← Return to Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

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@lisalucier

Hi, @gtownsend - nice to meet you, and I'd like to add my welcome to Mayo Clinic Connect. Has your doctor talked with you about what is next in your cerebral venous sinus thrombosis (CVST) treatment?

@dphillips3108 - how is your daughter doing? Is she still in the hospital?

@segalit - do you have a diagnosis of cerebral venous sinus thrombosis (CVST)? How are things going with taking a break from working and from college?

@runnelht - how are you adapting to the vision change due to the CVST and the swelling pushing on your optic nerve you talked about?

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Replies to "Hi, @gtownsend - nice to meet you, and I'd like to add my welcome to Mayo..."

My daughter was diagnosed with cerebral venous sinus thrombosis and was treated with Heparin drip and antibiotics. Infectious disease with the hospital recommended to stop the antibiotic because there was not sign of infection. The hospital continued the heparin dip for six days and set up my daughter to continue the blood thinner at home. She was released from the hospital but not getting better. Her vision went from 20/400 to 20/1000 by the time she left the hospital. The next day, we traveled to another doctor, who specializes in thrombosis to receive a second opinion. He examined my daughter and recommended hospitalization where a team of doctors could review her case. After many test, the radiology team told use did not see signs of a thrombosis, but said she has Tolosa-Hunt Syndrome and needs to be on corticosteroids. Her vision has returned to 20/250 however, test show there is optic nerve damage. Eye movement has returned and vision as improved. Her face is still numb and very swollen. She did return back to college and will graduate with honors.