# New Member Introductions **URL:** https://avmsurvivors.org/c/welcome/new-member-introductions/20.md [Latest](https://avmsurvivors.org/latest.md) · [Categories](https://avmsurvivors.org/categories.md) · [Tags](https://avmsurvivors.org/tags.md) --- ## [About the New Member Introductions category](https://avmsurvivors.org/t/about-the-new-member-introductions-category/14837)
**Author:** [@ModSupport](https://avmsurvivors.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 12, 2016, 6:07pm UTC](https://avmsurvivors.org/t/about-the-new-member-introductions-category/14837 "2016-08-12T18:07:10Z")
New members, start your experience here. Introduce yourself and share your story about AVM. Let us welcome you. Create your own Topic in this category to tell us your story so far. --- ## [Meeting to Find Answers](https://avmsurvivors.org/t/meeting-to-find-answers/32351)
**Author:** [@Woods](https://avmsurvivors.org/u/Woods)\ **Replies:** 17\ **Last updated:** [October 14, 2026, 8:29pm UTC](https://avmsurvivors.org/t/meeting-to-find-answers/32351 "2026-10-14T20:29:04Z")
Hey Folks, I want to get to the point before I dive into the anecdote that spawned this idea. I was wondering if anybody out there was interested in meeting monthly on zoom to talk about their AVM and their symptoms/liv… --- ## [Effects face in future even Avm was cured permanently.and precautions](https://avmsurvivors.org/t/effects-face-in-future-even-avm-was-cured-permanently-and-precautions/32362)
**Author:** [@Bhavani](https://avmsurvivors.org/u/Bhavani)\ **Replies:** 3\ **Last updated:** [September 20, 2026, 1:22pm UTC](https://avmsurvivors.org/t/effects-face-in-future-even-avm-was-cured-permanently-and-precautions/32362 "2026-09-20T13:22:27Z")
I was 23 now on 8 year ago I got an avm in my right side of my brain that lead to my left body weakness.so I was undergone decompressive carniotomy with using levipil 500 medicine.later the doctors found risky to remove … --- ## [What a lonely condition…](https://avmsurvivors.org/t/what-a-lonely-condition/32146)
**Author:** [@RyanC](https://avmsurvivors.org/u/RyanC)\ **Replies:** 15\ **Last updated:** [September 10, 2026, 9:13pm UTC](https://avmsurvivors.org/t/what-a-lonely-condition/32146 "2026-09-10T21:13:42Z")
Hi all, I was diagnosed with my brain AVM in October 2024. Since then, I’ve had an angiogram and been informed that due to the size and location (4cm, temporal lobe), any form of treatment would be more risky than conser… --- ## [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 … --- ## [Laser turned my pws darker](https://avmsurvivors.org/t/laser-turned-my-pws-darker/31438)
**Author:** [@Terry1](https://avmsurvivors.org/u/Terry1)\ **Replies:** 3\ **Last updated:** [August 23, 2026, 9:02pm UTC](https://avmsurvivors.org/t/laser-turned-my-pws-darker/31438 "2026-08-23T21:02:18Z")
I had laser surgery on a port wine stain on my arm. It went darker purple, and my finger is numb. --- ## [New Here! AVM in the Thalamus](https://avmsurvivors.org/t/new-here-avm-in-the-thalamus/31622)
**Author:** [@Woods](https://avmsurvivors.org/u/Woods)\ **Replies:** 7\ **Last updated:** [August 14, 2026, 1:27pm UTC](https://avmsurvivors.org/t/new-here-avm-in-the-thalamus/31622 "2026-08-14T13:27:32Z")
Hey folks, Just wanted to introduce myself a little. I’m an owner SM Grade 4 Thalamic AVM, I’ve survived 3 minor bleeds (two IVH, one IPH) with minor sensory loss on my right side. This has given me cause to reconsider … --- ## [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… --- ## [Carotid sinus fistula](https://avmsurvivors.org/t/carotid-sinus-fistula/32255)
