Casey Hambleton has a rare disorder called cerebral venous sinus thrombosis (CVST), which is when a blood clot forms in the brain’s venous sinuses. It took Casey months of doctor appointments, referrals, and advocating for her own health to finally get the diagnosis that likely saved her life.
Casey’s story began in October 2018 just days after a sinus surgery. She began to experience nausea, dizziness, and extreme fatigue. She describes the pressure in her ears as “feeling like my brain was on a carousel outside of my body.”
Once her vision became blurry, Casey knew it was time to seek medical attention. She called the surgeon who completed her recent sinus surgery, but they attributed her symptoms as normal to her healing process.
As her symptoms progressed, Casey visited the emergency room twice over the next few weeks, each time being told she was “just anxious” and had vertigo.
“My brain was fighting to keep me alive, but doctors would pat me on the leg and say it was an anxiety attack,” Casey shared. “I even had one doctor go as far as to ask my husband if I was always so dramatic.”
Casey knew that something was wrong, and she continued to fight to advocate for her health. She visited several different specialists and had several diagnostic scans over the coming weeks, but the results were never conclusive.
Casey finally visited a neurologist who conducted an additional diagnostic scan and discovered she has CVST, which is a rare but serious disorder that can keep blood from draining out of the brain. She was immediately hospitalized and put on an anticoagulant.
Casey’s treatment is ongoing and she continues to have regular appointments with specialists to determine her best plan of care. She continues to take anticoagulants and other medications to help with her vision loss and dizziness.
“I was completely unfamiliar with blood clots and thrombosis,” Casey said. “I thought it was something only older people could get.”
Casey admits that the most difficult part of her diagnosis has been the daily struggle and constant fatigue, especially since she is a mother to a young daughter.
“I missed out on six months of my 4-year-old daughter’s life,” she said. “I could barely do anything with her other than being in bed and putting movies on for her. My husband has really had to pick up so much of the slack.”
Despite its challenges, Casey is determined to move forward positively while living with CVST. She says that each time she visits a new doctor, she educates them about CVST so that they can better understand the rare condition.
Casey also wants to remind others that they are their own health advocates and that they are not alone.
“My brain no longer functions like it used to. CVST is basically a traumatic brain injury and you have to adapt your life completely,” she said. “It can happen to anyone and you have to advocate for yourself.”