I was diagnosed with a CVST a year and a half ago. I've been doing well, but it is always on my mind. It is quite rare and I'm interested in hearing stories from anyone who has been through something similar.
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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).
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).
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).
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.
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.
This is my story and I hope it helps someone.
49 and Male diagnosed November 2022 with acute non-occlusive DVST in my left transfers/sigmoid sinus during an ER visit. This was the forth time I went to the ER for a "head ache" and thanks to the radiologist they found my primary cause of my pain. Finally I have the correct rabbit hole to look into. I'm recovering now but I am very scared too. I hope to re-post in a year from now.
I believe it started over a year ago. Working in construction, I was exposed to high levels of lead during a demolition/painting project on an 1800's old home. At the same time, I received my second Madera vaccination and had a bad headache for the week. I shrugged it off as I do much of my life pains. I'm not sure what exactly caused my thrombosis but the symptoms started there. I felt like I was having panic attacks in the mornings followed by cluster type head pain. Specifically the left side of my face would get hot/numb and headaches in my frontal lob. I felt sick to my stomach constantly. My regular Dr. tried to put me on Paxel. That was awful. I scheduled a neurologist appointment, but they were all 8 months or more booked up. So no help for a long time and then, he said it was cluster headaches and migraines. Sent me on my way. I knew my symptoms very well. I described pain that was spot on with ICP. The first ER visit showed MRI findings of idiopathic intracranial hypertension. Dr. said everyone with age has that. I had seen several physician assistants. No one knew what to say to me. The second and third ER visit was just meds for migraines and sent me home. I lost all hope in our Dr.s and caretakers. I thought I was going to die at any time.
My advise is to tell the hospital it's "more than a headache". I was stroking out and telling them nothing. Now I feel like I have cranial nerve damage and I'm miserable. I hope i didn't wait to long and end up with Post-Thrombotic Syndrome. That's what my stroke nurse said could be the case. I do not want to live this way forever and my wife has to watch me suffer. God help us all.
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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.
In November 2018, I was diagnosed with CVST after visiting urgent care and than my doctor over the span of 7 days. The initial diagnoses was probably a “sinus infection” but when I started crying in the office she sent me for a CT scan.
I got a call the same day that I needed to go to the hospital to have an MRI bc I had a possible thrombosis. I remember being hysterical and scared but somewhat relieved they found the reason for my severe headaches, blurry vision and vomiting.
Just had my follow-up MRV and the doctor said it’s great news because they vein has partially opened allowing blood to flow and I’ll be off blood thinners in 2 months.
I feel very fortunate because my vision came back to normal and the headaches aren’t every day. I’m trying to get used to my “new normal” and navigate the anxiety of having this happen again.
Hoping to hear some other stories and if what we went through has a low risk of happening again.
BTW…the cause was determined to be from oral contraceptives after all blood tests came back normal.
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?
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!
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
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