Arteriovenous Malformation & Aneurysm Link Directory
Link directory for information and resources about arteriovenous malformations, aneurysms, and related conditions.
Please refer to the left column for the categories, and if you find that I am lacking in some resources or helpful links, please feel free to submit a link!
Please also report dead links using the contact form!
We hope you find the link directory useful in your journey.
(Below is the directory in its entirety.)
- A Nurse Fulfills A Dream | Social Survivors
Everything in my life was in perfect order. I graduated from UST College of Nursing, a prestigious But we never thought that 2011 would be a very tough year for me and the people who love and care for me. - A Tangle In My Brain
Life is full of choices and in my case, those choice have serious implications. This is the story of how my life unfolds after being diagnosed with an unruptured AVM in my right occipital lobe. - Against the Odds: Brain aneurysm survival | 16×9 Segment
When a brain aneurysm bursts in the brain, only one thing is certain – nothing will ever be the same. 16:9 looks at former firefighter Mike Langevin’s story of survival and the struggle of recovery. - All We Have is Today | Michelle Wulfestieg
For the past decade, Michelle has worked with terminally ill patients on a daily basis. She is a 2-time stroke survivor due to an AVM & have had a near death experience, which strengthened her faith tremendously. She shares stories about faith, pers - Aneurysm & AVM Support
Established in 1995, this website is a place for survivors, their families, and those whom have lost loved ones to aneurysms or AVMs, to exchange experiences, pre- and post aneurysm or AVM diagnosis. - Arterio-Venous Malformation (AVM) Hemorrhage: Craniotomy, Neuronavigation and Surgical Repair (Video)
Sade tells the story of two cerebral hemorrhages that threatened her life at the age of 19. Her neurosurgeon, Dr. Liu, removed the clot, then monitored her progress with MRIs every 2 months to find the cause and prevent a recurrence. - AVM Research & Awareness Foundation: My Story
Story of an AVM survivor, who created the AVM Research & Awareness Foundation after her second SAH, which has been raising money and awareness since 2001. - Brain AVMs: Ticking Timebombs | Ashley Ruskiewicz
Ambition of a stroke survivor who aims to compile a book of stories of AVM survivors. - Brain Line
Preventing, Treating, and Living with Traumatic Brain Injury (TBI) - Happy Graduation, Hiro! | The Butterfly AVM Charity >> Across the Atlantic
AVM Survivor Hiro just reached a very important milestone this week: college graduation. For Hiro, graduating represents a special victory. When Hiro was twenty-one years old and a full-time college student, she had an unexplained grand mal seizure. - Letter to My Wife's Family | Brain Line
A long-time caregiver writes an honest plea for help and support. - Lindsay's Story | The Love for Lindsay Benefit
A Benefit on behalf of a young girl who suffered an AVM rupture which has raised over $50,000 for her care. - Living With A Time Bomb In Your Head – A Mother's Perspective
A personal narrative of a mother whose daughter has AVM. - m@ ram-zzz…'s story
Brain A.V.M. Survivor, Writer and Writing Tutor/Advocate - Me, Myself and Ralph
This is the story of how a 21 year old medical student with a fascination with neurology learns to cope with, and learn from, the impact of a (previously undiagnosed) ruptured AVM and subsequent traumatic brain injury. - OneMoreTi.me: Journey of an AVM Survivor
AVM recovery blog of a graduate student who was diagnosed with Cerebral Arteriovenous Malformation during the summer of her senior year of college, who then went on to have neurosurgery that winter (2011). - Surviving A Brain Injury
A personal story about surviving an Arteriovenous Malformation Brain Injury (AVM) and what happened to myself in the years since the event. - That Day! | Brain Waves
“This is the story of my cerebral aneurysm and the road back!” - That M Word: A Migraine Blog
A blog run by a “migraineur” who gives information, tips and advices, and other useful things for people who suffer from migraines or chronic headaches. - The Good Morning Show
A “reality show” showing the daily lives of stroke survivors. - TheTangledOnes – An AVM Blog
My name is Brittany, but feel free to call me Minty. I am a 20-something diagnosed with AVM. My blog tells my story from the morning I woke up, to the night I came home and suffered a stroke from my AVM rupturing. - This One Is For Us. | Faith, By Fire.
