Cerebral venous sinus thrombosis (cvst)

@gofffamilyquest - how is your husband doing?

Thank you Lisa! I have indeed reached out to the link that you provided. Hopefully we will hear something soon...

Welcome to Mayo clinic Connect, @gofffamilyquest. It sounds like a lot of unknowns, wondering why this is happening and waiting for the next bomb to drop. I'm so sorry to hear all this.

If you'd like to make an appointment for a second opinion for him at Mayo Clinic, please follow this link http://mayocl.in/1mtmR63.

All the best on your quest for answers for him.

Hello All,

I came to this site in hopes of looking for some answers. My husband has had blood clots for over 30 yrs. He has the Protein S Deficiency, The Factor 5, The Anti-phospholipid Antibodies, and a few more that I can not think of right now. He has hundreds of Blood Clots to his legs and arms. Has had Dozens of Pulmonary Emboli's, has thrown them to his heart and even about 8 years ago had a Previous CVST, that we thought was all "healed".

In October we went to the Urgent Care because my husband could not hear... An ambulance ride later, we are in the Hospital being told that his O2 Levels were Extremely Low, his body was "filled" with extreme levels of Carbon Dioxide, and he would need to be placed on a "BPap" Machine to expel the "Dioxide". Unfortunately my husband is Extremely Facial Claustrophobic, and with the Numbers of Dioxide increasing, they had to intubate him. 1 Week later they discharge him, with no known reason for what happened. They set up an Oxygen take for use when his O2 numbers get low. They mentioned that he had had some Heart Issues and refer us to a Heart Dr.

Fast forward to November 27, I have to call an ambulance to my home as my husband is unconscious, and I am not able to wake him. His O2 bounced between 46 & 76. We go to ER again and I explain what happened in the previous month. Same thing, his O2 levels are in the dirt and his Carbon Dioxide Levels are through the roof again, and they can not get him conscious. They try to Not Intubate him, and instead try the High Flow Heated Oxygen to no avail and had to intubate him again. They completed head CT, MRI & MRI with Contrast. Several days later, we are told that he has had a "Type" of a Stroke, again a few days in they get his levels to normal and discharge him home with continued use of oxygen when numbers lower, with another referral to for an Urgent Sleep Study (Which as of today, we still have not had). We see the Heart Dr. in December and there are no abnormalities according to him.

Fast forward again to December 24th and yet again, I need to call an ambulance as my Husband is unconscious, will not wake even with Oxygen and sternal rubs. We get him to the ER and this time his O2 Sats are in the toilet again, he has Extremely Elevated Levels of Carbon Dioxide & Carbon Monoxide. They were able this time to get him to tolerate the High Flow Nasal Canula. At this ER stay they inform us that at his November Stay they had discovered a "Unique" Cluster of Blood Clots called a CVST, and another unique cluster at the Back of his Sinus Cavity at the back of his brain. And yet again, after a few days of his O2 levels returning to normal they send him home with orders to use oxygen when his levels lower.

I am waiting for the "Bomb" to drop in January. No one can answer the question as to "Why this is Happening?"

They returned him to Lovenox Injections for managing his Blood Disorders after the hospital stay in October, and yet this continues to happen. We have Oxygen at Home for when his O2 levels decrease, and yet it continues to happen.... His Hematologist Expert at Oregon Health Sciences University (OHSU) in Portland is trying to reach out to other Pulmonology Experts in our State to no avail, and I am Extremely Concerned and looking for help.

Does anyone know if there is a way to reach out to the Mayo for assistance or where to go to next???

Two years ago my 6 year old daughter was diagnosed with mastoiditis, CSVT and an abcess in her brain. After IV antibiotics for 6 weeks, additional oral antibiotics for 2 weeks, blood thinners a reoeat mri showed no clot or abcess. It did show optic protrusion which we had a lumbar puncture and that helped her tremendously. My daughter had an infection behind her ear, that rotted part of her skull. By time we went to the ER she was completley septic. Had very few symptoms. Shes doing great now however her mri shows "slow flow" which im told is normal for a CSVT? She has memory issues, slurring speech, cognitive issues.

Has anyone else had an mri show thia post CSVT and what does post op life look like for you? I keep getting told its normal but slow flow in a brain doesnt sound "normal" to me.

Hello, I was diagnosed with CVST two weeks ago. I was suffering from bad headaches for three weeks, along with pain in my ear and those "whooshing" sounds as some of you have described them. I went to emergency and was initially diagnosed with a migraine, but as I often have migraines, I knew this was something else. Thankfully, the doctor listened to me and got me in for a CT scan which showed a suspected thrombosis. Had an MRI, and that confirmed the CVST with two blood clots. I was given Apixaban, and my initial headaches were gone within 48 hours. My next MRI is schedule in a few weeks, and obviously the hope is that it will show the clots have become smaller.

I'm 48, healthy, non-smoker, and I workout daily. All my blood work and tests have come back "unremarkable". So to say that this was a shock is an understatement, and I can see many of you here feel the same way. Right now I'm just thankful we caught this when we did. I feel very fortunate.

