My name is Gracie and I am 16 years old. I was diagnosed with Chiari Malformation 1 in December of 2024. My symptoms started in the summer of 2024. It started with unexplained weight loss. My watch was also starting to pick up that my heart rate was dropping into a low range. 

After a few basketball trainings, my trainer suggested getting checked because running out of breath became an issue. I couldn’t run long before without running out of breath. I was also experiencing some issues when trying to shoot the ball. 

I was finally able to get into my primary doctor in September of 2024. They were concerned with my heart rate but also ended up ruling out anything because I was “an athlete”, even though I had not been able to do a full workout in months due to having knee surgery earlier that year. I was beginning to fall at school and throwing up without warning during basketball practices.

 I ended up in one ER because I was having dizzy spells. They still ruled out anything serious after blood work was done. 

After a lot of phone calls, I then ended up in a different ER to be checked. At this point my dizzy spells were becoming so severe that I was falling and blacking out. After having just about every system checked I was admitted for overnight observation. They were concerned with my weight loss, even considering it to be an eating disorder which I knew I did not have. 

They did a CT scan of my head to check my pituitary gland for a hormone disorder. That came back fine, but that is where it was found “that I could have” Chiari Malformation.  I was sent home with a heart monitor for two weeks and instructed to keep a food diary and was told to wait for an MRI of my head. The on-call doctor was not concerned with Chiari, because I could walk and still play ball when I wanted. 

All of the heart stuff came back fine, even while still having a low heart rate. I was sent to Kansas City for an endoscopy and colonoscopy because of the throwing up and feeling like I could not fully swallow. Both of those came back fine.

 I was already scheduled for the MRI and follow up with the neurosurgeon. The middle of December was my appointment with the neurosurgeon. 

At the time of the MRI, my case was still mild, but on the scale of being diagnosed. We were given the option to go to a neurologist for a second opinion and pain management options. At this point my symptoms were unmanageable, but we waited for that appointment. 

The neurologist appointment just confirmed that maybe we needed to move forward with surgery. We could have gone to other places for opinions, but my parents decided that we were just delaying what needed to be done.  

I had surgery on January 27, 2025. I had a part of the back of my skull removed, C1 Laminectomy and Dura Patch to help hold everything together. 

My surgeon said that things were much tighter in there than he initially thought. So, surgery for me was the only option to have a chance at a better life. 

I am now over a year post op and only have mild symptoms compared to before, and even those are rare.  I have recently passed my drivers test and living my life the way a 16 year old should be. I stay busy with a youth group that I joined and have made many close friends through.  

 I am also involved in my school's NHS chapter,  FFA, Student Council Rep, YEPO and Educators Rising clubs.  

I am so grateful for the decompression surgery that has changed my life.