I had surgery 12 years ago for 13 mm tonsils from my Chiari…or what I thought was Chiari. I got two years of relief. Since that surgery, my balance went to hell, my headaches returned (brought under control with Lyrica) and I then had two gamma knife brain surgeries for trigeminal neuralgia. My balance has always been hinky post Chiari surgery, but two years ago my balance got so bad I could hardly stay upright, I was having trouble swallowing (scary!), slept all the time, had poor concentration and had ice on the back of my neck constantly. I have had numerous MRIs and all have shown, even immediately post-op, slumping of my cerebellum.
I was finally suspected of having a CSF leak, and after 3 blood patches that did not work for more than 3 days, I went to Duke, which is one of a handful of facilities that have a CT scanner with fluoroscopy that could pinpoint where my leak was. They tried using fibrin glue in the blood patch twice to try and plug the leak. It turns out I had a fistula, a bad hyperdense vein that was being told by my spinal nerve to drain my spinal column.
I had a brief 1.5 hour surgery to cut the spinal nerve and get rid of the bad vein. That was last October. For the first time in 13 years I have had a normal MRI. Suspicions are that I NEVER had Chiari, it was all a result of my leak and a “dry” brain…ditto for the headaches, imbalance, swallowing issues and trigeminal neuralgia…I now am part of a research study, so I hope my story can help others investigate different possibilities for Chiari type symptoms.
Good luck to you!