We, the survivors. Brain aneurysms. Those little “bubbles” that form within the arteries/vessels in our brains. Some of ours decided to burst. We then suffered what’s called a subarachnoid hemorrhage. A letter to friends of survivors. - Video: Aneurysm- Life Interrupted | Lee Memorial Health System
At 26 years old Amy Ofenbeck was at the top of her game. New job as a TV news anchor and newly married. She never suspected a weak spot in her brain. - Video: Arteriovenous Malformation
An introduction to Arteriovenous Malformation; video created for a graphic design class by an AVM Survivor - Voices of Survivors | AVM Awareness Project
Collection of visitor-submitted stories about AVM and Aneurysm Survivors, and those who have their loved ones too early due to these vascular malformations, in many different mediums (memoirs, photos, scrapbooks, videos, etc.).
Blogs and Stories
- A Randomized Trial of Unruptured Brain Arteriovenous Malformations | ARUBA
Upon the recommendation of the ARUBA Data and Safety Monitoring Board, the NINDS has stopped enrollment of patient volunteers into the trial. - Against the Odds: Brain aneurysm survival | 16×9 Segment
When a brain aneurysm bursts in the brain, only one thing is certain – nothing will ever be the same. 16:9 looks at former firefighter Mike Langevin’s story of survival and the struggle of recovery. - Bronson Neuroscience team takes on giant aneurysm
What started as a trip to buy new eyeglasses led to one of medicine’s scariest diagnoses for Laurel Rosebush. Her journey took her to Bronson Methodist Hospital in Kalamazoo, where neuroscience specialists using minimally invasive surgery. - Chef Charlie Trotter, famed Chicago chef, had an inoperable brain aneurysm
Chef Trotter had an inoperable brain aneurysm and went to a food conference days before he died even though doctors warned him not to fly - Chloe's story: 14-year-old doesn't let rare brain condition hinder her dreams
Deep behind Chloe Nore’s infectious smile and twinkling brown eyes is a time bomb. A tangle of veins the size of a cue ball are wrapped around an artery adjacent to her central brain stem. - Elderly Couple’s Instagram Photo Reveals Touching, Bittersweet Love Story
83-year-old John Allen takes his 70-year-old girlfriend, Linda Alexander, for coffee six days a week where he teaches her how to read, after bleeding in her brain left her without short term memory, and unable to read or speak. - Growth, not just size, boosts brain aneurysms' risk of bursting
Brain aneurysms of all sizes – even small ones the size of a pea – are up to 12 times more likely to rupture if they are growing, according to a new UCLA study. - Health Success Stories: Woman Survives a Brain Aneurysm, Coma and Stroke
Family’s love and prayers sustain woman through three-year fight. - Interview & Footage: Minimally Invasive Brain Aneurysm Repair | Baptist Health South Florida
Watch a webcast of a minimally invasive brain aneurysm repair from Baptist Health Neuroscience Center in Miami, Florida. - Keller taekwondo students overcome challenges to win big titles
About 100 students take classes at the studio and Nero said all have a special place in her heart. But four of them — Dan Richter, Michelle Sanford, Dan DuBois and Gabby Nero -have faced extra challenges, making them stronger, both physically and emotion - Menopause linked to higher brain aneurysm risk
“Risk factors include smoking, high blood pressure and possibly lower estrogen levels caused by menopause. Two of the largest brain aneurysm trials in the world found most happen in menopausal women.” - Mother's gut feeling saves son's life
A mother’s “gut feeling” saved a 11 year old boy who had an aneurysm and a blocked blood vessel. - Pittsburgh researcher hope to refine understanding of aneurysms
Little is known about why one brain aneurysm might rupture while another won’t — a gap in knowledge that can handicap doctors when recommending treatment. But a research team that includes an Allegheny General Hospital surgeon and a University of Pittsb - Pregnancy May Raise Risk of Cerebral Bleeding in Some Women
Pregnant women are at higher risk of bleeding in the brain from vessel abnormalities known as arteriovenous malformations, a new study indicates. - Preparing Patients for Possible Neuropsychological Consequences After Brain Surgery | Barrow Quarterly
Over the years, many patients have expressed the opinion that some discussion of such possible sequelae before surgery would have been helpful to them. This article documents one patient’s eloquent statement about this issue. - Radio personality Kidd Kraddick dies at 53 from Brain Aneurysm rupture
- Smoking, aneurysm size on CTA predict rupture risk
