# \#stories **URL:** https://avmsurvivors.org/tag/stories/1.md [Latest](https://avmsurvivors.org/latest.md) · [Categories](https://avmsurvivors.org/categories.md) · [Tags](https://avmsurvivors.org/tags.md) --- ## [Right Frontal AVM diagnosed from Bleed](https://avmsurvivors.org/t/right-frontal-avm-diagnosed-from-bleed/32075)
**Author:** [@Priya](https://avmsurvivors.org/u/Priya)\ **Replies:** 12\ **Last updated:** [October 22, 2026, 7:43am UTC](https://avmsurvivors.org/t/right-frontal-avm-diagnosed-from-bleed/32075 "2026-10-22T07:43:08Z")
Hi everyone. I (30, F)am from India (treatment hospital Artemis in north). I was diagnosed with a right frontal AVM after I had a bleed in Feb-26 (classic thunderclap headache with vomiting). I was admitted, managed (no… --- ## [Post Embolization Struggles](https://avmsurvivors.org/t/post-embolization-struggles/32414)
**Author:** [@ellery](https://avmsurvivors.org/u/ellery)\ **Replies:** 21\ **Last updated:** [October 20, 2026, 8:15am UTC](https://avmsurvivors.org/t/post-embolization-struggles/32414 "2026-10-20T08:15:17Z")
Hi everyone, New here. I have a davf that was diagnosed in June after nearly a year of doctors telling me it was stress. It was diagnosed as a grade 1 via a DSA in June but I had my embolization last Thursday and they s… --- ## [Life after DAVF Embolization - The mental battle](https://avmsurvivors.org/t/life-after-davf-embolization-the-mental-battle/32360)
**Author:** [@Sophia](https://avmsurvivors.org/u/Sophia)\ **Replies:** 33\ **Last updated:** [October 2, 2026, 8:25am UTC](https://avmsurvivors.org/t/life-after-davf-embolization-the-mental-battle/32360 "2026-10-02T08:25:32Z")
Hi All, Newbie here. I’m very grateful to have found this community as I’m feeling quite isolated In this discovery and life post embolization. I am very early into recovery, it will be 2 weeks this Friday since my Emb… --- ## [Hello from a caregiver of Spinal AVF survivor](https://avmsurvivors.org/t/hello-from-a-caregiver-of-spinal-avf-survivor/32369)
**Author:** [@dbasak](https://avmsurvivors.org/u/dbasak)\ **Replies:** 4\ **Last updated:** [September 29, 2026, 11:10am UTC](https://avmsurvivors.org/t/hello-from-a-caregiver-of-spinal-avf-survivor/32369 "2026-09-29T11:10:29Z")
Hi everyone, this is Deb! I’m new here and wanted to introduce myself and my dad who is an Spinal AVM Fistula survivor. We are primarily based in India. My dad, 71 yo, is the patient and I was his primary caregiver unti… --- ## [Need Help](https://avmsurvivors.org/t/need-help/30994)
**Author:** [@Aanie](https://avmsurvivors.org/u/Aanie)\ **Replies:** 16\ **Last updated:** [September 20, 2026, 5:58pm UTC](https://avmsurvivors.org/t/need-help/30994 "2026-09-20T17:58:03Z")
Hi everyone, We are extremely devastated.I dont know what to think need some insight and some success stories.My husband is diagnosed with avm through nocturnal seizure about a year ago,been on antiseizurenow. We are no… --- ## [Hidden AVM - 14 years post diagnosis and left untreated](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348)
**Author:** [@Stephtheunicorn](https://avmsurvivors.org/u/Stephtheunicorn)\ **Replies:** 3\ **Last updated:** [September 19, 2026, 8:04am UTC](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348 "2026-09-19T08:04:20Z")
My AVM was diagnosed in 2012, 5 years after I had a scan that revealed my right eye socket being eroded away. By the time the doctors did the correct scan that actually showed my AVM (through the groin) as it doesn’t sho… --- ## [Possible informed consent malpractice](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321)
