# Support **URL:** https://avmsurvivors.org/c/emotional-support/11.md [Latest](https://avmsurvivors.org/latest.md) · [Categories](https://avmsurvivors.org/categories.md) · [Tags](https://avmsurvivors.org/tags.md) --- ## [Crisis/Help Line](https://avmsurvivors.org/t/crisis-help-line/16552)
**Author:** [@ModSupport](https://avmsurvivors.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [January 4, 2017, 6:19pm UTC](https://avmsurvivors.org/t/crisis-help-line/16552 "2017-01-04T18:19:13Z")
Are you in crisis, or maybe even feeling suicidal? Do need someone to listen and to support you right now? Take a deep breath, and find the helpline in your country: USA Canada United Kingdom Australia Internat… --- ## [About the Support category](https://avmsurvivors.org/t/about-the-support-category/17)
**Author:** [@system](https://avmsurvivors.org/u/system)\ **Replies:** 0\ **Last updated:** [August 11, 2016, 5:18pm UTC](https://avmsurvivors.org/t/about-the-support-category/17 "2016-08-11T17:18:29Z")
Feeling down? Need to rant? This is the place --- ## [Help with diagnosis and choosing a surgeon](https://avmsurvivors.org/t/help-with-diagnosis-and-choosing-a-surgeon/32262)
**Author:** [@sunflower](https://avmsurvivors.org/u/sunflower)\ **Replies:** 2\ **Last updated:** [September 20, 2026, 11:57pm UTC](https://avmsurvivors.org/t/help-with-diagnosis-and-choosing-a-surgeon/32262 "2026-09-20T23:57:59Z")
About 2-3 months ago, through coincidence, a malformation was discovered in my brain. It hasnt bled yet and I am completely symptom free, therefore it has been very hard to grapple with the fact that I have to undergo a … --- ## [Looking for Positive Recovery Stories](https://avmsurvivors.org/t/looking-for-positive-recovery-stories/32364)
**Author:** [@Elika](https://avmsurvivors.org/u/Elika)\ **Replies:** 4\ **Last updated:** [September 18, 2026, 6:46pm UTC](https://avmsurvivors.org/t/looking-for-positive-recovery-stories/32364 "2026-09-18T18:46:52Z")
Hi everyone, I’m 29 years old, and last November I was diagnosed with a dAVF on the left side. My main symptom was pulsatile tinnitus. I had two embolizations about six weeks apart, with my last one in January. I then … --- ## [Parents and AVM](https://avmsurvivors.org/t/parents-and-avm/32200)
**Author:** [@Leja](https://avmsurvivors.org/u/Leja)\ **Replies:** 12\ **Last updated:** [September 17, 2026, 7:03am UTC](https://avmsurvivors.org/t/parents-and-avm/32200 "2026-09-17T07:03:39Z")
This might be weird but my parents claimed to care about my AVM but never showed it. Even when I was in the hospital they would only sit there on their phones and when a nurse would come to give me medicine I would wince… --- ## [Feeling Alone in this](https://avmsurvivors.org/t/feeling-alone-in-this/32258)
**Author:** [@mikefazz](https://avmsurvivors.org/u/mikefazz)\ **Replies:** 5\ **Last updated:** [August 6, 2026, 6:19pm UTC](https://avmsurvivors.org/t/feeling-alone-in-this/32258 "2026-08-06T18:19:16Z")
28 y/o with c4/c5 cervical avm. Partially embolized and additional treatment is needed. I feel like I have no one to talk to about this. My wife’s father had a severe stroke and he is significantly worse than me so I fee… --- ## [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… --- ## [Thanks you for the support](https://avmsurvivors.org/t/thanks-you-for-the-support/32195)