A study found that aneurysm size and patient smoking status were both significant independent growth predictors. - Summit Pediatrics Doctor survives brain aneurysms and runs a marathon
The 2012 finish was a victory like no other because a few months prior, Delgado wasn’t able to run, let alone walk, lift her right arm or even put a full sentence together. - Superglue surgery saves infant
Team of doctors use glue to stop little girl’s brain bleeding in an operation so rare it may never be done again. - Teen survives ruptured brain aneurysm
Miele Alexander, 13, of Woodside, Queens, recovered from a ruptured brain aneurysm she suffered in June. - Terrible news: Tragic death of young soprano while singing Verdi’s Requiem
The Teatro Colón in Buenos Aires reports the death of soprano Florencia Fabris, who had suffered a brain aneurysm while singing Verdi’s Requiem at the Auditorio Juan Victoria in the province of San Juan. - UNH law student wins $25K Holloway prize for brain aneurysm clip
University of New Hampshire School of Law student with a biomedical engineering background who invented a clip to stop brain aneurysms has won this year’s UNH Paul J. Holloway Prize Innovation-to-Market competition - Video: Aneurysm- Life Interrupted | Lee Memorial Health System
At 26 years old Amy Ofenbeck was at the top of her game. New job as a TV news anchor and newly married. She never suspected a weak spot in her brain. - Walnut Creek: Las Lomas High School wrestler dies suddenly of brain aneurysm
With just two weeks left until school lets out for summer, the Las Lomas High School community has suffered a devastating blow with the loss of 18-year-old junior Amir Khakimov, a fierce competitor and athlete who died Tuesday from bleeding in the brain. - Woman's sporadically numb arm turns out to be warning sign for dangerous malformed blood vessels
Article about a woman whose numbness in the arm was a warning signal of a brain AVM.
>> In The News
- Brain Line
Preventing, Treating, and Living with Traumatic Brain Injury (TBI) - Burgundy for Life | Support Group
Support group for avm and aneurysm survivors and their supporters on Facebook from around the world. - Caregiving Cafe
An online support network to find solutions, information, resources, services, products, doctors, and many other important information in a timely manner for family caregivers. - CaringBridge
A personalized “health social network,” where patients and their supporters can create a space to update family and friends during any health event, leave messages, and create support planners that allow them to coordinate helpful tasks for the patients. - Family & Caregivers | Brain Injury Association
Resource for family, friends, and caregivers, on what to expect when a loved one suffers brain injury, giving advice on how to manage the home, stress, and long term issues, as well as listing useful resources and information. - Family Caregiver Alliance
Programs to improve and support familiy members caring for loved ones with chronic health conditions through programs that provide information, education, services, research, and advocacy. - Letter to My Wife's Family | Brain Line
A long-time caregiver writes an honest plea for help and support. - Lost & Found: What Brain Injury Survivors Want You to Know
Excerpted from Lost & Found: A Survivor’s Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster - The Spoon Theory | But You Don't Look Sick
Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.
Family and Friends
- About Arteriovenous Malformation | The Aneurysm and AVM Foundation
Basic information about the blood vessel anatomy of the brain, overview of AVM, causes, detection, symptoms, references, information about AVMs in children and during pregnancy, and treatment and recovery information. - Arteriovenous Malformation – Cerebral | HealthDesk
Basic information provided by HealthDesk about Cerebral Arteriovenous Malformation, such as causes, incidence, risk factors, symptoms, signs and tests, treatment, and prognosis. - Arteriovenous Malformation – Cerebral | MedlinePlus
MedlinePlus (part of National Institutes of Health and National Library of Medicine)’s webpage about cerebral arteriovenous malformation and its symptoms, causes, treatment, prognosis, and possible complications. - Arteriovenous Malformation – Cerebral | University of Maryland Medical Center
Encyclopedia for Medical Reference published by the University of Maryland Medical Center about Arteriovenous Malformation. - Arteriovenous Malformation & Other Vascular Lesions of the CNS | MedicineNet
Information on what arteriovenous malformation is, symptoms, health consequences, research, sources, and sections about vascular lesions of the Central Nervous System. - Arteriovenous Malformation | Brain & Spine Foundation
