Mayo Clinic Connect
I was diagnosed with a CVST a year and a half ago. I’ve been doing well, but it is always on my mind. It is quite rare and I’m interested in hearing stories from anyone who has been through something similar.
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?
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.
Liked by Lisa Lucier
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.
Wow!! I started this thread back in 2011 – and here we are 9 years later still getting replies. I'm sorry for those who have gone through this recently – but happy to let you know that my health continues to do well. I had my CVST in 2010 and they have never really understood what caused it. I was on birth control, but no other risk factors. I have had no recurrences. I've done a lot of research over the years – happy to keep the conversation going for those who are new to this.
@egee19 @runnelht @segalit @dphillips3108 @gtownsend – wondering how things are going for you (or your family member) with the cerebral venous sinus thrombosis (CVST)? I think that all of the members in this discussion would benefit from your responses.
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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.
Liked by Colleen Young, Connect Director
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…
Hi @hope19 and welcome to Connect. I encourage you to read @brittalisse's posts in this discussion. Things can get better. Being proactive is hard work, but necessary. Keep asking questions and check up on the referrals. Have you considered getting a second opinion elsewhere if you're not getting a response from the health care institution to which the referrals were made? What are the next steps right now?
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.
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