**Author:** [@JulieA](https://avmsurvivors.org/u/JulieA)\ **Replies:** 11\ **Last updated:** [August 12, 2026, 2:40pm UTC](https://avmsurvivors.org/t/carotid-sinus-fistula/32255 "2026-08-12T14:40:11Z")
Hi I’m new on here has anyone had a carotid sinus fistula? I’ve not spoken to anyone else who has had one? Thanks --- ## [Left frontal lobe avm](https://avmsurvivors.org/t/left-frontal-lobe-avm/32175)
**Author:** [@Christel](https://avmsurvivors.org/u/Christel)\ **Replies:** 4\ **Last updated:** [July 4, 2026, 2:54pm UTC](https://avmsurvivors.org/t/left-frontal-lobe-avm/32175 "2026-07-04T14:54:03Z")
I have had headaches on the left side of my brain. I always blamed my glasses. On may 26 I was at work (vault) and began having that tingling in my arm that i had been having off and on for a couple years. This time it w… --- ## [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… --- ## [Diffused left parietal lobe avm. Can't have surgery, dealing with daily pain](https://avmsurvivors.org/t/diffused-left-parietal-lobe-avm-cant-have-surgery-dealing-with-daily-pain/32026)
**Author:** [@anamiablemedley](https://avmsurvivors.org/u/anamiablemedley)\ **Replies:** 11\ **Last updated:** [May 21, 2026, 10:14pm UTC](https://avmsurvivors.org/t/diffused-left-parietal-lobe-avm-cant-have-surgery-dealing-with-daily-pain/32026 "2026-05-21T22:14:38Z")
Hi everyone this is my first time posting but I’ve been a lurker for a few years now. My name is Tristan I’m from Toronto Canada and being treated at Toronto western hospital. In 2020 when I was 22 i was diagnosed with … --- ## [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… --- ## [Introducing myself](https://avmsurvivors.org/t/introducing-myself/31900)
**Author:** [@Hendo71](https://avmsurvivors.org/u/Hendo71)\ **Replies:** 7\ **Last updated:** [March 26, 2026, 6:41am UTC](https://avmsurvivors.org/t/introducing-myself/31900 "2026-03-26T06:41:25Z")
Hi everyone. For those of you who don’t know me, my AVM ruptured on what I thought would be a normal bike ride to work. With two miles left until I arrived, I felt a horrible “ice cream cold ” brain freeze sensation be… --- ## [Newly discovered AVM](https://avmsurvivors.org/t/newly-discovered-avm/31737)
**Author:** [@Kevin7](https://avmsurvivors.org/u/Kevin7)\ **Replies:** 5\ **Last updated:** [March 25, 2026, 1:00pm UTC](https://avmsurvivors.org/t/newly-discovered-avm/31737 "2026-03-25T13:00:34Z")
So Christmas Eve, I was having a surgery for a urethra stricture and I woke up from anesthesia with an inability to move or feel my right arm. They thought I had a stroke, but actually they called it a focal seizure fro… --- ## [AVM on eloquent area on left side of brain](https://avmsurvivors.org/t/avm-on-eloquent-area-on-left-side-of-brain/31809)
**Author:** [@Jen7](https://avmsurvivors.org/u/Jen7)\ **Replies:** 10\ **Last updated:** [March 24, 2026, 11:17am UTC](https://avmsurvivors.org/t/avm-on-eloquent-area-on-left-side-of-brain/31809 "2026-03-24T11:17:36Z")
Hi all, new here and looking for some input. After an MRI for a back issue, an incidental finding of an AMV was discovered on the left side of my brain. I have been advised to have surgery in the hopes of a full removal… --- ## [My AVM Journey](https://avmsurvivors.org/t/my-avm-journey/31895)