Informational page on AVM with diagram, discussions of types of AVMs, and causes. - Arteriovenous Malformation | Cleveland Clinic
Cleveland Clinic’s page on arteriovenous malformation, which goes over treatment, prognosis, research, and resources. Also provides opportunities to ask a health educator questions live, or to call the clinic toll free or chat online with a heart and vasc - Arteriovenous Malformation | Mayfield Clinic
Overview of symptoms, treatments, clinical trials, glossary, diagnosis, and sources about arteriovenous malformation, as well as information about how to calculate lifetime risk of rupture. - Arteriovenous Malformation | Mayo Clinic
Treatment options offered at the Mayo Clinic (one can request appointments in Arizona, Florida, and Minnesota), how to obtain appointments, information about their clinical trials, research, and patient stories. - Arteriovenous Malformation | National Institute of Health
National Institute of Neurological Disorders and Stroke’s page about Arteriovenous Malformation, treatments, prognosis, research, clinical trials, organizations, and additional resources from MedlinePlus. - Arteriovenous Malformations (AVM) | Johns Hopkins Medicine
Information and treatment options for Arteriovenous Malformation. - Arteriovenous Malformations | American Association of Neurological Surgeons
AANS’s page dedicated to AVMs, detailing statistics, symptoms, diagnosis and treatment options. - Arteriovenous Malformations | Boston Children's Hospital
Simplified informational pages on arteriovenous malformations by the Boston Children’s Hospital, with a focus on AVMs in children when discussing tests, treatment and care, and research. - Arteriovenous Malformations | Medscape
Background information, pathophysiology, epidemiology, and treatment information for Arteriovenous Malformation. - Arteriovenous Malformations | National Brain Aneurysm Center
Concise informational page about AVMs, how they are detected, diagnostic testing, and treatment options. - AVM Grading System | The Barrow Neurological Institute
Grading system for AVMs developed by Spetzler and Martin in 1986 to estimate the risk of surgery for each patient. - Brain Aneurysm & AVM Center | Neurovascular Center of Massachusetts General Hospital
Harvard and Massachusetts General Hospital’s collaborative directory for information, support, articles, and more on AVMs. - Brain Aneurysms – Information and Resources for Patients and Physicians
Society of NeuroInterventional Surgery’s (SNIS) comprehensive informational website about brain aneurysms. - Brain Arteriovenous Malformations | Toronto Brain Vascular Malformation Study Group
The Toronto Brain Vascular Malformation Study Group’s informative document on AVMs, types, causes, symptoms, treatments, etc. with the option of obtaining a printable copy of the information. - Brain AVM | Mayo Clinic
Information about brain arteriovenous malformation is divided up into “Basics” (definition, symptoms, causes, risk factors, complications, preparing for your appointment, tests and diagnosis, treatments and drugs), “In-Depth” (complications, treatments an - Brain Vascular Disorders | Toronto Brain Vascular Malformation Study Group
Section of the website that leads to informational pages for Brain Aneurysms, Brain Arteriovenous Malformations, Brain Cavernous Malformations, Dural Arteriovenous Malformations, Vein of Galen Malformations, Carotid Stenosis, and other brain vascular malf - Treatment for Arteriovenous Malformation | Stroke Association
Short explanations on diagnoses and factors that go into deciding upon a treatment, types of treatments (medical therapy, surgery, stereotactic radiosurgery, interventional neuroradiology/endovascular neurosurgery), and overview of what kinds of doctors s - Treatment of Arteriovenous Malformation | The Aneurysm and AVM Foundation
Outlines treatment options (surgery, radiosurgery, embolization, conservative medical management, options in children, treatment during pregnancy) with diagrams as well as information on how to make informed decisions and information on what special consi - Treatment of Vascular Malformations | Toronto Brain Vascular Malformation Study Group
Explains treatment options of various vascular malformations using websites, flash, and videos. - Vein of Galen Malformations | Boston Children's Hospital
Information about a special case of AVM called “Vein of Galen Malformation.” - Video: Arteriovenous Malformation
An introduction to Arteriovenous Malformation; video created for a graphic design class by an AVM Survivor - What is Arteriovenous Malformation? | Stroke Association
Information about avms, their types, ways of diagnoses, and treatments, as well as reference on what kinds of professionals specialize in treating brain AVMs.
