Occipital Neuralgia – filling a void
State: New Jersey
Congressional District: NJ04
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Issues and Challenges
Kayla Smock has encountered: Access to Expert Providers, Rare / Underserved Disease, Underserved Community
My name is Kayla and I am 18 years old. Up until 2015, my life was like any other 13-year-old's, but unfortunately that all changed in a softball game. My teammate and I collided and I was left with a concussion, neck sprain, and whiplash. Doctors told me I’d be back on the field in no time. However, my headaches weren’t going away.
It wasn’t until two years after my initial injury that I was diagnosed with Occipital Neuralgia (ON). ON is a condition, usually caused by a whiplash injury, where the occipital nerves that lie in the back of your head become inflamed and compressed. Some symptoms include constant head and neck pain, eye strain, zaps through your head, fatigue, pain radiating down the arms, etc.
I had occipital nerve decompression surgery in 2019 which helped some, but not enough. I still had constant head and neck pain. I ended up getting a neuro stimulator implant in May, which has helped manage my pain. There are 4 wires in my head that connect to a battery in my chest. The wires carry frequencies throughout my head and the idea is to interrupt the pain signals from reaching my brain. It has definitely helped me, but I remain in constant pain.
In these last five years, I have been to 35 specialists in 6 different states. I live in New Jersey, so have been to all of the top hospitals and have seen the top neurologists. What baffles me is that it took me 2 years to get diagnosed with ON. And the doctor that diagnosed me was a local sports medicine doctor that I was seeing for my neck pain. Up until that point, doctors told me I was just an anxious teenager. They made me question whether my pain was real or if I was going crazy. No one should ever be treated that way.
The hardest part about having ON, besides the constant pain, is that it is invisible. No one could see that I was hurting. When I couldn't play my sport anymore, people would think I was faking my injury and prolonging it. Little did they know, I was barely able to make it through a school day. I think it became more apparent when I had to begin home instruction. People finally started taking it seriously. But even then, no one truly understood. And I can't blame them - no one understands the battle of chronic pain until they've had to endure it themselves.
My Motivation and Inspiration
Now that I have my diagnosis, I am fighting for other Occipital Neuralgia warriors. I created the "Occipital Neuralgia Foundation." The organization has become my pride and joy, it keeps me going. We have a positive community for people to talk about their journey's and what has helped and what hasn't. Our mission is to bring support to people suffering, to educate the public, and to foster research into the causes and treatments of Occipital Neuralgia (ON). We have successfully fulfilled the first two parts of our mission, largely through our social media. I am in the process of speaking to doctors to discuss how we can promote research, perhaps through more clinical trials. All in all, my injury has shaped me into the person I am today. And while it can be hard to look at the positives, I am grateful to have had the opportunity to meet so many amazing people through this journey.
Thank you Patients Rising for giving me the chance to share my story. I am blessed to have found your organization.