**Author:** [@BAAS](https://avmsurvivors.org/u/BAAS)\ **Replies:** 9\ **Last updated:** [September 8, 2026, 4:17am UTC](https://avmsurvivors.org/t/possible-informed-consent-malpractice/32321 "2026-09-08T04:17:53Z")
I am pursuing consultations for informed-consent malpractice, but I have to post for anyone who is in a similar situation or may recognize this behavior in their own journey. My Dr. was eager to operate and downplayed th… --- ## [11 years post AVM Diagnosis](https://avmsurvivors.org/t/11-years-post-avm-diagnosis/32309)
**Author:** [@thekartikmehra](https://avmsurvivors.org/u/thekartikmehra)\ **Replies:** 3\ **Last updated:** [September 6, 2026, 9:39pm UTC](https://avmsurvivors.org/t/11-years-post-avm-diagnosis/32309 "2026-09-06T21:39:57Z")
Eleven years ago, my life changed in a way I could never have imagined. That day, I held my brain AVM report in one hand and the result of my secondary high school examination in the other. I had stood first in my school… --- ## [Left temporal AVM rupture right after conscription](https://avmsurvivors.org/t/left-temporal-avm-rupture-right-after-conscription/32315)
**Author:** [@Karizan](https://avmsurvivors.org/u/Karizan)\ **Replies:** 5\ **Last updated:** [September 2, 2026, 4:27pm UTC](https://avmsurvivors.org/t/left-temporal-avm-rupture-right-after-conscription/32315 "2026-09-02T16:27:52Z")
Hi all, This is the story of my life being put on hold as it was barely starting. I graduated college and served mandatory military service in 2023. On the first day I fell by night as they were putting us through one … --- ## [Left Temporal Lobe AVM Craniotomy Story](https://avmsurvivors.org/t/left-temporal-lobe-avm-craniotomy-story/27722)
**Author:** [@justgrateful](https://avmsurvivors.org/u/justgrateful)\ **Replies:** 38\ **Last updated:** [August 20, 2026, 1:02pm UTC](https://avmsurvivors.org/t/left-temporal-lobe-avm-craniotomy-story/27722 "2026-08-20T13:02:40Z")
Hi everyone! Jay from Singapore here. 9 weeks ago on 15 Aug 2022, I had my brain AVM removed. I’d love to share my story with this community, and hopefully provide some insights on what I’ve learned from my experience! … --- ## [Temporal Lobe AVM and reflections - my story so far](https://avmsurvivors.org/t/temporal-lobe-avm-and-reflections-my-story-so-far/31824)
**Author:** [@MikeyC](https://avmsurvivors.org/u/MikeyC)\ **Replies:** 12\ **Last updated:** [August 13, 2026, 11:09pm UTC](https://avmsurvivors.org/t/temporal-lobe-avm-and-reflections-my-story-so-far/31824 "2026-08-13T23:09:03Z")
Hello everyone, I honestly started reading through this channel in July 2025 but only now managed to get the courage and calmness to come here. I’ve read through many of your stories and I’m curious to get a bit more th… --- ## [It is a normal life possible?](https://avmsurvivors.org/t/it-is-a-normal-life-possible/31653)
**Author:** [@MariaM1](https://avmsurvivors.org/u/MariaM1)\ **Replies:** 10\ **Last updated:** [August 12, 2026, 5:11am UTC](https://avmsurvivors.org/t/it-is-a-normal-life-possible/31653 "2026-08-12T05:11:49Z")
Hello! My story is long and complicated (aren’t all of ours? :grinning\_face:), so I’ll keep it short. My AVM was discovered in September 2024 and I had three embolizations and one craniotomy in August 2025. I’m from Ro… --- ## [Recovery Isn't a Straight Line: My Unexpected Setback After AVM Surgery](https://avmsurvivors.org/t/recovery-isnt-a-straight-line-my-unexpected-setback-after-avm-surgery/32229)
