Many Doctors Aren’t Familiar with CVST: Abigail’s Story

Many Doctors Aren’t Familiar with CVST: Abigail’s Story

I woke up one morning with the worst headache of my life. I immediately thought it was a migraine because my mom suffers from them. I had also been sick for weeks before, so I thought it could have been from that. So I popped a couple of ibuprofen and went to work.

It never got better. In fact, it got worse. Over the next week, I visited the ER three times. During the first visit, they did a CT scan and it came back clean and sent me home on ibuprofen and acetaminophen.

The second visit was at a different hospital and they said it was probably from whatever illness I had the previous weeks and it would go away eventually.

Three days later, my head hurt so badly that I couldn’t sleep, so I went back to the ER. After hearing I had been sick, they suggested a lumbar puncture to check for meningitis. I said no and demanded an MRI, but they refused because of insurance. I told them I felt like something was wrong and this was not just a normal severe headache. My mom and dad got frustrated and told them to do the MRI and we’ll worry about costs later. They finally agreed.

After two scans, suddenly I had a whole team of people telling me I had CVST, a severe blood clot in the brain. They said that this condition is rare, especially in someone my age (29). Of course, I was terrified. They said the clot was caught before a stroke could happen, thank the good Lord!

I am now on apixaban to help my body dissolve the clot over time. Doctors don’t know exactly how it started, but suspect my oral contraceptive was at least part of it. My neurologist had a CT angiogram done and it finally showed the extent of the clot and said since I was sick for so long that a sinus infection could have contributed to it as well. I am getting re-scanned in three months and doctors are hopeful that things will improve by then.

I’ve dealt with anxiety and fear since leaving the hospital, but I try to stay positive. It has made me realize I shouldn’t ignore anything my body does.

I’ve learned that many doctors and medical professionals aren’t familiar with CVST. I’ve also learned that insurance seems to dictate someone’s care, and that needs to be changed.

My advice to others is to not be afraid to speak up for yourself! You know your body best, so if you think something is wrong, sometimes you have to be an advocate for yourself.


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