Information
- Brainbows
Lindsey Troop began designing hairbows and headbands to benefit TAAF after having surgery to remove an AVM. She’s now raised $3600 and sales are still going strong! - Brainogram
Currently, there is no early detection screening protocol for those patients most at risk for having a brain aneurysm. Brainogram’s goal is to learn more and establish an early detection protocol which can be used worldwide. - Burgundy Butterfly
Hand-crafted by an AVM survivor, all proceeds from these beautiful, beaded AVM awareness and Green Butterfly bracelets go to the Aneurysm and AVM Foundation, and the AVM Survivors Network/Bens Friends Patient Communities. - Burgundy for Life
Online shop for AVM & Aneurysm Awareness, filled with hand-designed products such as awareness stickers and silicon bracelets. - Good Wishes Scarves
Their mission is simple: to provide free of charge, one beautiful It’s a Wrap© or Good Wishes Scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment. - Lion Snaps
“Lion Snaps were created to remind us that others have bigger struggles than we do. Just the simple task of walking can be a daily challenge for some. All money raised will go to The AVM Surviors Network and Ben’s Friends Network.” - No Strain on the Vein Foundation
No Strain on the Vein.com is a community of individuals, family and friends affected by arteriovenous malformations (AVM), aneurysms and cavernous malformation. - Strokes of Hope
Joann found she can paint after her second stroke left her disabled. She sells her paintings and donate a portion to where she got her service dog (canine companions for independence). - The Butterfly AVM Charity
A charity website which aims to raise funds for research, raise awareness about AVM, offer support for families and patients, and offer a comprehensive list of treatment centers and specialists (UK).
Making a Difference
- Crazy Meds: The Good, The Bad, and The Funny
You can learn what’s good, what’s bad, what’s interesting, and what’s plain weird & funny about the medications used to treat common psychiatric and/or neurological conditions. The information on the website is designed to help you work with your doct - Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV)
Online version of DSM-IV covering all mental health disorders for children and adults recognized by the American Psychiatric Association, and lists known causes of these disorders, statistics, and prognosis as well as some research concerning the optimal - Drugs and Supplements | Mayo Clinic
Mayo Clinic’s Drug and Supplement database where visitors can look up prescription and over the counter drug information. - Genetic and Rare Diseases Information Center | GARD
Genetic and Rare Diseases Information Center (GARD) is a collaborative effort of two agencies of the National Institutes of Health to help people find useful information about genetic conditions and rare diseases. The web page enables you to enter a condi - Glossary | BrainAneurysm.com
Terms Related to Cerebral Aneurysms - Glossary | Mayfield Clinic for Brain & Spine
Mayfield Clinic’s glossary about the brain and spine and disorders related to them. - Health Encyclopedia | Baptist Health South Florida
Encyclopedia of hundreds of health conditions. - Library | Baptist Health South Florida
Provides information and interactive references for Diseases & Conditions, Tests & Procedures, Drug reference, Healthy Recipes, Prevention Guidelines, and much more. - Mayo Clinic Health Information
Mayo Clinic’s “Heath Information” section, compiled by more than 3,300 physicians, scientists, and researchers from the clinic with sections such as “Diseases and Conditions,” “Symptoms,” “Drugs and Supplements,” “Tests and Procedures,” “Healthy Lifestyle - Medical Dictionary | The Free Dictionary
Medical Dictionary provided by “The Free Dictionary.” - MedicineNet
Informational news and articles about health and medicine, with multimedia, quizzes, “Symptom Checker,” medical term dictionary, and “Pet Health” in very heavily image-fortified layouts. - Medscape Reference | WebMD
Medical reference database organized by medical specialty, with each supported specialty having its own customized website. Specialty content is evaluated, created, and presented under the guidance of a WebMD program director and a medical professional ad - MedTerms | MedicineNet
Medical dictionary developed by MedicineNet.com to bring easy-to-understand explanations for over 16,000 medical terms. - PubMed | National Institute of Health
Medical reference database with full text articles (over 22 million citations for biomedical literature) by the National Center for Biotechnology Information, National Institute of Health, and U.S. National Library of Medicine - Rare Disease Database | NORD
Database by National Organization for Rare Disorders of over 1,200 rare diseases (of the nearly 7,000 diseases considered rare in the United States). Interested users may download 2 reports every 24 hours from the database. - Symptoms | Mayo Clinic
Explore possible causes for symptoms being experienced. - Vascular Conditions, Tests, Treatments | VascularWeb
Society for Vascular Surgery’s comprehensive database of vascular conditions, tests, and treatments. - VascularWeb | Society for Vascular Surgery
Comprehensive database for vascular conditions, tests, and treatment options provided by the Society for Vascular Surgery. - WebMD
Provides health information, tools for managing health, and support for those seeking up-to-date information. - WebMD Mobile Apps
WebMD App, WebMD Pregnancy App, WebMD Baby App, WebMD Allergy App, WebMD Pain Coach App, WebMD Magazine App, and Medscape App for free downloads.
