Cerebral venous sinus thrombosis (cvst)

Hi to all...i experienced my cvst almost 9 months ago now. It happened the end of June 2018.it started with a thunderclap migraine and a hematologist I was referred to determined it was caused by a protein s deficiency. Had a massive bleed from what doctors said. Just curious as to everyone's current condition. Currently I find myself to be really wimpy for lack of a better way to phrase it and I think it might be because of the blood thinner but not sure.

Hi to all...i experienced my cvst almost 9 months ago now. It happened the end of June 2018.it started with a thunderclap migraine and a hematologist I was referred to determined it was caused by a protein s deficiency. Had a massive bleed from what doctors said. Just curious as to everyone's current condition. Currently I find myself to be really wimpy for lack of a better way to phrase it and I think it might be because of the blood thinner but not sure.

@mvoss8626,

I'm so glad you found answers and have a plan of care. Despite your complex diagnosis you seem to remain upbeat. Is this true?

It sounds like being told you had functional neurological disorder was also a new diagnosis. You may be interested in joining this discussion in the Brain & Nervous System group:

"Functional Neurological Disorder" at https://connect.mayoclinic.org/discussion/functional-neurological-disorder/

Are you not able to fly because the clot might get worst?

I am 29 yr old female diagnosed with CVST 6 months ago. Along with CVST I also had dual diagnosis of a blood clot in the lung (PE) and a blood clot in left leg (DVT). I‘ve been hospitalized 6 times at 2 different top hospitals in Dallas. None of them can figure out what’s the underlying cause. I have taken every single test there is. I see a hematologist, neurologist, rheumatologist, cardiologist, pulmonologist, ophthalmologist, internal medicine, OT and PT, and therapist regularly- monthly and weekly. My life consists of doctors appointments. I am on disability. A year ago my life was as close to normal as it could get- some minor auto-immune issues. In January of 2019, I began experiencing significant memory loss...forgetting names, memories, places, things. This continued, I began scaring myself so I told my family. They laughed it off. I knew in my heart something was wrong. People told me it was my anxiety. In August, I decided to go to the neurologist...I also began to experience changes in vision. Blinding light, terribly loud sound, hard time focusing. For about two years prior I had these headaches that lapped around my head that were there the moment I woke up- they would last all day and the pressure felt like my head was going to explode. I told all of this to the neurologist...it was so nice for someone to finally take me seriously. He ordered a CT scan. I got a call at 9pm on Saturday a couple days later...it was my neurologist. I knew something wasn’t right. He told me the radiologist just called him and I need to get to the hospital right away. The CT scan shows there is a blood clot on the left side of my brain. The ambulance came they took me straight to the MRI. At this time- I had also been experiencing other symptoms...shortness of breath, coughing up blood, muscle cramps, spasms- so they did further imaging and I was in the ER. Doctors ran an MRA & MRV then came in the room and said were admitting you. You have a chronic CVST it’s been there for a while (but I met none of the criteria for typically how it gets there.) You also have a DVT & PE. I’m still recovering from that and that was early September. I am on Eliquis now. The DVT & PE are gone...CVST, remains untouched in size- in fact has grown a little bit, but was told that could be due to the imaging angle. Although, I’ve had 3 separate MRV’s done in November all confirming the growth. It’s been 6 months. My life has been hell due to this thing. I have learned to adapt from the CVST affecting my...memory- short term and long term, vision, sensitivity and hearing, tremors in my hands, headaches, neck and back pain, balance, pressure in my head, confusion, inability to concentrate, coordination, and sooooo much more! Not to mention the anxiety I face DAILY...because there is a blood clot in my brain and wondering what’s next. Guys, WE will get through THIS!!! We CAN get through this! My neurologist just referred me to Mayo Clinic in Minnesota...I am not allowed to fly, so have to make a 14 hr drive- stopping every 2 hours. I think this the silver lining though and I will hopefully get the answers I’ve been praying for. He said the next step for me is putting a stent. I hope this helps someone. Love and prayers to you all.

How are you doing now? Was Styloidegenic jugular vein compression confirmed?

I am 29 yr old female diagnosed with CVST 6 months ago. Along with CVST I also had dual diagnosis of a blood clot in the lung (PE) and a blood clot in left leg (DVT). I‘ve been hospitalized 6 times at 2 different top hospitals in Dallas. None of them can figure out what’s the underlying cause. I have taken every single test there is. I see a hematologist, neurologist, rheumatologist, cardiologist, pulmonologist, ophthalmologist, internal medicine, OT and PT, and therapist regularly- monthly and weekly. My life consists of doctors appointments. I am on disability. A year ago my life was as close to normal as it could get- some minor auto-immune issues. In January of 2019, I began experiencing significant memory loss...forgetting names, memories, places, things. This continued, I began scaring myself so I told my family. They laughed it off. I knew in my heart something was wrong. People told me it was my anxiety. In August, I decided to go to the neurologist...I also began to experience changes in vision. Blinding light, terribly loud sound, hard time focusing. For about two years prior I had these headaches that lapped around my head that were there the moment I woke up- they would last all day and the pressure felt like my head was going to explode. I told all of this to the neurologist...it was so nice for someone to finally take me seriously. He ordered a CT scan. I got a call at 9pm on Saturday a couple days later...it was my neurologist. I knew something wasn’t right. He told me the radiologist just called him and I need to get to the hospital right away. The CT scan shows there is a blood clot on the left side of my brain. The ambulance came they took me straight to the MRI. At this time- I had also been experiencing other symptoms...shortness of breath, coughing up blood, muscle cramps, spasms- so they did further imaging and I was in the ER. Doctors ran an MRA & MRV then came in the room and said were admitting you. You have a chronic CVST it’s been there for a while (but I met none of the criteria for typically how it gets there.) You also have a DVT & PE. I’m still recovering from that and that was early September. I am on Eliquis now. The DVT & PE are gone...CVST, remains untouched in size- in fact has grown a little bit, but was told that could be due to the imaging angle. Although, I’ve had 3 separate MRV’s done in November all confirming the growth. It’s been 6 months. My life has been hell due to this thing. I have learned to adapt from the CVST affecting my...memory- short term and long term, vision, sensitivity and hearing, tremors in my hands, headaches, neck and back pain, balance, pressure in my head, confusion, inability to concentrate, coordination, and sooooo much more! Not to mention the anxiety I face DAILY...because there is a blood clot in my brain and wondering what’s next. Guys, WE will get through THIS!!! We CAN get through this! My neurologist just referred me to Mayo Clinic in Minnesota...I am not allowed to fly, so have to make a 14 hr drive- stopping every 2 hours. I think this the silver lining though and I will hopefully get the answers I’ve been praying for. He said the next step for me is putting a stent. I hope this helps someone. Love and prayers to you all.