**Author:** [@danielb](https://avmsurvivors.org/u/danielb)\ **Replies:** 6\ **Last updated:** [March 19, 2026, 2:50pm UTC](https://avmsurvivors.org/t/my-avm-journey/31895 "2026-03-19T14:50:14Z")
I am new here, so just wanted to introduce myself and share about my AVM journey so far. My AVM was first discovered by ENT. I was having trouble with tinnitus, ringing in my left ear, and pulsatile tinnitus, dizziness, … --- ## [How to pick neurosurgeon?](https://avmsurvivors.org/t/how-to-pick-neurosurgeon/31748)
**Author:** [@Kevin7](https://avmsurvivors.org/u/Kevin7)\ **Replies:** 4\ **Last updated:** [March 9, 2026, 12:43pm UTC](https://avmsurvivors.org/t/how-to-pick-neurosurgeon/31748 "2026-03-09T12:43:57Z")
I’m literally just going off of who is referred to me by my HMO. sure he seems competent. I have no reason to second-guess the man he did the angiogram but like what criteria would I go by other than just who I think … --- ## [AVM diagnosis hit me like a 10 ton bus... Literally](https://avmsurvivors.org/t/avm-diagnosis-hit-me-like-a-10-ton-bus-literally/31751)
**Author:** [@X\_Josh\_X](https://avmsurvivors.org/u/X_Josh_X)\ **Replies:** 21\ **Last updated:** [January 30, 2026, 6:47am UTC](https://avmsurvivors.org/t/avm-diagnosis-hit-me-like-a-10-ton-bus-literally/31751 "2026-01-30T06:47:25Z")
Hi all, I’m new here, so I thought I’d start by sharing my limited experience with my AVM so far. For starters I’m a 41 year old man from the states, I have 3 beautiful children and an amazing wife. I’ve never been hos… --- ## [New member!](https://avmsurvivors.org/t/new-member/31709)
**Author:** [@Zah](https://avmsurvivors.org/u/Zah)\ **Replies:** 7\ **Last updated:** [January 20, 2026, 5:28pm UTC](https://avmsurvivors.org/t/new-member/31709 "2026-01-20T17:28:08Z")
Hi my name is Zahleen I was born in 2007 and was diagnosed with AVM in the early stages of my life. I’ve been searching since I was a child for a community who understands and can help me learn more about AVM. Throughou… --- ## [Numbness of skull following gamma knife](https://avmsurvivors.org/t/numbness-of-skull-following-gamma-knife/31531)
**Author:** [@LuluSh](https://avmsurvivors.org/u/LuluSh)\ **Replies:** 5\ **Last updated:** [December 2, 2025, 2:21pm UTC](https://avmsurvivors.org/t/numbness-of-skull-following-gamma-knife/31531 "2025-12-02T14:21:01Z")
Hi, i’m new to the group so wanted to say hi, and to say how your network helped me in the run up to my first gamma knife procedure. Thank you to all. I was an amputee from 1 year then at 53 had a haemoraghic stroke, out… --- ## [Please share any advice](https://avmsurvivors.org/t/please-share-any-advice/31493)
**Author:** [@Nana](https://avmsurvivors.org/u/Nana)\ **Replies:** 6\ **Last updated:** [November 17, 2025, 5:47am UTC](https://avmsurvivors.org/t/please-share-any-advice/31493 "2025-11-17T05:47:37Z")
Hello, I have a brain AVM. Two years ago, after a seizure, I had an angiography and then radiosurgery. They couldn’t remove the malformation completely because it’s too large — doing a trepanation would have too many ris… --- ## [DSA 3 month ago](https://avmsurvivors.org/t/dsa-3-month-ago/31530)
**Author:** [@ridwan](https://avmsurvivors.org/u/ridwan)\ **Replies:** 1\ **Last updated:** [November 16, 2025, 2:17pm UTC](https://avmsurvivors.org/t/dsa-3-month-ago/31530 "2025-11-16T14:17:44Z")
Hello I’am Ridwan I’am 32. I started having seizures at the age of 27. After undergoing an MRI and DSA procedure, I was diagnosed with an AVM. Since then, my left leg has felt numb. It has been more than 5 years now, an… --- ## [AVM Rupture Survivor](https://avmsurvivors.org/t/avm-rupture-survivor/31429)