Medical References
- About Brain Injury | Brain Injury Association
Information about brain injury, outlining diagnosis, treatment, types, and information for family and caregivers, as well as documents personal stories of survivors. - Arteriovenous Malformation & Other Vascular Lesions of the CNS | MedicineNet
Information on what arteriovenous malformation is, symptoms, health consequences, research, sources, and sections about vascular lesions of the Central Nervous System. - Brain & Spine Foundation
Website for people with brain and spine conditions, providing them with information, ability to contact nurses, resources for children, and fundraising options for the cause. - Brain Aneurysm & AVM Center | Neurovascular Center of Massachusetts General Hospital
Harvard and Massachusetts General Hospital’s collaborative directory for information, support, articles, and more on AVMs. - Brain Injuries: The Crashing of the Mind
Information and resources about Traumatic Brain Injury (TBI) by a TBI lawyer with useful facts about brain injury that can be resourceful for anyone learning about brain injury. - Brain Line
Preventing, Treating, and Living with Traumatic Brain Injury (TBI) - Brain Vascular Disorders | Toronto Brain Vascular Malformation Study Group
Section of the website that leads to informational pages for Brain Aneurysms, Brain Arteriovenous Malformations, Brain Cavernous Malformations, Dural Arteriovenous Malformations, Vein of Galen Malformations, Carotid Stenosis, and other brain vascular malf - By Your Side | Traumatic Brain Injury Resource & Support Center
The Traumatic Brain Injury Resource & Support Center, a service of Brain Injury Association of Florida (BIAF), provides one-stop access to TBI information, resources and support services. - Cavernous Malformations (Cavernomas) | Johns Hopkins Medicine
Information about cavernous malformations and treatment options. - Cavernous Malformations | Boston Children's Hospital
Information about the symptoms, diagnosis, causes, and treatment options for Cavernous Malformations in the brain. - Closed Head Injury | Brain and Spinal Cord
Information about Closed Head Injury by an organization that provides resources and support for brain and spinal cord injuries, outlining causes, symptoms, and prognosis. - Crazy Meds: The Good, The Bad, and The Funny
You can learn what’s good, what’s bad, what’s interesting, and what’s plain weird & funny about the medications used to treat common psychiatric and/or neurological conditions. The information on the website is designed to help you work with your doct - Information & Tools for Stroke Survivors to Aid in Going Back to Work | National Stroke Association
Resources provided by Job Accommodation Network (JAN) for both stroke survivors going back to work and their employers. - Is Sound Stressing You Out? | Brain Pages
- Living with Traumatic Brain Injury | The Brain Fairy
Living with Traumatic Brain Injury (TBI) is an information center and a source of inspiration for those with an injured brain, and for their caregivers, families and friends created by a Traumatic Brain Injury survivor. - Lost & Found: What Brain Injury Survivors Want You to Know
Excerpted from Lost & Found: A Survivor’s Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster - Mental Health and Insurance: Commonly Misunderstood Illnesses
There are several mental illnesses that affect and impact a person’s quality of life and misinformation associated with them often makes it difficult for patients to navigate the world of insurance coverage for their illnesses. - National Directory of Brain Injury Services | Brain Injury Association of America
Directory of facilities and community-based services, brain injury specialists, state brain injury association, support groups, professional and legal services, and much more for brain injury support provided by the Brain Injury Association of America. - National Stroke Association
Stroke Is the Fourth Leading Cause of Death in U.S. National Stroke Association’s mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all. - Stroke Fact Sheets | National Stroke Association
Downloadable fact sheets about strokes, prevention, symptoms, risk factors, and rehabilitation and recovery. - Stroke Pictures Slideshow | MedicineNet
Slideshow and visual guide to understanding stroke, reviewed by Charles Patrick Davis, MD, PhD . - Stroke Services | Baptist Health South Florida
Neuroscience Center at Baptist Hospital features a dedicated 35-bed patient care unit and specially trained nurses, neurologists and neurosurgeons to meet the needs of neurological patients. - That M Word: A Migraine Blog
A blog run by a “migraineur” who gives information, tips and advices, and other useful things for people who suffer from migraines or chronic headaches. - The Spoon Theory | But You Don't Look Sick
Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. - Trigger Points: Diagnosis and Management
Trigger points are discrete, focal, hyperirritable spots located in a taut band of skeletal muscle. They produce pain locally and in a referred pattern and often accompany chronic musculoskeletal disorders. - Understanding Brain Injury | Brain Injury 101