**Author:** [@wayneavm](https://avmsurvivors.org/u/wayneavm)\ **Replies:** 6\ **Last updated:** [August 4, 2026, 11:02am UTC](https://avmsurvivors.org/t/recovery-isnt-a-straight-line-my-unexpected-setback-after-avm-surgery/32229 "2026-08-04T11:02:55Z")
Update on my journey A gentleman in this community once told me, “A week may be a long time in politics, but it is almost nothing in recovery from a stroke or brain surgery.” At the time, I appreciated the comment, but … --- ## [Big Update: I will be having an embolisation and craniotomy](https://avmsurvivors.org/t/big-update-i-will-be-having-an-embolisation-and-craniotomy/26189)
**Author:** [@corrine](https://avmsurvivors.org/u/corrine)\ **Replies:** 18\ **Last updated:** [July 31, 2026, 2:14pm UTC](https://avmsurvivors.org/t/big-update-i-will-be-having-an-embolisation-and-craniotomy/26189 "2026-07-31T14:14:14Z")
Hey all I plan to document everything properly this time. 2 weeks ago I got huge news. For anyone not familiar with my story, I was diagnosed May 2017 with a high pressure medium-large left occipital lobe AVM. I had an… --- ## [My positive brain AVM story from the UK](https://avmsurvivors.org/t/my-positive-brain-avm-story-from-the-uk/32239)
**Author:** [@Richardstoppolice](https://avmsurvivors.org/u/Richardstoppolice)\ **Replies:** 0\ **Last updated:** [July 29, 2026, 10:32am UTC](https://avmsurvivors.org/t/my-positive-brain-avm-story-from-the-uk/32239 "2026-07-29T10:32:06Z")
In 2020, my life changed in a single moment, the kind of moment many of you here know far too well. I was at work as a police officer, doing what felt like an ordinary shift, when I suddenly collapsed without warning. I … --- ## [Healthy until I wasn't](https://avmsurvivors.org/t/healthy-until-i-wasnt/32163)
**Author:** [@Leja](https://avmsurvivors.org/u/Leja)\ **Replies:** 8\ **Last updated:** [July 6, 2026, 3:53pm UTC](https://avmsurvivors.org/t/healthy-until-i-wasnt/32163 "2026-07-06T15:53:31Z")
(Hi. Im new to this website so I apologise if I made any mistakes while uploading this) I was a physically healthy child my whole life or at least that’s what I thought. At 13 years old I got my first symptom of an AVM … --- ## [Cerebral AVM First Angiogram](https://avmsurvivors.org/t/cerebral-avm-first-angiogram/32015)
**Author:** [@Fisherman](https://avmsurvivors.org/u/Fisherman)\ **Replies:** 17\ **Last updated:** [June 29, 2026, 7:27pm UTC](https://avmsurvivors.org/t/cerebral-avm-first-angiogram/32015 "2026-06-29T19:27:59Z")
Hi, I am new to the group. I started having whooshing sound in my left ear a few months ago so my doctor ordered a CT scan, MRI & MRA of the head/neck. I was referred to a neurosurgeon & had the cerebral angiogram done l… --- ## [Spinal Dural AVF victim - my story so far](https://avmsurvivors.org/t/spinal-dural-avf-victim-my-story-so-far/31772)
**Author:** [@DavidH](https://avmsurvivors.org/u/DavidH)\ **Replies:** 11\ **Last updated:** [June 28, 2026, 5:33am UTC](https://avmsurvivors.org/t/spinal-dural-avf-victim-my-story-so-far/31772 "2026-06-28T05:33:12Z")
Hello everyone Long time reader, first time poster, to start with a massive cliché! My name is David, I live in the North East of England in the UK, and I was diagnosed with a spinal dural avf back in June last year. T… --- ## [Neurological symptoms](https://avmsurvivors.org/t/neurological-symptoms/31968)
