Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)

Such a strange brew this condition is :).

My own history - I'm an active 50.5 yo male. Never a smoker. Drink ultra-ocassionally (1-2oz scotch about 1x/month). An extraordinary wife of what will be 20yrs in June. Trifecta of boys. We all take the 'Buckaroo Banzai' approach to life - going in 20 different directions at once. We train in brazilian jiu-jitsu (and I workout/stretch/etc on other days just to deal with THAT :)). Since my recent diagnosis, I've gone on leave working as a PA (head/neck surgery - ironically) and continuing with the same group in translational search (mostly maths/stats modeling).

Diagnostic backdrop:
About 6+ wks ago I began noticing a pulsating sound in my right ear. No other symptoms. At first it was barely noticeable. Kinda chalked it up to some of the facial pressure one feels during a bout of sinusitis - either that or perhaps a bit of ear barotrauma while teaching my kids how to scuba dive (I'm a diving instructor on the side).

2 weeks pass and the sound is more noticeable with the characteristic 'whooshing' sound you would notice with pulsatile tinnitus (PT)). Given my tenure in medicine, I knew this was a symptom we'd need to explore sooner rather than later (which is why I'm also interested in having my case presented in a study where PT may be evaluated as another landmark symptom of CVST).

CT:
My CT scan revealed right transverse-sigmoid CVST with 'possible' stricture around the C-5 cervical spine level of the right internal jugular vein (RIJV). Funny that I had just had a fusion at C4-C5 in March of this year. Maybe a relationship, but not yet convinced.

My own doc started me on Eliquis immediately.

When I view the CT images and do some of the recon work, it looks to me like the RIJV is likely a bit too narrow in size in the first place ('hypoplastic'). Visualizing the vessel below C5 is iffy at best, so difficult to confirm the radiologist's interpretation of possible RIJV stricture there. Kinda need more info into that and the overall anatomy of the RIJV, but we have a more immediate need to address (see possible AV fistula below).

MRV:
Follow up MRV about 2 wks ago revealed right partial thrombosis of the transverse sinus all the way to the confluence (where the superior sagittal sinus [SSS] and transverse sinuses [TS] meet). Drainage flow was robust predominantly down the left sinuses into the LIJV. This makes sense, my particular anatomic variation of the confluence [type 2aII with favor toward the left transverse sinus] is physically more inclined toward left sided drainage. But there's also an odd 'kink' (more like a corkscrew shape) just to the right of where the right transverse sinus ties into the confluence. Not convinced this is remarkable either, but amusing at least.

The Logjam:
Things get more problematic downstream: there's complete blockage of the right sigmoid sinus into the right internal jugular. And it looks like there's been some accessory vessel recruitment peripheral to the sigmoid sinus on the MRV, but nothing emptying into the RIJV. One of those vessels appears to be a cortical artery (really strong signal on MRV). Possibly an arterio-venous fistula (AVF) there which we're gonna have to confirm w angiogram in 3 weeks.

Some requisite lit review and thoughts:
So ok, my current gestalt is that right sided sinus drainage may never have been in the greatest position to do its job IF the RIJV is perhaps underdeveloped .... but that's still TBD. No hypercoag tests just yet. We'll get there. Probably not a bad time to get them during the angio.

Given the sheer length of the thrombosis, re-opening the pipe seems a bit of a shot-in-the-dark. There are a few case studies demo'ing the use of aggressive IV heparin / then warfarin by mouth in recanalizing the IJV (some patients who also underwent mechanical thrombectomy. I don't think this has been determined to be extraordinarily successful beyond 8 weeks in the lit. But those comprise barely a handful of case-studies. And again, how 'chronic' my particular trainwreck may be is kinda hard to tell at the moment.

Dealing with the more critical issue of a possible AVF has to come first. The treatment plan after that, well, we'll see. I'm not exactly encouraged by what I'm seeing and what my vascular neurologist has confirmed (he's as doubtlful of recanalization as I am, but I think post angiogram and any AV fistula repair I'd like to give it a reasonable shot).

I'll post some notes post angio. Maybe someone else may find a similar sequence of events that might be helpful in Dx/Rx. Happy to answer any Q's.

So this is quite a parable to be told. An ER doc says ' everyone with age' has idiopathic intracranial hypertension? Bunk. The incidence (number of new cases estimated per year) in the US is about 1 per 100,000. I have zero clue why the ER doc would be so dismissive (well, I DO have some possible thoughts given current medical trends, but that's an entirely different side rant).

