Thank you for sharing your story, Grace. It is one that many of us live through — including my kids and I! One critical point for many of us (and the main reason I released The Driscoll Theory) is that high intracranial pressure (usually without papilledema) can mimic craniocervical instability, yet can often be reversed with medication to control the pressure. My son and I were told to have neck fusions (and brain shunts, and to consider Chiari surgery), but all we needed was an inexpensive medication (Diamox) and the debilitating symptoms were gone the next day! Like many others, this high intracranial pressure can be temporary, and permanent surgeries were not only unnecessary, but they could have caused us many problems down the road. I don’t know if this is an option for you, and there are some “tricks” to it (like monitoring CO2 levels to keep it working), but it is worth working hard to get this right. The upside for many of us is life-changing when we get to the bottom of this correctly. This journey with EDS can be a tough one — hang in, my friend. You’re doing great! 😉