Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

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.

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.

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!

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 @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?

@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.

I am so glad to meet all of you who are dealing with the same thing I have never heard of but now deal with and think about daily, though I try not to! I began 2020 with horrible headaches, accompanied by a flu like illness. I was sure it was migraines, which I have had. The flu got better but the migraines got worse, pounding in my right eye was unbearable and bending over and back up was worse. In June I went for a 10 year breast cancer annual checkup and I mentioned it. My doctor scheduled an MRI immediately. I knew she feared metastasis. A couple of days later I had the MRI and shortly she called and said Good news, no cancer, but you do have a blood clot and must go to hospital right now. They admitted me to the stroke floor, though I had not yet had a stroke, ran lots of tests for 3 days, the neurologist saw me every day and finally gave me the diagnosis of CVST, cause unknown, put me on Pradaxa, and also sent me to their neurologist headache clinic (which has been a God send). In September I had another CT, and the results showed no improvement in the one clot, plus a second clot was discovered. I was sent to a hematologist. At the same time I made an appointment at Mayo in Rochester. My Hematologist here said Pradaxa had failed and he put me on Coumadin and felt like that would take care of things. I saw a wonderful team at Mayo who felt my diagnosis and treatment were on point, so I was feeling very hopeful. Fast forward to January 2021 CT scan, my initial clot has not gotten better, though it is no occlusive, and my second clot has grown, though still no occlusive at this point. My INR numbers are a roller coaster on Coumadin, though I eat and drink the exact same things every day to stay compliant with the diet. I expressed my concern to my headache neurologist and she admitted sometimes the hardest answer to my What’s wrong with me? Question is They just don’t know. So, still handing in. Feeling like my vision is blurry. Fatigued (might be headache meds, might be high doses of Coumadin?). I am going to see my headache doctor at the end of this month and discuss with her....I get to spend much more time with her than my hematologist. Thank you for listening!

This post is an update to my previous post in January 2021. After having been told by my vascular neurologist that my clot had expanded, I waited three weeks to get any further discussion, guidance, or information on the issue. When I had my appointment with the vascular neurologist, I was told that she had consulted with my neurosurgeon and that he stated there was no change in my condition, meaning the clot had not further developed. My current reported symptoms, although important in 2020 when the clot and fistula were discovered, were now not important. The symptoms were attributed to stress. I was told that my neurosurgeon wanted me to have another angiogram as a follow up for the fistula. I was aware at the time of my initial angiogram procedure of needing a follow up a year after my procedure for the fistula. So, it wasn’t a surprise. I was concerned about the symptoms I was having and pushed for more guidance. I was told not to worry as the clot and fistula would not kill me. They would not cause a blood clot to my lungs or heart and result in death. I told her I didn’t want to take my family and friends on an emotional roller coaster with me and appreciated learning that this issue was no longer serious. She then said very firmly, “NO, IT IS VERY SERIOUS.” However, I could not get any further information regarding what was considered serious. Fast forward, I had an angiogram on February 22, 2021. Surprisingly, while I was laying on the table waiting for my angiogram, the Medical Fellow working with my neurosurgeon stated that the purpose of the angiogram was because I had two MRIs recently with one showing that the fistula had redeveloped and there was blood flow through the fistula and the other one showed the fistula had redeveloped and there was no blood flow through it. You can imagine my shock as I had been told there was no change. Suspecting that the fistula had redeveloped is a big change. When my neuorsurgeon came in, he made it clear that they were only doing the procedure to look at the fistula and not my clot. I thought that was an interesting clarification since they are both related/connected. He stated they would not be doing a procedure to fix the issue that day. They would only be looking at the development. I didn’t say anything. I was still trying to process the new info. Good news... they did not find that the fistula had redeveloped. At the end, I was abruptly told by my neurosurgeon that there was no new development and I didn’t need to see him anymore. Next good news... my recovery went smoothly. Little to no discomfort. More good news...I have an appointment scheduled with Mayo Clinic in Jacksonville Florida for a second opinion and to establish a relationship for further medical care, support, monitoring as I am in the process of moving to Florida. It is very confusing to get conflicting information from the various doctors involved with my case. I hope my experience with Mayo Clinic will allow me to get some questions answered. I will keep you all posted.

Hi.
My name is William Gallagher. In 1985 I was 19 years old. I was in college but I was working a summer job on a construction site.
It was seven days a week but we'll paid and I needed the money.
One day I realised something was wrong with my vision. As time went on I noticed my balance was off, my speech was sometimes slurred, my coordination was amiss, my ability to think and converse was impaired.
I went to all kinds of doctors and given different meds that I can barely remember but I knew something was seriously wrong.
This pandemic has given me the opportunity after all these years to finally try to find out what happened. It has ruined my life.
The only clue I have is I feel better when I can feel I have a cold coming on. As far as I know that is in the sinus area. That coupled with cognitive difficulties seems to point to CVST. I've had an MRI and it was fine. I'm now waiting to see a neurologist.
It's a struggle. Doctors have taken hundreds of blood tests over the years and all is fine. I'm on my own with this and I'm not going to give up. Thyroid, sugar, allergies, insulin resistance, liver, ammonia I've chased them all. This avenue though looks the most promising.
I'm sorry this post is short on specifics but if it offers anybody any hope or inspiration that's has to be good. Don't give up. Be the captain of your own ship. If you know something is wrong and your tests come back clear keep fighting. The internet is the gift that no library can match. Now is the age.
Thank you.

Hello @billykegs and welcome to Mayo Clinic Connect. You are welcome to share as much or as little as you would like and are comfortable with. Would you please come back and share an update once you meet with the neurologist?