One thing I didn't notice in your comment was whether or not an initial CT had been ordered. This under a careful eye might have revealed the initial partial thrombosis, and then an MRV (MRI venogram) would be a solid next step to confirm the initial radiologic interpretation and help evaluate how extensive the thrombosis is. The fact that the neurologist didn't pick up on this underlines a particular problem noted in the medical literature on CVST, namely training in how to reliably diagnose CVSTs in patients (technically any neurologist should be able to get this right. And many do. But it's usually the rather sparse vascular neurologic subspecialists who tend to hit this particular nail).

Conditions like this require multiple sets of eyes in many cases (especially the more complicated they get). And those sets of eyes absolutely need to have transparent and open discussions with each other on a patient's behalf. If that's not happening, find a cadre of caregivers who will.

Good morning, my name is LaKeyshia and I was diagnosed with CVST on last week and I also have IHH. I have experiencing whooping in my ears, face pain, severe headaches, nausea, vomiting, vision problems and over all ill. After we received my MRI & MRV results (revealed complete thrombosis of the left transverse sinus) the neurologist placed me on plavix and Hydrochlorothazide. I am having really bad headaches nausea dizziness vomiting and just over all ill. I have never had high blood pressure before but My blood pressure has been extremely high for the past couple of week even with taking this new blood pressure medicine Hydrochlorothazide I notice most women on this post were hospitalized and treated with heparin. I’m curious if this course of treatment I am on plavix is aggressive enough. Is anyone being treated with Plavix? I am terrified and extremely stressed out about this diagnosis. Does the clot dissolve or go away or is this a permanent condition. Has anyone had the clot complete go away? I also sent in my records to the Mayo Clinic in to get a second opinion. Any suggestions or information would be greatly appreciated.

Hello I was diagnosed with CVST last week and was curious if you were placed on plavix or heparin? Thank you.

Hello. I was diagnosed with cvst/dvst about 6 months ago. Had aphasia for a couple hours. Seem stable and I’m on Eliquis but MRIs are showing the thrombosis still there and not dissolving. Seems to be no real answers from neurologists. I feel like I’m having some memory loss, which feels very disconcerting. Mine seems caused by oral contraceptives, dehydration, stress, and long-haul travel combination. Is anyone on any treatment in addition to blood thinners? It’s disturbing to just have it sit there affecting blood flow.

Hi. In March 2023I was diagnosed with CVST affecting right transverse sinus ( from the begining it was partialy recanalised) , sigmoid sinus and the bulb of right internal jugular vein . I am on DOAC and after 8 weeks the MRI veno revealed same images -no additional recanalisation. I have daily dizziness and I think perhaps migraines ( although no headaches). Not sure if ever will get rid of dizziness. Any comments?

Hi !
Sorry to hear about this. Did you develop an extended clot in the jugular vein despite treatment with Eliquis? Thank you in anticipation for your answer.

Cristina ( CVST diag in March 2023)

Hello. My name is Domingas. I'm 33 years old. I'm From RI. At 8 Months pregnant I was experiencing daily headaches that wouldn't go away and had difficulty walking. I complained to my OBGYN of the symptoms I was experiencing and my Obgyn promised me that it must be pregnancy related and continued to send me home each time. Fast forward 3 weeks later on 7/15/22 I delivered a healthy baby boy. 3 hours after delivery I suffered a thunderclap migraine and It got worse every time I stood up. I complained to the doctors and nurses for 12 hours of my symptoms and I was ignored each time stating that I just delivered a baby, and my symptoms are related to that. I demanded further testing since my symptoms wasn't improving. On 7/16/22 I went for a MRI and MRV and when my test results came back a few hours later I was surrounded by so many doctors that I started crying thinking I was Dying. I was diagnosed with CVST and a CSF leak at the same time. MRI Results: Vasculature: Abnormally distended and hypointense anterior one third of the superior sagittal sinus. Postcontrast MR imaging demonstrates mural enhancement with a tubular filling defect. MR venography of the BRAIN: There is abnormal flow in the anterior one third of the superior sagittal sinus. I spent 2 weeks in the hospital and while I was in the Hospital I was put on Heparin (IV) and after 3 days I was switched to Lovenox injections 120 mg 2x daily for 6 months due to breast feeding. After 6 months I was switched to Eliquis 5mg for 4 months Due to developing ulcers from the needles which at that point I stopped breast feeding. I saw a hematologist and he stated that the blood clot developed during pregnancy and there is no need to do further testing. It's been 10 months and the blood clot has finally dissolved but I'm experiencing memory loss and I'm super irritable and did I fail to mention that I'm also dealing with Post Partum depression. I want to get a 2nd opinion from a different Neurologist about the memory loss and the irritability.

I also forgot to mention that 3 months into my diagnosis, I started getting seizures and was started on Keppra.

I was on heparin for 2 weeks, than Rivaroxaban for 2 months that I switched to Apixaban hoping that dizziness will disappeared. After almost 3 months I still have disequilibrium when moving. How is your diziness - better , worse ? Thanks