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Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)
Stroke & Cerebrovascular Diseases | Last Active: Oct 16 11:56am | Replies (91)Comment receiving replies
Hi Everyone,
In November 2018, I was diagnosed with CVST after visiting urgent care and than my doctor over the span of 7 days. The initial diagnoses was probably a “sinus infection” but when I started crying in the office she sent me for a CT scan.
I got a call the same day that I needed to go to the hospital to have an MRI bc I had a possible thrombosis. I remember being hysterical and scared but somewhat relieved they found the reason for my severe headaches, blurry vision and vomiting.
Just had my follow-up MRV and the doctor said it’s great news because they vein has partially opened allowing blood to flow and I’ll be off blood thinners in 2 months.
I feel very fortunate because my vision came back to normal and the headaches aren’t every day. I’m trying to get used to my “new normal” and navigate the anxiety of having this happen again.
Hoping to hear some other stories and if what we went through has a low risk of happening again.
BTW...the cause was determined to be from oral contraceptives after all blood tests came back normal.
Replies to "Hi Everyone, In November 2018, I was diagnosed with CVST after visiting urgent care and than..."
Hello I was diagnosed with CVST last week and was curious if you were placed on plavix or heparin? Thank you.
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Hi all, I'm a very healthy, active 65 yr old, Rarely went to Doctors, no need , yet I was diagnosed with CVST in April of this year, even though the excruciating headaches and earaches started back in August. I went from Doctor to Neurologist to physio therapist, massage therapist, etc.. anything to try and determine the cause of these daily, horribly painful, headaches. I finally succumbed and went to emergency, had a CT scan, they said everything was good and prescribed Tylenol. Then suddenly, 7 months later the headaches stopped and this whooshing sound started in my left ear, went to an ear doctor, he couldn't find anything wrong, but said he would like another scan done. On top of this, my eyes were not doing well, my vision was off, things were not good. Went to the opthamologist who finally found a bit of papilledema and said I needed an MRI. Off I went to emergency, where they wouldn't do a MRI but to appease me they did another scan. Lo and behold, the Doctor came back with the CVST diagnosis and admitted me immediately. FYI, after I mentioned I had gotten a scan back in August, they reviewed that scan and I was told that there was a little something there at that point. They missed it, I was livid!! So I'm now on blood thinners, 4.5 months and now my last CT scan showed a possible Styloidegenic jugular vein compression, which could possibly be the root of my CVST. Been trying to see a neuro surgeon for the past 4 months, had to go back to emergency re my eyes where the Doctor on call was kind enough to refer me to a neuro opthamologist who discovered papilledema in both optic nerves. Needless to say, I'm frustrated, upset, scared that I'm going to lose my vision. The whooshing in my ears is getting worse. I'm trying to be pro active with my health and hitting brick walls every step of the way. All I ever hear is the referrals have gone in and we're waiting . I just want some answers so I can move forward...