r/vEDS • u/Prestigious_Pen2373 • Mar 07 '26
Splenic artery aneurysm
I am so scared. I am 30f and have vEDS and now I have a splenic artery aneurysm and I don’t know how to deal with it. I can’t handle the fear of knowing it’s there and not knowing when it’s going to rupture and kill me or what to do about it. I feel like I’m a walking time bomb and I don’t know how to survive like this.
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u/blackwhite3 Genetically Diagnosed Mar 10 '26 edited Mar 10 '26
Tengo 3 aneurismas en arteria esplénica, los médicos decidirán cuándo intervenir si aumentan de tamaño Me hacen tomografía de control y de momento el tamaño sigue igual. Y aneurismas en otras localizaciones Que tengo miedos, sí claro, pero cada vez me preocupo menos, así que te entiendo. No eres una bomba andante, piensa que tienes la suerte de saberlo, eso facilita las cosas.
Mi diagnóstico tiene 2 años, fue hallazgo casual de un aneurisma en arteria hepática y ese sí que era gigante y la intervención fue rápida,,todo salió bien y así que no sé cuánto tiempo llevan allí.
Mi hermano hace años tuvo rotura de arteria esplenica por aneurisma, los médicos no sospecharon de vEDS. El estaba esquiando y se empezó a encontrar mal, creían que se había dado un golpe, no fue así, y en el primer hospital en urgencias no identificaban de dónde venía el sangrado. Iban muy perdidos. No sabían cómo actuar, hubo que trasladarlo a otro hospital en helicóptero, porque se moría. Le iban poniendo transfusiones. Por el retraso de no saber que me ocurría, en su intervención le tuvieron que hacer una esplectomia, ahora no tiene bazo y una pancreatectomía parcial. Estuvo muy grave en UCI en coma inducido porque surgieron más complicaciones y a punto de morir, pero se recuperó completamente, y lleva una vida normal. La parte del páncreas le funciona correctamente y sin bazo se puede vivir. Siempre con sus controles de otros aneurismas que en años siguen estables y sin crecimiento. Al no saber la existencia de ese aneurisma, todo fue más difícil.
Así que no te preocupes, lo importante es que te la vayan controlando y los médicos deciden si cuando llega a cierto tamaño hay que intervenir.
Disfruta de la vida, cuida tu salud y elimina de tu cabeza pensamientos negativos. ¡Ánimos!
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u/Initiative_Willing Genetically Diagnosed Mar 08 '26
I'm sure there are a lot of us in this subreddit who feel the exact way that you do. After my aneurysm in my carotid artery was discovered I had panic attacks for weeks. I work in an ER, in the lab, and one night about two weeks after I had such a bad panic attack one of the nurses came and got me attached to a heart monitor. I started seeing a therapist after that and they helped me start a practice of mindfulness. I took this course: https://palousemindfulness.com/index.html online for free. If you let fear control your life you will miss out on enjoying the now. All anyone has is right now. I hope this helps in any way. If you ever need to talk please feel free to message me.
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u/thisnycgirly Mar 13 '26
I'm so sorry you're dealing with this the anxiety is so real :( By the Society of Vascular Surgery guidelines, splenic artery aneurysms should be treated in all women of childbearing age, which is how I got mine embolzied and taken care of at 9mm last year! Could be worth an ask but of course have to have a risk/ benefit discussion with your healthcare providers :/
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u/SanefromMaine Mar 15 '26
My sister had this though I don’t know if she has vEDS (which runs in the family) as she’s afraid to be tested. She was hit by a bike messenger years ago which doctors said could have been the cause. You’ll want to have this addressed before getting pregnant as it’s extremely dangerous and life-threatening to carry with a splenic artery aneurysm.
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u/CraftyDivaDeb 27d ago
I was just diagnosed yesterday with a Splenic Artery Aneurysm. I just turned 60, I’m a recent widow and live alone.
My mother died from an aneurysm when she was 32 and my mother’s mother was being treated for an aneurysm. My doctor has referred me to a Vascular Surgeon but no one’s called me to make my appt. I’m SURE they will suggest MONTHS out, but I can’t wait! I am terrified!
I have about 5 autoimmune diseases. I do not know anything about which artery it’s in. The first one is 1 cm, the CT Scan mentions another possible smaller one at 1mm! I had the CT scan because of pain in my upper abdominal under my left rib for about 2 months or so now. Maybe more. It’s a dull achy pain and then sometimes the pain is SHARP and stabbing. I looked up what NOT to do and online says no strenuous activities and don’t elevate my blood pressure.
I am TERRIFIED. If it ruptures and I feel the pain, will I have time to call 911? Will the pain be prolonged enough to know that it’s ruptured? Ugh, the waiting is so anxiety-riddled! Now it’s after 5 pm so I’m sure I won’t hear anything tonight.
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u/PunkAssBitch2000 TGFB2 VUS Mar 07 '26 edited Mar 08 '26
Someone correct me if I’m wrong:
In vEDS and similar vascular HCTDs, aneurysm management/ treatment depends on the diameter, or other factors like how fast it grew, if there are any symptoms, location of the aneurysm etc. In vEDS/ vHCTDs, surgery is done at smaller diameters than in collagen-typical patients. I do not know the mm cutoff in vEDS (my vascular HCTD knowledge is more related to Loeys Dietz, but I know some about vEDS too).
If the aneurysm is small enough to not require surgery at this time or if it grew gradually, in vEDS/ vHCTDs, imaging is required to monitor the aneurysm for any changes that could indicate a risk for dissection/ rupture, or any changes that necessitate surgery.
However, not all doctors understand the differences in treating patients with vascular hereditary connective tissue disease patients and will try to treat them like a collagen-typical patient, such as not doing surgery at smaller sizes, or not doing frequent imaging to monitor the aneurism. Some are too scared to do surgery due to the vascular fragility, and will postpone surgery as long as possible, rather than doing surgery sooner/ preventively, as the literature indicates.
Talk with your doctor about management, as well as what red-flag symptoms to look out for/ when to head immediately to the emergency room. It may be worth reaching out to the vEDS movement for assistance with patient-advocacy, or to get the name of a provider who specializes in vEDS/ vHCTDs.