptomatic. If you have Chiari, it may not be the explanation for all of your ailments, and I would encourage anyone with borderline cases (I had a 6mm malformation, but the flow study was close to normal) to keep looking and be your own advocate. Listen to your gut and keep searching if what the doctor is telling you doesn’t seem right.

I’m now taking Enbrel for the spondyloarthritis, and am starting to feel better. Finally.

I’m happy to discuss with anyone. Just message me.

Thanks for posting, dazy -- I'm sure this information will help someone.