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

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@moondusk

Hello, I was diagnosed with a CVST in December, 2020 at the age of 69 years. The CVST partially occluded the left transverse and left sigmoid sinus. The CVST was found after a CAT scan was done on my head/brain due to long standing issues with internal vibrations. I was prescribed Eliquis. About a month later, I started having increasing discomfort from headaches. Another CAT scan indicated a Dural Arteriovenous Fistula. It was confirmed by an MRV and MRA. They also discovered there was retrograde venous drainage. I had angiogram procedure to help determine a treatment approach. Two days later I had another angiogram during which time I had an embolization with Onyx. The doctors explained that the fistula was a mess. They prepared me for a six hour procedure followed by intensive care. Then another six hour surgery at some point and another intensive care stay. My neurosurgeons, Dr. Ray and Dr. Stevens at University Hospital in Cleveland, Ohio and the rest of my treatment team were amazing! The procedure took two hours and there was no intensive care. I was on the road to recovery over the past year and looking forward to getting off Eliquis. However, I again began having headaches and numbness on the left side of my face and neck discomfort. Three weeks ago, I had another MRV that showed that the clot was now occluding the Sigmoid and Transverse Sinus and also my internal Jugular Vein. I have an appointment with my vascular neurologist next week to discuss further treatment options. Waiting is difficult! I continue to have increasing symptoms. I am so glad, I found this group!

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Replies to "Hello, I was diagnosed with a CVST in December, 2020 at the age of 69 years...."

Hi !
Sorry to hear about this. Did you develop an extended clot in the jugular vein despite treatment with Eliquis? Thank you in anticipation for your answer.

Cristina ( CVST diag in March 2023)