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Diagnosed with Cerebral Venous Sinus Thrombosis (CVST)
Stroke & Cerebrovascular Diseases | Last Active: Oct 16 11:56am | Replies (91)Comment receiving replies
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.
Replies to "This is my story and I hope it helps someone. 49 and Male diagnosed November 2022..."
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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.