I Started Losing My Vision: Lydia’s Story

I Started Losing My Vision: Lydia’s Story

June 2021 was the month my life was flipped upside down. I started experiencing intense pressure in my head and a sharp pain in my neck and shoulder that radiated down my arm.   

I visited my primary care doctor and an urgent care center, where I was prescribed muscle relaxers, a steroid, and was set up to start physical therapy for what they thought was a pinched nerve. Nothing seemed to help. As each day went on, the headaches and pressure got progressively worse to the point I was unable to sleep for more than 45 minutes at a time.  

A few days later, I started experiencing double vision. My primary doctor advised me to go to the ER. There, they ordered a CT scan of my head and neck, which looked fine. I was sent home with no answers and instructions to follow up with my primary doctor if my double vision did not subside.   

My primary then referred me to an ophthalmologist because I was completely losing my vision in my left eye, and could not tolerate any light. The ophthalmologist immediately saw that my optic nerves were severely swollen. He did not let me leave the office until my primary doctor was aware of what was going on.   

I saw a neurologist the next day and got an MRI. The results were normal, so I still had no answers. My neurologist was determined to get to the bottom of this. He ordered another type of MRI, a magnetic resonance venography (MRV), and told me that if I got any worse, I should immediately go to the hospital. Later that day, I went to the hospital.   

I spent three days in the ICU and four days on the neuro floor. I was diagnosed with cerebral venous sinus thrombosis (CVST) located in my superior sagittal sinus, right transverse, and sigmoid sinus. I also discovered I have factor II clotting disorder. That and hormonal birth control most likely contributed to my clots.  

I was 22 at the time, and it was challenging to accept that the vision loss and that I had to be on blood thinners for a while, if not my whole life.   

This experience has taught me to never take anything for granted because life can change at any moment. Also, listen to your body. You know your body best, and always keep advocating for yourself, no matter how many doctors it takes! 


Factor II Clotting Disorder
Blood Clots and Birth Control
Questions to Ask Your Doctor 

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