Welcome to Chiari Malformation Awareness
Raising Awareness, Inspiring Change, Building Support
Help educate others on Chiari Malformation to make a difference!
Check out my chiarivoice instagram page:
Questions I've Been Asked:
"What is Chiari Malformation?"
Check out my blog page and read about it!
"What are the treatment options for Chiari Malformation?"
Monitoring, Medication, and Surgery. If you're asymptomatic, it might be recommended by your healthcare provider to have regular checkups and MRI scans. If you experience pain, your healthcare provider might prescribe pain medications. If you're symptomatic, there's the option of posterior fossa decompression surgery. This surgery is performed differently depending on what type of Chiari is being operated on.
"What are the symptoms of Chiari Malformation?"
Check out my blog page to learn about the symptoms associated with Chiari types 1-4!
"How were you diagnosed with Chiari Malformation?"
Summer of 2023, I was at a mini golf course with my friend when we were fooling around and making a TikTok. The golf club swung out of his hand and broke my nose so then the doctors ordered a CT scan to rule out a concussion. They then came into the room and told me that I have Chiari Malformation. I had no idea what it was and was terrified, luckily my family was there to support me.
"What's the cause of Chiari Malformation?"
No one is quite sure about the exact cause of Chiari Malformation but it's typically due to problems that happen during fetal development. Congenital Chiari Malformation is when the skull isn't large enough for the brain compared to Acquired Chiari malformation when spinal fluid leaks from the spine which can be caused by an injury, infection or harmful substance.
"Why did you decide to do the surgery so young?"
When I saw my first neurologist for the first time, there was no urgency for the surgery but at my third visit with him, he recommended that I eventually get the surgery. My parents and I took time and decided to get a second opinion, when I met with my current neurologist I was deciding between my winter break compared to my spring break for the surgical date. I decided I wanted to get the surgery done sooner than later so I could return to training with my rugby team and relieve my symptoms as soon as possible.
"How has recover been since your surgery?"
I got my surgery December 16 2024, and it's been a month post op. I'm very grateful for my team of doctors at Weill Cornell Medicine in NYC, right after my surgery I was very lethargic but after the anesthesia wore off, they urged me to get moving which was one of the best things for me looking back. I was discharged from the hospital two days post op and have been recovering slowly since 5 days post op. It's been great getting back into the gym, going on walks and being able to work again.
Chiari Malformation Month
September 20th & 25th 2025 - Annual Conquer Chiari Walk