I'm still on Apixaban, and it sounds like I will be for some time. How does everyone cope after this? My biggest fear is suffering another stroke, so every time I feel a random pinch in my eye, or an ear ache, or a shooting pain through the skull I can't help but fear the worst. I still get headaches, which I'm told is normal, and Tylenol does seem to help with those so far. I know I need to give this time but its hard grasping the severity of it all.

I'm thankful to have found this site. I'm sorry so many of us are going through this, some worse than others.

Hey guys. I too have been diagnoses with csvt about a month ago. I’m an extremely active sports loving guy and love driving. I have a small clot and don’t have any issues other than headaches. I’m on thinners from the time I got diagnosed but I’m still very worried about my condition and not sure if it’s getting better or worse. There were no headaches for a few days but today I’m experiencing mild to medium pain for which I had to take a pain killer. How do I know if I’m getting better or worse? My next MRI is scheduled after 2 months.

Hi am am now 42 years old I was less than a month from my 40th birthday when my husband took me to the er for the top hospital in our state for what we thought was an infection from a horrible oral surgery. There er doc didn’t spend 15 mins and gave me an antibiotic and sent me home. I couldn’t take it, the pain in my head my face my entire right side, loss of memory, confusion, vision problems, and the list continued. I begged him not to take me home so he took me to a different hospital different affiliation where at least this for said let’s run a ct scan. A bit latter I was diagnosed with 3 blood clots in my transverse and sigmoid sinus as well as an almost completely occluded internal jugular vein on the right side. I was rushed back via ambulance to the original hospital who turned me away. All my blood work is abnormal I have huge red blood cells that don’t carry enough oxygen have developed empty sella, compression of the optic nerve, remain in pain all the time with no treatment. I have loss of memory, confusion, the inability to do things I used to do all the time. I now have heart problems, nodules on my right lung. Protein in my urine, anemia, gastroparisis, a staph infection in my sinus and the list goes on. With no answers. Most recently in November they performed an angiogram to check why my tinnitus is so bad and the performing dr injured my radial artery as well as a vein nearby. Still no answers as to why. Had a positive Ana and was told it wasn’t lupus even thou I had previous been diagnosed with discoid lupus in my scalp via biopsy. I have been told I am on blood thinner the rest of my life as my one large blood clot (it was all only one not three) will never go away. I have no diagnosis for any of my other problems and just get passed from dr to dr to dr with no answers or help or relief. I continue to get worse and worse I have begged for help and get nothing. I’m dismissed by most drs, others have altered my chart to suite themselves and write flat out lies and still I can’t get a diagnosis medicine or help. I have no ability to function and miss watching my kids grow up I fall all the time lose my balance have horrible tremors, horrible adema last attack I gained over forty pounds for six months. No dr has pursued anything and just says maybe ask ???? Some other dr. I’ve been all over my state to the three top hospital centers in the state and have not gotten anywhere but worse and made to feel crazy and insignificant. I just wish one dr would step up and help. My husband and I continue to search for answers but 3 years on July 27 and I have gained so many more medical problems with no relief from the beginning. My goal is to get care where I can function and start a support group for women and medical gaslighting it is a horrible thing. I ask myself daily why is my life so insignificant to each of these drs how could they be a dr and not want to help?

I sympathize with each of you who have this disease as well as the others that come along or can come along. I hope you are able to get the proper treatment and care. I have watched my children fade away they were my world now I can’t even hardly get them to see me I have lost everything in losing them. My life is miserable and still I try and find answers and get no where but worse.

So I am also about your age, 20yrs of BJJ , also a interventional radiology/neuroradiology RN. last 18months developed several acute (COVID) and chronic CVT, resolved with Eliqiuis and recently redeveloped CVT again. I been spending hours looking at my MRI/CT images, I see evidence that I have had CVT years in the past in 2-3 areas and now they are small, abnormally, vascularized SOL , looks like old clot thats fibrosed . That occupy near a sinus or where a superficial cortical vein would have been. Which obviously puts you at higher risk for repeat thrombosis. Noticed L optic nerve sheath enhancement and slight L optic nerve enlargement compared to right on a MRI years before all of this. (small L jugular foramen) so that side is the trouble side for me. I realized that their is a likely correlation between repeated chokes over years and CVT. especially cause I made mastering choke escapes my speciality so I let the chokes get super deep to battle test my escapes but that was also creating repeated moments of cerebral venous pressure/ venous stasis several thousand times over 20yrs. I would be a interesting study. Your case sounds like you had some pre existing AV anomalies, but I think you probably could appreciate that a correlation might exist. Old MRI pic posted

I was diagnosed with CVST at age 36, in 2021. I had no seizure or swelling, only a headache and neck pain on the left side for 8 days. When I started seeing fireworks I went to the ER where they found the large clot. All blood tests and heart tests were clear. No cancers, no underlying factors. After all the tests, the Coumadin, Plavix, the whole bit, they’ve now removed me from Plavix and moved to a baby aspirin daily. I am beginning to have some similar symptoms, like neck pain, and some headaches here and there, what are the odds of getting another CVST in the same place?