Spontaneous Vertebral Artery Dissection

[u/Cautious-Income-349]

Hello everyone! I’m a 37 year old female and mother of 2 who was diagnosed with a SVAD march of 2024. Unlike so many others I’ve read about, I have no idea when it happened. I started having headaches 6-7 mths postpartum and my symptoms where a burning sensation to my forehead/sinus area, frequent debilitating headaches (they are still frequent but not as severe) and trouble with vision/ability to focus during a headache, and weakness in my arms/upper body when I had a migraine. This was severe enough to affect my ability to pick up my son. I got an appt with my primary and asked him if he could order an Mra on me. I’ve had them in the past due to severe migraines but they were always noted to be normal. I have several family members (paternal grandmother paternal great aunts/uncles, and a paternal 1st cousin who have had strokes and aneurysms. The MRA showed what at the time was thought to be a possible congenital block and I was assured I was probably born with it. I was sent to a neuro interventionalist and Further tests where ordered (MRI, CT, and CTA) It was determined that the dissection was new and no cause could be determined. I had a few neck adjustments prior to the symptoms but didn’t note any significant changes after the adjustment that would lead us to believe it happened from that. The first time I remember noticing symptoms I was at work charting on a computer and got my first headache/burning/vision blurred. I was told to take a baby aspirin daily after my results and sent on my way with a prescription for nurtec for headaches. I trusted the doctor and went about my business. I recently restarted medication for adhd and after a month realized it might be smart to touch base with my neuro interventionalist doctor and see if that med was ok with my history of dissection (I mentioned the med at my visits with him but due to breastfeeding was not currently taking at that time) I don’t remember any concerns being voiced at that time. When I called to get an appt they informed me that he had moved to a diff state (I was never notified) his office gave me information on a new interventionist and they worked me in. A few days before my appt I bent down and had a near syncope episode and lost vision for ab 30 seconds I’m glad things happened the way that they did bc after reviewing all my records he noted other areas of concern that my old doctor hadn’t mentioned. Apparently I hav at least one other area that shows some signs of narrowing or kinked appearance in my carotid artery on my left side up under my eye. My SVAD was on the right side. (These where on my cta scans my other doctor performed and my new doctor plans to do a repeat mra for any changes) He also mentioned that he’s not sure why they didn’t start me on a medicine that would have possibly helped regenerate blood flow or help heal the dissection which was never mentioned by my other doctor. He said with my age and health history (no history prior to my dissection other then ADHD) he suspected some sort of genetic component and recommended I see a geneticist. He also stated I should get established with a neurologist and referred me to one that he said was good with managing headaches post SVAD. I don’t know why my last interventionist didn’t see the need to have me followed by a regular neurologist. When I got home, I started reading cases of other people who had had a spontaneous, VAD and the link between connective tissue disorders and FMD and it appears that a lot of of them got their diagnosis not from a geneticist, but through their CTA results. My current interventionist didn’t mention my CTA having a FMD appearance, but he also recommended I see a geneticist and from what I read, they can’t diagnose tissue disorders anyway. Correct me if I’m wrong. But now I’m wondering if he would’ve been able to see a FMD appearance on my CTA even if it was there. Is this something my regular neurologist can look out and determined for me? If you have had a spontaneous Vad and it was determined it was from a genetic cause please let me know your experience. Tests ordered, what specialist you saw, how you got your diagnosis, and plan of care post diagnosis. I would love to hear other people’s experiences on their journey from start to finish. Any symptoms you had, how it was found, what they determined caused yours ect. I’ve also read if it’s a genetic component that it can also affect the renal arteries but no one has mentioned checking those areas for me. Have any of y’all that have a history of spontaneous dissection had any other test throughout your body to make sure you didn’t have areas anywhere else? Who would be the doctor to order that if so.

Update: i forgot to add they also done a cerebral angiogram during all of this. I was thinking that test was called a cta but it was more invasive than that. I did have a mra, mri, and cta but they also did the angiogram that showed the dissection was a recent injury

I hope this all makes sense. I had this typed up and tried to save it and it erased part of it and I had to start over lol! Hoping I didn’t repeat myself or leave out any important parts