**Author:** [@IngridZ](https://avmsurvivors.org/u/IngridZ)\ **Replies:** 1\ **Last updated:** [July 19, 2026, 8:14pm UTC](https://avmsurvivors.org/t/thanks-you-for-the-support/32195 "2026-07-19T20:14:45Z")
Hello everyone! Good morning. I’m happy to be part of this group; reading the stories is moving, but also very encouraging! Best wishes. Ingrid --- ## [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 … --- ## [AVM recurrence one year after craniotomy](https://avmsurvivors.org/t/avm-recurrence-one-year-after-craniotomy/32009)
**Author:** [@MW11](https://avmsurvivors.org/u/MW11)\ **Replies:** 14\ **Last updated:** [June 17, 2026, 10:32pm UTC](https://avmsurvivors.org/t/avm-recurrence-one-year-after-craniotomy/32009 "2026-06-17T22:32:34Z")
Hello - My son had an AVM rupture Jan 2025 and subsequent craniotomy to remove AVM in Mar 2025. He was 10 at the time of rupture and he’s now 12. We just had our one year post surgery angiogram and unfortunately, it show… --- ## [Declining](https://avmsurvivors.org/t/declining/32104)
**Author:** [@Woodstock](https://avmsurvivors.org/u/Woodstock)\ **Replies:** 6\ **Last updated:** [June 16, 2026, 4:33pm UTC](https://avmsurvivors.org/t/declining/32104 "2026-06-16T16:33:29Z")
I wrote about my son a few times but now things have gotten worse. He was in the hospital again for aspirated pneumonia and because of that he can’t no longer be fed by mouth they had to put a feeding tube in and before… --- ## [My sister passed from her brain stem AVM in 2014](https://avmsurvivors.org/t/my-sister-passed-from-her-brain-stem-avm-in-2014/32056)
**Author:** [@Seagur2629](https://avmsurvivors.org/u/Seagur2629)\ **Replies:** 4\ **Last updated:** [May 14, 2026, 8:23pm UTC](https://avmsurvivors.org/t/my-sister-passed-from-her-brain-stem-avm-in-2014/32056 "2026-05-14T20:23:03Z")
Hi, I don’t know if this is allowed. My sister was 11 and passed in 2014 due to an AVM we didn’t know about. I was 14 at the time. It was a Saturday evening when she got a headache, and that’s all we thought it was. The … --- ## [My 12 year old son has been diagnosed with an AVM](https://avmsurvivors.org/t/my-12-year-old-son-has-been-diagnosed-with-an-avm/31890)
**Author:** [@Tarryn](https://avmsurvivors.org/u/Tarryn)\ **Replies:** 8\ **Last updated:** [March 25, 2026, 1:18pm UTC](https://avmsurvivors.org/t/my-12-year-old-son-has-been-diagnosed-with-an-avm/31890 "2026-03-25T13:18:31Z")
In December last year my son was diagnosed with an unruptured right parietal lobe AVM. It was discovered after he had an MRI for an unusual migraine attack (he has suffered from migraines since he was 7) Since the diagno… --- ## [Teenage daughter with multiple AVMs](https://avmsurvivors.org/t/teenage-daughter-with-multiple-avms/30828)
**Author:** [@Bibi](https://avmsurvivors.org/u/Bibi)\ **Replies:** 17\ **Last updated:** [March 15, 2026, 9:33am UTC](https://avmsurvivors.org/t/teenage-daughter-with-multiple-avms/30828 "2026-03-15T09:33:08Z")
Hi, I am a new member of this undesirable club. My daughter (15) had a hemorrhagic stroke a few months ago. She was airlifted to hospital where multiple AVMs were discovered. Two were treated by embolization. She spent a… --- ## [My son is declining](https://avmsurvivors.org/t/my-son-is-declining/31877)
**Author:** [@Woodstock](https://avmsurvivors.org/u/Woodstock)\ **Replies:** 8\ **Last updated:** [March 12, 2026, 7:22am UTC](https://avmsurvivors.org/t/my-son-is-declining/31877 "2026-03-12T07:22:13Z")
My son has severely declined, he can’t speak he can hardly swallow, he leans to one side and just stares, I’m so sad all the time and I’m afraid of the worst phone call I might get one day, what can I do? --- ## [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… --- ## [Coping with husband’s untreatable AVM](https://avmsurvivors.org/t/coping-with-husband-s-untreatable-avm/31842)
