Yesterday’s appointment went well. The neurosurgeon reviewed all my MRIs, starting from my initial ER visit when Chiari was first seen on a scan. Going through every image, discussing the symptoms tied to each one, and filling in more of the timeline was both emotionally and physically draining.
She focused on the syringomyelia (syrinx) in my neck. When CSF flow is blocked, fluid can collect in the spinal cord and form a pocket, similar to a cyst. The surgeries I’ve already had were meant to shrink or resolve it, but we don’t have current images of my neck to see if that’s happened.
One theory is that the remaining syrinx could still be contributing to my symptoms. She sent me downstairs for flexion X-rays of my neck to check the hardware and confirm proper alignment.
Her plan is to gather as much testing as possible to start ruling things out.
• A follow-up with her after the upright MRIs in October.
• Discussing an angiogram with an interventional radiologist to look at the blood vessels in my brain and check for narrowing. Insufficient blood flow to my brain could be contributing to the fainting, blurry vision, fatigue, and other symptoms. If there is narrowing found, a stent could be placed.
• Another spinal tap to measure the pressure in my spine if my symptoms worsen in the meantime.
She was very honest that she’s still gathering information and that my case is complex. She has treated patients with Chiari Malformation and others with hEDS, but not both in the same person. She explained that Chiari is covered in surgical training, while she learned about EDS and hEDS later in the medical training and the two conditions are rarely discussed together.
I also learned that the standards for Chiari decompression surgery have changed quite a bit since my first operation. If this had been my initial surgery and she were performing it, she would not have cut the dura (the thick lining around our brains). The big debate about whether to open the dura has shifted; many surgeons now score and stretch it instead. That approach reduces the risk of scarring and adhesions inside the dura. Scarring outside the dura is still possible, but the overall risk is lower. They also try to be more conservative with C1 removal and stabilize the area immediately when needed. It’s striking how much the surgical approach to Chiari has evolved in the last six years.
The appointment was an hour long and she had all my MRIs pulled up and wanted me to explain the symptoms and circumstances around each one and provide more information for her timeline. She is organizing the information as clearly as she can and will likely refer me to another surgeon if another surgery is needed.
Thank you everyone for praying and the support. It was a difficult appointment. I wasn’t sure what to expect and didn’t set my hopes high. It was hard having to sit and relive all the scans, symptoms, and appointments of these last 6 years. I still don’t have a clear explanation on why I’m still struggling with symptoms, but I’m feel hopeful now that there’s a plan and surgeon that will start testing and eliminating possibilities until we have a better idea.
Thank you,
Shae
