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.