**Author:** [@Tina444](https://avmsurvivors.org/u/Tina444)\ **Replies:** 0\ **Last updated:** [February 24, 2026, 2:52pm UTC](https://avmsurvivors.org/t/coping-with-husband-s-untreatable-avm/31842 "2026-02-24T14:52:23Z")
(topic deleted by author) --- ## [Radiation make it more prone to rupture?](https://avmsurvivors.org/t/radiation-make-it-more-prone-to-rupture/31703)
**Author:** [@Amareea](https://avmsurvivors.org/u/Amareea)\ **Replies:** 10\ **Last updated:** [January 14, 2026, 11:14pm UTC](https://avmsurvivors.org/t/radiation-make-it-more-prone-to-rupture/31703 "2026-01-14T23:14:36Z")
I’ve been reading and documenting myself from the experiences of others…and I’ve come to the conclusion that many AVMS that were found before the rupture, that were treated with Radiation… ended up ruptured after Radiati… --- ## [Memory problems after surgery](https://avmsurvivors.org/t/memory-problems-after-surgery/31684)
**Author:** [@Nana](https://avmsurvivors.org/u/Nana)\ **Replies:** 0\ **Last updated:** [December 29, 2025, 6:51am UTC](https://avmsurvivors.org/t/memory-problems-after-surgery/31684 "2025-12-29T06:51:21Z")
Hello, perhaps it seems obvious, I hadn’t thought about it before, but now I recommend starting neurogymnastics as early as possible; it’s interesting and useful for brain and memory. --- ## [Personality changes](https://avmsurvivors.org/t/personality-changes/31658)
**Author:** [@Gregory62](https://avmsurvivors.org/u/Gregory62)\ **Replies:** 8\ **Last updated:** [December 28, 2025, 3:45pm UTC](https://avmsurvivors.org/t/personality-changes/31658 "2025-12-28T15:45:37Z")
I had radio-surgery three weeks ago. I am noticing personality changes: reckless behavior, memory loss, and an strongly increased sex drive. Has anyone else experienced this? --- ## [Disillusioned, Angry, etc.: Long Rant](https://avmsurvivors.org/t/disillusioned-angry-etc-long-rant/31515)
**Author:** [@Suraya](https://avmsurvivors.org/u/Suraya)\ **Replies:** 15\ **Last updated:** [December 25, 2025, 7:08pm UTC](https://avmsurvivors.org/t/disillusioned-angry-etc-long-rant/31515 "2025-12-25T19:08:27Z")
It’s been a while since I’ve posted a long rant. I’ve tried my usual techniques to ignore the negativity around me as well as the vexation caused by those supposedly are my “support system”. I’ve tried talking to them. I… --- ## [Regret? Coercion?](https://avmsurvivors.org/t/regret-coercion/31628)
**Author:** [@BAAS](https://avmsurvivors.org/u/BAAS)\ **Replies:** 11\ **Last updated:** [December 22, 2025, 9:45pm UTC](https://avmsurvivors.org/t/regret-coercion/31628 "2025-12-22T21:45:44Z")
Anybody out there with an incidental discovery of a brain AVM feel like they were coerced into surgery and struggle with deeply profound regret from the life altering consciousness altering surgery? --- ## [Cerebral Angiogram](https://avmsurvivors.org/t/cerebral-angiogram/31558)
**Author:** [@RmcC](https://avmsurvivors.org/u/RmcC)\ **Replies:** 2\ **Last updated:** [November 28, 2025, 10:14am UTC](https://avmsurvivors.org/t/cerebral-angiogram/31558 "2025-11-28T10:14:17Z")
Have cerebral angiogram tomorrow morning. Heading to hospital today for steroids as I had allergic reaction to iodine dye when I had CT scan. Bit nervous but hoping all goes well :crossed\_fingers: --- ## [Is there a light at the end of this tunnel?](https://avmsurvivors.org/t/is-there-a-light-at-the-end-of-this-tunnel/31517)
