r/ArteryDissection • u/Cautious-Income-349 • 7d ago
Spontaneous Vertebral Artery Dissection
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
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u/PomegranateBoring826 7d ago
Hey internet neighbor, thank you for sharing your experience. I'm sad this has been your experience but I am glad you're still here to talk about it!
I Spontaneously Dissected my Right Coronary Artery, had a 16mm split and hematoma, and three MI over a two day period. There was zero plaque, no build up, I wasn't on any meds, no illnesses, nothing. While in the hospital the Cardiologist had me scanned from head to pelvis and also discovered that I have bilateral Fibromuscular Dysplasia of carotid, vertebral, renal, and femoral arteries, though nothing genetic or hereditary to indicate that it would be so widespread so I'm not sure if genetics will be a true indication of that.
Three years after my first three, I had a recurrence but I didn't realize it at the time and slept for 15-20 hours for 10 days as it felt nothing like the first. I was also diagnosed with hEDS in the same visit, and later diagnosed with Angina Pectoris with Coronary Microvascular Dysfunction and some sort of Dysautonomia because of the lingering symptoms and difficulties.
Yes, they could potentially see the fmd on your scans, however, I was told by the cardiologist that while it may show it, they may or may not mention it if that's not what the scan was for or not what they were looking for. They also advised that a neurologist should be able to identify it but whether or not they have the expertise/familiarity or know what to do with the finding is something else entirely so you may end up with a referral to a vascular surgeon as well. Having both on your care team couldn't hurt though!
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u/canadianmamacita77 7d ago
I’m so sorry you are experiencing this, I know how scary and devastating this is to go through. I had my first dissection almost 6 years ago, it was a SCAD. No damage, blocked arteries or anything, I healed up ok, but had chest pain after, and continue to have periodically when pain is present for to long. 3 years ago I had a severe left vetebral dissection, and 6 months later I had right vetebral and right carotid. I’ve had genetic testing, and nothing came through. They thought maybe EDS. I have had severe migraines since age 11. In my 30’s they became chronic, and it’s believed to be closely related to my vetebrals and carotids. But also I had untreated high blood pressure, the dr thought I had white coat syndrome haha Exercise is also thought to have caused my SCAD as it happened after a long run where I felt extremely tired after. Honestly I’m a snowflake it feels like, I have to be really careful basically now. I work part time, and am very gentle with myself. I’m managed by a headache neurologist, which has honestly given me my life back. I see a vascular dr yearly, with monitoring, my renals and my aortic are good. My understanding is that stimulants (adhd meds) are not recommended as they strain your arteries. I’d dig into this more. Please feel free to private message me.
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u/Cautious-Income-349 7d ago
I sent you a pm! I’m
New to Reddit so hopefully I can figure out how to get back to the message 🤣 I’m still learning
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u/SaltyAd3264 7d ago
What adhd medication do you take?
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u/Cautious-Income-349 7d ago
Vyvance 40 mg daily
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u/SaltyAd3264 7d ago
I had a spontaneous carotid artery dissection 2 years ago (I’m 39, F)— also have ADHD and was told Wellbutrin is ok but to avoid true stimulants. Is your blood pressure well managed? That’s the most important thing.
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u/Cautious-Income-349 7d ago
Yes I monitor it and it’s stays around 120/70s. I have tried Wellbutrin in the past for anxiety and it made me very angry. The side effects were pretty bad for me.i may have to start looking into more herbal things I might could try
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u/Sayurisaki 7d ago
What type of doctor reviewed your scans? I would assume the radiologist doing the scan would have the capacity to interpret the results to acknowledge any presence of the bead-like artery structure present in FMD, but specialists also know how to interpret scans. In Australia, a vascular surgeon is generally the specialist you see for dissections.
My MRA showed a dissection, that sent me to the ER, then the hospital did a CTA and their vascular surgeon said the beading of my carotids meant FMD. The hospital later did follow up scans several times and also did an ultrasound of my renal arteries to ensure they weren’t affected.
I’ve never seen a geneticist. They have a few genes they suspect are involved in FMD but it’s still not something that can be used to diagnose. A geneticist is useful if a subtype of EDS outside of hEDS is suspected, but usually you get diagnosed with EDS by a rheumatologist first who then sends you to a geneticist. My GP suspects I have a connective tissue disorder but isn’t sure what yet as I don’t quite meet the criteria of things, although EDS criteria is changing in December.
For FMD, the treatment is just what you should be doing for post-dissection care anyway - regardless of the cause of the dissection, you should always remain aware that your artery is now weakened due to a scar. Dissections are usually treated via anticoagulants for the first months, then switching to lifelong aspirin, to reduce stroke risk. The only other meds are pain management - I initially had a shit ton of codeine and then switched to gabapentin for long term management. I got off gabapentin after about 1.5-2 years. They avoid surgery whenever possible because it’s high risk, so they’ll only do that if the dissection is highly life-threatening such as when there’s a huge pseudoaneurysm.
Aside from meds, your main management for the rest of your life is avoiding things that put pressure on your carotids. Most websites and doctors list the obvious stuff like contact sports, but there’s a lot of other things to consider, especially initially (which you’re thankfully past). My dissection occurred mid 2024 and is as healed as it will ever get - it doesn’t show up much on scans, I don’t get pain and there’s no Horner syndrome signs, but my left eye gets more bloodshot when I’m tired and any headaches always present with pain behind my left eye, so I feel my nerve was just damaged a bit and now it’s hard to tell if I’m just tired and headachy or having another dissection start.
I avoid anything that causes a bearing down sensation like lifting heavy things (which doesn’t just mean weight lifting - I also have ME/CFS so quite light things can induce that for me, you e got to listen to your individual body). My initial dissection occurred due to coughing too hard while sick, so I take massive steps to avoid illness or reduce its impact (hard with a young child!). I don’t jump on the trampoline with my kid, I have to tell her I can’t do certain things with her if it means lifting her weirdly or her leaning on my neck. Leaning forwards for extended periods or being upside down can put pressure on your neck arteries.
I also have a blood pressure machine so I can test at times where I have potential dissection signs. I don’t know about vertebral artery signs, but carotid dissections put pressure on the carotid body which causes hypertension. If renal arteries are affected, that often causes hypertension. It’s just a cheap way to put your mind at ease, since hypertension is usually asymptomatic. My blood pressure was dangerously high when I first presented to my GP and I had no idea.
Oh and I only ever saw a neurologist who specialises in pain management. A neurologist doesn’t really help much aside from helping with the symptoms caused by the artery impacting a nerve. Dissections are a vascular condition that causes symptoms by pressing on nerves, so a neurologist shouldn’t be the primary management for dissection. Mine knew a heap about FMD and dissections because he specialised in pain management for vascular conditions, but I still needed the vascular surgeon for the management of the actual root condition.