Cerebral venous sinus thrombosis (cvst)

@mvoss8626 - can you share what doctors you felt were helpful at Mayo Rochester for the CVST diagnosis? Because this is so rare I want to find a doctor that knows how best to help me. I am in MN and was diagnosed in Dec 2020 with CVST. Appreciate any help you can give.

Hello @awa and welcome to Mayo Clinic Connect. I understand you were diagnosed with CVST last year. Thank you for sharing your story and I can only imagine that you are concerned about more clots in the future.

Are you still on blood thinners? How is your general health now that your clots have dissolved?

Hello everyone, I'm a young 25 y/o female and I was diagnosed with CVST in September last year. I had severe headache and vomiting. I had dehydration. Went to ER for dehydration on Sunday. Mentioned about my headaches also, they ignored it saying could be any common cold. Came back, same state. Headache, nausea, vomiting for 3 days, until my body have up and I had a seizure attack on early Thursday morning. I never had that before. That's when my bf called up 911 and they took me to hospital where they did CT scan and found CVST. Confirmed it by MRI and MRA. I was on blood thinners for 4 months and now my clot have dissolved. I still worry that they might come back. Because it was very scary experience at this young age.
The reason given for it was: birth control , dehydration, I had taken a flight 2 weeks prior to the onset of headaches so doc said that could also contribute.

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!

Where to begin, I guess the beginning. Right? Woke up on a Friday with a headache that while laying down would disappear. Headach so bad while standing or sitting I would feel as though I would throw up. So basically stuck in a horizontal position. Went to ER on the following Tuesday and got a told it's a migraine and was released. Went back a few days later due to headaches worsening. In the ER (same one as before) they started talking to me about Spontaneous Spinal Fluid leakage. So they admitted me. Did I say this was at the beginning of the Pandemic? Well it was. No visitors. Next day after all the CTs and MRIs they said there's a leak. So we did a blood patch. It seamed to work so I was released a few days after. That was on a Tuesday by Friday I was back admitted again due to headaches coming back. This time did a Myelogram and they now discovered I have 5 leaks. So another blood patch. This time no relief, actually worsened everything. Started to not be able to move eyes couldn't take any light. Headaches so bad that dark thoughts were seeming as a relief. No pain meds helped and all I could do was throw up. Since Pandemic was in full swing i couldn't have visitors. My phone's screen was too bright so my wife would call the nurse to get me to look at texts. Shes been following my situation and posting updates on FB. Luckily a friend of the family was saying I need to go somewhere else. So I asked to be discharged basically demanded it. I was in that hospital a total of 7 days combined. At my discharge I was basically blind except for blurry images, I couldn't control my bodily functions so I was completely covered in vomit, piss and shit. My wife took me home so she could help me shower then took me to another hospital. Within 24hrs they located the clot in my brain. Instantly started bloodthinners and diamox. Within 2 days I was a totally different person. Come to find out. The 2nd hospital got all med docs from previous hospital and told me there was 0 signs of spinal fluid leakage. I had meningitis that led to the clot. If my Wife wouldn't have posted things on FB and not been alarmed who knows what wouldve happened. Since then I still have headaches but they seem to be part of my life. I still am taking blood thinners (Eliquis) and Amitriptyline for headaches. Seams to be getting better just trying to stay positive. Sorry so long winded.

Hi! Thank you. I will definitely look into the Brain and Nervous System Group. I tend to get symptoms dispersed throughout the winter season. It is definitely less severe than it was 2 years ago, however.

@cmdisc819 Welcome to Mayo Clinic Connect. You have been having, what you believe to be neurological symptomology but so far testing "looked fine." You are looking to connect with members that may have had similar experiences. I'm wondering if it would be best for you to join conversation in the Brain and Nervous System group that I have linked below. There are many members that may have insight into your symptomology.

- Brain & Nervous System https://connect.mayoclinic.org/group/brain-and-nerve-diseases/

May I ask how often you have these type of symptoms?

Hi everyone! I’m not diagnosed with CVT but have been dealing with neurological issues for several years. About 3 years half of my face started tingling and I had severe head pressure and pain, nausea, uneven pupils, twitching, etc. I was sent home from the ER after they gave me IV fluids and basically told me I was being dramatic. Last year the same thing happened and I finally saw several doctors. I had an MRI with and without contrast but all I heard back was it looked fine. Today I finished a workout and realized my vision was off and had a headache. I looked in the mirror to see my pupils drastically different sizes (+ just overall very dizzy). I’m also on birth control and today is the second day of the month.
I find it hard to believe it would be anything like CVT considering it’s been so long and the MRIs (that I know of) didn’t show anything out of the ordinary. does anyone have experiences like this or with MRIs not revealing the issues?

Hi @makingfriends, you'll notice that I removed your personal email from your message above. Because Mayo Clinic Connect is a public forum, we recommend not sharing personal contact or identifying information.

Megan, Thank you for your willingness to share your experience with Cerebral Venous Sinus Thrombosis (CVST) with other members. It must've been frightening for your young daughter to witness your episode. Have you been able to talk to her about it?

Hi all,
I just wanted to post an update - it’s been 9 weeks since I was diagnosed with a CVST and I am symptoms free (only recently) and doing fine. If anybody past or future wants reach out and share your story with me, I’d love to connect. Best wishes my friends, stay strong