"I was told I was the worst case of Chiari Malformation he had ever seen in his career" - Bryanna's story battling a multitude of illnesses at a young age.

Hi, my name is Bryanna Ramsey, and this is my story.

At the age of 5, I started having horrible headaches, body pain, balance issues, and many other symptoms. My mom started taking me to doctors constantly, and we were always told, “She’s just trying to skip school. She’s fine.”

At 11, I started 6th grade and began playing the clarinet. Every time I would play my instrument, I would end up throwing up. I went to the doctor for it and was told I had asthma and to just use an inhaler before I played. I started using the inhaler, but it did not work at all.

In May of 2023, when I was 12, my right eye ended up turning toward my nose. My mom immediately booked an eye doctor appointment. We went to the eye doctor, and she sent us to an eye specialist because she didn’t know what was happening. We went to the eye specialist, and at first he didn’t ask any questions and said he could fix it because I had “been that way since birth.” We then explained to him that this had just happened three weeks ago and that I was not born like this.

He sent me to get a brain MRI because he thought it was a brain tumor. The scans came back a few days later, and we saw that it was Chiari Malformation. We only knew what it was because my mom had been diagnosed with it in October of 2022. We went back to the specialist and basically got told, “Good luck.” My mom and dad started working so hard to find a doctor who could help me. We ended up finding a doctor we heard many good things about, but he was 8 hours away. We called his office and ended up getting an appointment scheduled for September, and we started packing to move.

At my first appointment with my new neurosurgeon, I was told I was the worst case of Chiari Malformation he had ever seen in his career. I was also told that my C1 vertebra was curved into my spinal cord, that it would have to be shaved down, and that I needed to be fused from my skull to C2. On October 3, 2023, I had my Chiari decompression and fusion surgery. Three months after surgery, I had just gotten my neck brace off when all of my symptoms came back. Thankfully, they weren’t as bad as before surgery.

Two years after my surgery, my symptoms started getting ten times worse. I ended up tripping and falling many different times, jarring my neck because of my symptoms coming back. I went to my two-year checkup and was told that I was fine and to go get my eyes checked because they thought it had to do with my eyes. I went to my ophthalmologist and was told my eyes were fine and that it was my brain.

My parents decided I needed a second opinion because my doctors were just pointing fingers at each other. I ended up getting in with one of the top neurosurgeons in the US. He sent me to get scans done before he could officially see me in New York. I got a scan done and was diagnosed with degenerative disc disease. We had an appointment set for January, but due to weather we couldn’t go.

In January, I also had two weeks where I was super shaky and dizzy to the point that my whole body was shaking and I could barely hold a pencil to do schoolwork.

In March of 2026, we finally went to New York. This new doctor asked more questions in 30 minutes than my doctor of three years had ever asked. He ordered more scans while I was in New York: an X-ray to check for scoliosis, a CT scan to check if my fusion had fused, and an MRI to check for a tethered cord.

The following Tuesday after we got home, my doctor called and officially diagnosed me with scoliosis a tethered cord and hypermobility Elhers-Danlos Syndrome also known as hEDS. I have scoliosis in two places: my upper back, which is called flat back, and in my lower back by my hips, causing my left hip to be higher than my right. He also said that my fusion was not fused and that I would more than likely need another fusion. I was put back in a neck brace and told I needed tethered cord surgery as well.

I had the neck brace on for almost a month when we got another call, this time from another surgeon working with my doctor, saying I was fully fused and did not need the brace or another surgery, but that I still needed tethered cord surgery. He also said that he saw a bulging disc starting to form at L5-L6 and that we needed to watch it carefully.

We officially have surgery scheduled for June 8th of this year. At the end of April of this year, I started getting super shaky to the point where my whole body would shake. I’ve had this happen many times before, but this time it just kept getting worse. Three weeks later, and I still have it. They put a heart monitor on me to check for POTS.

Being told I have so many illnesses at such a young age is really challenging.

A message I have for anyone reading this is to take it one step at a time you never know what’s going to happen. And answer any question anyone asks you because the way I see it, the more questions I answer is one more step to more people knowing about chronic illnesses. I hope you know you got this! 

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.