What you should know about brain injury and recovery. - Vascular Conditions, Tests, Treatments | VascularWeb
Society for Vascular Surgery’s comprehensive database of vascular conditions, tests, and treatments. - Vascular Malformations and Hemangiomas | Baptist Health South Florida
Information about Vascular malformations and Hemangiomas, as well as how to distinguish between the two conditions, and treatment options available for both conditions. - Vascular Malformations Of The Brain Program | Boston Children's Hospital
Provides information about AVMs, Cavernous Malformations, Vein of Galen Malformations, and Aneurysms, as well as about their Brain Vascular malformation Programs. - VascularWeb | Society for Vascular Surgery
Comprehensive database for vascular conditions, tests, and treatment options provided by the Society for Vascular Surgery. - Vein of Galen Malformations | Boston Children's Hospital
Information about a special case of AVM called “Vein of Galen Malformation.” - WebMD Mobile Apps
WebMD App, WebMD Pregnancy App, WebMD Baby App, WebMD Allergy App, WebMD Pain Coach App, WebMD Magazine App, and Medscape App for free downloads. - What is a Stroke? | Frederick Memorial Hospital CyberKnife Center
Types and symptoms of stroke.
Related Conditions
- Aneurysm & AVM Support
Established in 1995, this website is a place for survivors, their families, and those whom have lost loved ones to aneurysms or AVMs, to exchange experiences, pre- and post aneurysm or AVM diagnosis. - Angiogenesis, Self Help & Diet | The Butterfly AVM Charity
An angiogenesis inhibitor is a substance that inhibits the growth of new blood vessels (angiogenesis). Some angiogenesis inhibitors are a normal part of the body’s control, some are administered as drugs, and some come from diet. - AVM Survivors Network | Ben's Friends Network
An online patient community to connect with others struggling with AVM, with blogs, forums, chats, and ability to have personal pages and member groups to organize meet-ups. - Befrienders Worldwide | United Nations
Befrienders International was an NGO in Special Consultative Status with the Economic and Social Council of the United Nations, created to provide emotional support and reduce suicide worldwide. They provide suicide hotlines, information about depression - Ben's Friends Patient Support Communities
Network of dozens of online support communities for rare diseases, providing social networking communities for anything from Acute Disseminated Encephalomyelitis, Brain Aneurysms, Atrial Septal Defect, Ataxia, Arteriovenous Malformation, Fibromyalgia, Eag - Brain Injury Association of America
National advocacy group to ” advance brain injury prevention, research, treatment and education and to improve the quality of life for all people affected by brain injury,” working to increase access to quality health care and raising awareness for brain - Burgundy for Life | Support Group
Support group for avm and aneurysm survivors and their supporters on Facebook from around the world. - Caregiving Cafe
An online support network to find solutions, information, resources, services, products, doctors, and many other important information in a timely manner for family caregivers. - CaringBridge
A personalized “health social network,” where patients and their supporters can create a space to update family and friends during any health event, leave messages, and create support planners that allow them to coordinate helpful tasks for the patients. - Disability.Gov
Federal government website for comprehensive information on disability programs and services in communities nationwide with links to more than 14,000 resources from all levels of government (federal, state, local, academic, nonprofit), with information on - Good Wishes Scarves
Their mission is simple: to provide free of charge, one beautiful It’s a Wrap© or Good Wishes Scarf to anyone experiencing the thinning or loss of hair as a result of illness or treatment. - Health Resources | Disability.Gov
Link directory for resources related to health by compiled by the national government with ability to search through national, state, and both resources. - HealthyPlace
Mental health site which provides comprehensive information on many psychological disorders and psychiatric medications with support forums, online psychological tests, mental health news, and “mood journals” for users. - Information & Tools for Stroke Survivors to Aid in Going Back to Work | National Stroke Association
Resources provided by Job Accommodation Network (JAN) for both stroke survivors going back to work and their employers. - Invisible Disabilities Association
Resource/news hub and social networking community for Invisible Disabilities, and for people with various Invisible Disabilities to share their stories and experiences. - Living with Traumatic Brain Injury | The Brain Fairy
Living with Traumatic Brain Injury (TBI) is an information center and a source of inspiration for those with an injured brain, and for their caregivers, families and friends created by a Traumatic Brain Injury survivor. - Mid-Atlantic AVM/Aneurysm Support Group