**Author:** [@Karina](https://avmsurvivors.org/u/Karina)\ **Replies:** 14\ **Last updated:** [October 31, 2025, 10:38am UTC](https://avmsurvivors.org/t/avm-rupture-survivor/31429 "2025-10-31T10:38:07Z")
Hi all, I’d like to introduce myself and I am new to the group. I am 7 weeks out from my partial craniotomy surgery due to my ruptured AVM. I underwent angiogram + partial craniotomy + angiogram to ensure it was taken ou… --- ## [Just diagnosed.. awaiting Angiogram](https://avmsurvivors.org/t/just-diagnosed-awaiting-angiogram/30190)
**Author:** [@Stephanie20](https://avmsurvivors.org/u/Stephanie20)\ **Replies:** 22\ **Last updated:** [October 28, 2025, 1:00pm UTC](https://avmsurvivors.org/t/just-diagnosed-awaiting-angiogram/30190 "2025-10-28T13:00:16Z")
Hi all, I’m new to this group. Im 35 from the UK & earlier this year I was diagnosed with an AVM in my knee after years of being misdiagnosed. Whilst i’m still on the 17 week wait list to be seen about this, I discovere… --- ## [New to this group!](https://avmsurvivors.org/t/new-to-this-group/31013)
**Author:** [@Kpsy2008](https://avmsurvivors.org/u/Kpsy2008)\ **Replies:** 13\ **Last updated:** [October 10, 2025, 5:26pm UTC](https://avmsurvivors.org/t/new-to-this-group/31013 "2025-10-10T17:26:30Z")
I had a cerebellar hemorrhage on August 7, 2023. Completely out of the blue, yet extremely humbling and life-changing! Looking to connect with others who had a similar experience. Thank you! --- ## [My 12 year old had a severe AVM episode](https://avmsurvivors.org/t/my-12-year-old-had-a-severe-avm-episode/31293)
**Author:** [@HFC](https://avmsurvivors.org/u/HFC)\ **Replies:** 12\ **Last updated:** [September 17, 2025, 10:21am UTC](https://avmsurvivors.org/t/my-12-year-old-had-a-severe-avm-episode/31293 "2025-09-17T10:21:13Z")
46 days ago my son Coop was at camp in Chattanooga, Tennessee. He did not feel well and he decided to go to the nurses station. His stomach and head hurt. Coops became short of breath and he then asked the nurse for a … --- ## [Hello, new to the community. Does anyone have experience with a spinal avm?](https://avmsurvivors.org/t/hello-new-to-the-community-does-anyone-have-experience-with-a-spinal-avm/31171)
**Author:** [@kat25](https://avmsurvivors.org/u/kat25)\ **Replies:** 8\ **Last updated:** [September 14, 2025, 1:14pm UTC](https://avmsurvivors.org/t/hello-new-to-the-community-does-anyone-have-experience-with-a-spinal-avm/31171 "2025-09-14T13:14:28Z")
Backstory: Hello everyone. My story start back in 2010. I went on my holidays to Ireland when I was nine years old, I had a fall down the stairs landing directly on my back. The next day I woke up with my avm rupturing. … --- ## [Tough situations](https://avmsurvivors.org/t/tough-situations/21491)
**Author:** [@LoganW](https://avmsurvivors.org/u/LoganW)\ **Replies:** 32\ **Last updated:** [September 5, 2025, 4:28pm UTC](https://avmsurvivors.org/t/tough-situations/21491 "2025-09-05T16:28:43Z")
Hi, when I was diagnosed with my AVM, I felt alone. I didn’t think I would ever meet anyone who has my diagnosis. See, my AVM is located in the Basal Ganglia of my brain and the Basal Ganglia is in the center of the brai… [Next page](https://avmsurvivors.org/c/welcome/new-member-introductions/20.md?page=1)