Heather Day
Keymaster
Post count: 9

My sister gave me permission to share that she has been diagnosed with CSVT, affecting both sides of her brain. She had 2 doses of Pfizer BioNTech vaccine in March and April of 2021. Her first hospital visit was early May and was diagnosed with Myositis in her shoulder on the side of injection. She says it’s still getting bigger and denotes auto-immune disease. She also had swollen glands in her neck on the same side. Did it go from her left arm, to left shoulder, to left neck, to brain?

Her doctor has her on a clot dissolving treatment now. I found another incidence of a man with CSVT which resolved in 22 days. I am praying that my sister’s will resolve as well.

She was having these symptoms for a long time but when she went on an airplane, her symptoms increased and she started having a headache, she said felt like her “head was going to explode” also seizures shown on EEG. Went to hospital another time but they did NOT take her d-dimer (that I suggested to the neurologist when I took her, and he had ordered before she arrived, and they were supposed to do all that he ordered while she was there) until AFTER they gave her a clot dissolving shot. The nurse would not answer her when she asked why they didn’t get D-dimer with bloodwork but responded with “this shot could save your life.”

I’m glad she got the shot because her headache was much better after that. But they gave her the D-dimer after the clot dissolving shot and told her that her results were normal. They also did not do the brain MRI that was ordered. She just got her MRI and I will see if I can test the limits of this forum I have made and upload the images via the docs settings. I have also published a blog post that you can see by searching “CSVT brain images” on the blog.