**Author:** [@Tamer](https://avmsurvivors.org/u/Tamer)\ **Replies:** 20\ **Last updated:** [November 20, 2025, 3:27am UTC](https://avmsurvivors.org/t/is-there-a-light-at-the-end-of-this-tunnel/31517 "2025-11-20T03:27:52Z")
Hi everyone, My 14-year-old healthy, athletic son had a sudden posterior fossa AVM rupture on October 1st while sleeping — something I had never heard of before. No symptoms, no warning signs. He woke up screaming that… --- ## [Social isolation & unemployment](https://avmsurvivors.org/t/social-isolation-unemployment/31497)
**Author:** [@BAAS](https://avmsurvivors.org/u/BAAS)\ **Replies:** 6\ **Last updated:** [November 12, 2025, 8:52pm UTC](https://avmsurvivors.org/t/social-isolation-unemployment/31497 "2025-11-12T20:52:40Z")
Hello\_friend(s), In July of 2024, I “elected” to have a resection for a Grade 3/4 AVM in my right temporal lobe. Since then, I’ve been navigating a life that feels increasingly bleak. The first 3 months were a rollerco… --- ## [I wish my son had a life](https://avmsurvivors.org/t/i-wish-my-son-had-a-life/31449)
**Author:** [@Woodstock](https://avmsurvivors.org/u/Woodstock)\ **Replies:** 10\ **Last updated:** [November 1, 2025, 5:58pm UTC](https://avmsurvivors.org/t/i-wish-my-son-had-a-life/31449 "2025-11-01T17:58:36Z")
My son has AVM , he will never get better, seems like all the other people in get to have a life . My son can’t walk or feed himself ,his jaw is so weak he can’t chew, all his food has to be pureed, I feel like my son… --- ## [Looking for positive craniotomy stories](https://avmsurvivors.org/t/looking-for-positive-craniotomy-stories/31024)
**Author:** [@Bibi](https://avmsurvivors.org/u/Bibi)\ **Replies:** 22\ **Last updated:** [October 31, 2025, 10:55am UTC](https://avmsurvivors.org/t/looking-for-positive-craniotomy-stories/31024 "2025-10-31T10:55:21Z")
I’ve posted before about my 15 yo daughter having had a bleed this February and 2 embolisations, one at the time of the bleed and another one 3 months later. It was during this last embolisation that it was decided not t… --- ## [Scared for my upcoming surgery](https://avmsurvivors.org/t/scared-for-my-upcoming-surgery/31406)
**Author:** [@Kall6000](https://avmsurvivors.org/u/Kall6000)\ **Replies:** 1\ **Last updated:** [October 11, 2025, 11:50pm UTC](https://avmsurvivors.org/t/scared-for-my-upcoming-surgery/31406 "2025-10-11T23:50:43Z")
I am feeling very nervous for my upcoming surgery. It is scheduled for November 12th. The thought of just going under anesthesia scares me. Knowing that a probe will be guided into my brain over several hours makes me wa… --- ## [3 weeks from Gama on a Grade 1 Brain AVM](https://avmsurvivors.org/t/3-weeks-from-gama-on-a-grade-1-brain-avm/31242)
**Author:** [@mikenj](https://avmsurvivors.org/u/mikenj)\ **Replies:** 13\ **Last updated:** [September 14, 2025, 12:15pm UTC](https://avmsurvivors.org/t/3-weeks-from-gama-on-a-grade-1-brain-avm/31242 "2025-09-14T12:15:35Z")
My daughter is 3 weeks from getting Gama knife for a grade 1 brain AVM in NYC. Anyone have any stories to tell, hopefully encouraging, about what to expect post surgery? Worries about future issues, side affects, ARE, … --- ## [Raising awareness in our communities](https://avmsurvivors.org/t/raising-awareness-in-our-communities/31287)
**Author:** [@Oli](https://avmsurvivors.org/u/Oli)\ **Replies:** 1\ **Last updated:** [August 22, 2025, 3:04pm UTC](https://avmsurvivors.org/t/raising-awareness-in-our-communities/31287 "2025-08-22T15:04:39Z")
Hi everyone, My name is Olivia Montesano and when I was twelve my AVM ruptured at school and I was rushed to the hospital. Since then, I’ve struggled with how to give back to the community that carried me through the ha… [Next page](https://avmsurvivors.org/c/emotional-support/11.md?page=1)