**Author:** [@Ree](https://avmsurvivors.org/u/Ree)\ **Replies:** 6\ **Last updated:** [June 21, 2026, 7:18pm UTC](https://avmsurvivors.org/t/neurological-symptoms/31968 "2026-06-21T19:18:50Z")
Hi everyone, I am a 34 yo female. I am 4 months post embolisation for a DAVF cognard 4/ Borden 3 in the superior sagittal sinus. I think I’ve had my fistula for many years as I have been experiencing some pretty severe … --- ## [Diagnosis new...treatment soon: DAVF](https://avmsurvivors.org/t/diagnosis-new-treatment-soon-davf/32042)
**Author:** [@Van](https://avmsurvivors.org/u/Van)\ **Replies:** 11\ **Last updated:** [May 22, 2026, 6:13pm UTC](https://avmsurvivors.org/t/diagnosis-new-treatment-soon-davf/32042 "2026-05-22T18:13:22Z")
After having mild stroke-like symptoms, I had an MRI with contrast which showed a tangle of vessels in my cerebrum with FLAIR. I was scheduled for a angiogram which occured yesterday. The diagnosis was a Borden Level 3 d… --- ## [After 11 years, I'd like to share my story here](https://avmsurvivors.org/t/after-11-years-id-like-to-share-my-story-here/31946)
**Author:** [@catsy](https://avmsurvivors.org/u/catsy)\ **Replies:** 15\ **Last updated:** [April 26, 2026, 1:56pm UTC](https://avmsurvivors.org/t/after-11-years-id-like-to-share-my-story-here/31946 "2026-04-26T13:56:59Z")
Hi everyone, this is my first time on this platform after my avm rupture in 2015. Well, I did chance upon this website back then, but I actively avoided it. I guess I never really got to process what happened as I was 17… --- ## [AVM link to TBI blast injury in the military](https://avmsurvivors.org/t/avm-link-to-tbi-blast-injury-in-the-military/31830)
**Author:** [@richwag](https://avmsurvivors.org/u/richwag)\ **Replies:** 12\ **Last updated:** [April 22, 2026, 1:07am UTC](https://avmsurvivors.org/t/avm-link-to-tbi-blast-injury-in-the-military/31830 "2026-04-22T01:07:01Z")
Hi all - 2013 I had my brain AVM removed and I’m a veteran in the UK. I’m interested in a ITN report in January where they gave a link to AVM and TBI or blast injury in the military, Im just wondering if any of you are a… --- ## [The start and end of my AVM](https://avmsurvivors.org/t/the-start-and-end-of-my-avm/31905)
**Author:** [@ames](https://avmsurvivors.org/u/ames)\ **Replies:** 5\ **Last updated:** [April 20, 2026, 6:12pm UTC](https://avmsurvivors.org/t/the-start-and-end-of-my-avm/31905 "2026-04-20T18:12:02Z")
This is long overdue but hello all my discovery of my AVM was three days after my 25th birthday back in October 2024, waking up to the worst headache of my life. I initially thought I had sprained or broke my back in my … --- ## [From Brain Bleed to Freedom: My AVM Journey](https://avmsurvivors.org/t/from-brain-bleed-to-freedom-my-avm-journey/31804)
**Author:** [@wayneavm](https://avmsurvivors.org/u/wayneavm)\ **Replies:** 16\ **Last updated:** [April 7, 2026, 7:29pm UTC](https://avmsurvivors.org/t/from-brain-bleed-to-freedom-my-avm-journey/31804 "2026-04-07T19:29:17Z")
I was in my mid-thirties, a non-smoker, non-drinker, never did drugs - healthy by every measure I trusted. I had no family history of AVMs, no persistent headaches, nothing to warn me of what was coming. I go to gym 3-4 … --- ## [Spinal Cord Injury | AVM rupture](https://avmsurvivors.org/t/spinal-cord-injury-avm-rupture/31964)
**Author:** [@Monika\_Wright](https://avmsurvivors.org/u/Monika_Wright)\ **Replies:** 2\ **Last updated:** [April 7, 2026, 6:11pm UTC](https://avmsurvivors.org/t/spinal-cord-injury-avm-rupture/31964 "2026-04-07T18:11:11Z")
In 2017, just days before my 18th birthday, my life changed in an instant. What started as a simple hike with a friend quickly turned into something unimaginable. We chose a path that wasn’t safe. She made it across a w… --- ## [One More Month](https://avmsurvivors.org/t/one-more-month/31879)
**Author:** [@Woods](https://avmsurvivors.org/u/Woods)\ **Replies:** 1\ **Last updated:** [March 9, 2026, 6:42pm UTC](https://avmsurvivors.org/t/one-more-month/31879 "2026-03-09T18:42:20Z")
Hey, In one month I head to Boston to get detailed imaging done. The Doctor said that the AVM may be operable since the anatomical characteristics created a “surgical corridor” that he can operate within and not displac… --- ## [Has anyone with a facial/mandibular AVM also been diagnosed with Hemorhagic Colloid Cyst on Foramen of Monroe?](https://avmsurvivors.org/t/has-anyone-with-a-facial-mandibular-avm-also-been-diagnosed-with-hemorhagic-colloid-cyst-on-foramen-of-monroe/31766)
**Author:** [@Steve1](https://avmsurvivors.org/u/Steve1)\ **Replies:** 1\ **Last updated:** [February 22, 2026, 6:21pm UTC](https://avmsurvivors.org/t/has-anyone-with-a-facial-mandibular-avm-also-been-diagnosed-with-hemorhagic-colloid-cyst-on-foramen-of-monroe/31766 "2026-02-22T18:21:29Z")
I fell the other day while moving landed on my left side but held strained to prevent my head from hitting the ground. The next morning I woke up and couldn’t hardly move my neck. The pain on the right side down into m… --- ## [Gigantic Pelvic AVM - to treat or not to treat](https://avmsurvivors.org/t/gigantic-pelvic-avm-to-treat-or-not-to-treat/31780)
**Author:** [@Aleksa](https://avmsurvivors.org/u/Aleksa)\ **Replies:** 7\ **Last updated:** [February 21, 2026, 6:29am UTC](https://avmsurvivors.org/t/gigantic-pelvic-avm-to-treat-or-not-to-treat/31780 "2026-02-21T06:29:57Z")
I’m a 41-year-old male diagnosed with a large pelvic AVM (14 × 9 cm) and partaly spinal, with several aneurysmal dilatations up to about 5–6 cm. I was likely born with it… Around the age of 25, I developed chronic lower… --- ## [Anyone ever get a bubble type bruise that fades after a couple of hours?](https://avmsurvivors.org/t/anyone-ever-get-a-bubble-type-bruise-that-fades-after-a-couple-of-hours/31829)
**Author:** [@JamieC](https://avmsurvivors.org/u/JamieC)\ **Replies:** 2\ **Last updated:** [February 19, 2026, 3:57pm UTC](https://avmsurvivors.org/t/anyone-ever-get-a-bubble-type-bruise-that-fades-after-a-couple-of-hours/31829 "2026-02-19T15:57:41Z")
Picture sort of sucks, sorry. So this has happened a couple times, my foot swells, pain intensifies, ankle will get red and this bubble pops up like a bruise. Eventually, it all goes away. Just wondering if anyone wit… --- ## [Diagnosed with left occipital AVM](https://avmsurvivors.org/t/diagnosed-with-left-occipital-avm/31757)
**Author:** [@1by1](https://avmsurvivors.org/u/1by1)\ **Replies:** 5\ **Last updated:** [February 15, 2026, 9:41am UTC](https://avmsurvivors.org/t/diagnosed-with-left-occipital-avm/31757 "2026-02-15T09:41:40Z")
Hello everyone, just sharing my story here. I’ll continue posting updates whenever I reach a milestone. I’m 27, about a month ago, after getting a brain MRI to check what is causing my aura migraines, the radiologist an… [Next page](https://avmsurvivors.org/tag/stories/1.md?match_all_tags=true&page=1&tags%5B%5D=stories)