Facebook group for the Mid-Atlantic AVM/Aneurysm Support Group in College Park, Maryland for residents of Mid-Atlantic area. - National Directory of Brain Injury Services | Brain Injury Association of America
Directory of facilities and community-based services, brain injury specialists, state brain injury association, support groups, professional and legal services, and much more for brain injury support provided by the Brain Injury Association of America. - National Organization for Rare Disorders
Federation of voluntary health organizations dedicated to helping people with rare diseases and assisting organizations in the United States that serve them through identification, treatment, and cure of rare disorders through educational programs, advoca - No Strain on the Vein Foundation
No Strain on the Vein.com is a community of individuals, family and friends affected by arteriovenous malformations (AVM), aneurysms and cavernous malformation. - Patient Organizations Database | NORD
Patient organizations database provided by the National Organization for Rare Disorders. - Preparing Patients for Possible Neuropsychological Consequences After Brain Surgery | Barrow Quarterly
Over the years, many patients have expressed the opinion that some discussion of such possible sequelae before surgery would have been helpful to them. This article documents one patient’s eloquent statement about this issue. - Resources and Tools | NORD
Resources and tools for people with rare diseases in categories such as financial and medication assistance, health insurance and Medicare/Medicaid, newborn/genetic testing, clinical trials, and government resources. - SourceAmerica – Employing People With Significant Disabilities
SourceAmerica (formerly NISH), a national nonprofit, is the leading source of job opportunities for a dedicated and highly qualified workforce – people with significant disabilities. - The Aneurysm and AVM Foundation
A charitable nonprofit organization aiming to provide support networks and medical care to those affected with brain aneurysms or vascular malformations which runs research grants, awareness walks, and various projects. - The Brain Aneurysm Foundation
Comprehensive website for the Brain Aneurysm Foundation with sections discussing the symptoms, diagnosis, support groups, resources for families and friends, and events organized by the foundation. - Young AVM/Aneurysm Survivors Group
Support group on Facebook for the younger generation of AVM and Aneurysm survivors to share and talk about problems and concerns unique to their generation.
Support
- A Randomized Trial of Unruptured Brain Arteriovenous Malformations | ARUBA
Upon the recommendation of the ARUBA Data and Safety Monitoring Board, the NINDS has stopped enrollment of patient volunteers into the trial. - American Association of Neurological Surgeons
The American Association of Neurological Surgeons (AANS) is the organization that speaks for all of neurosurgery. The AANS is dedicated to advancing the specialty of neurological surgery in order to promote the highest quality of patient care. - Aneurysms | Boston Children's Hospital
Information about cerebral aneurysms and their treatment options. - Angiogenesis, Self Help & Diet | The Butterfly AVM Charity
An angiogenesis inhibitor is a substance that inhibits the growth of new blood vessels (angiogenesis). Some angiogenesis inhibitors are a normal part of the body’s control, some are administered as drugs, and some come from diet. - Arterio-Venous Malformation (AVM) Hemorrhage: Craniotomy, Neuronavigation and Surgical Repair (Video)
Sade tells the story of two cerebral hemorrhages that threatened her life at the age of 19. Her neurosurgeon, Dr. Liu, removed the clot, then monitored her progress with MRIs every 2 months to find the cause and prevent a recurrence. - Arteriovenous Malformation – Cerebral | University of Maryland Medical Center
Encyclopedia for Medical Reference published by the University of Maryland Medical Center about Arteriovenous Malformation. - Arteriovenous Malformation | Mayo Clinic
Treatment options offered at the Mayo Clinic (one can request appointments in Arizona, Florida, and Minnesota), how to obtain appointments, information about their clinical trials, research, and patient stories. - Arteriovenous Malformations (AVM) | Johns Hopkins Medicine
Information and treatment options for Arteriovenous Malformation. - Arteriovenous Malformations | American Association of Neurological Surgeons
AANS’s page dedicated to AVMs, detailing statistics, symptoms, diagnosis and treatment options. - Arteriovenous Malformations | Boston Children's Hospital
Simplified informational pages on arteriovenous malformations by the Boston Children’s Hospital, with a focus on AVMs in children when discussing tests, treatment and care, and research. - Arteriovenous Malformations | Medscape
Background information, pathophysiology, epidemiology, and treatment information for Arteriovenous Malformation. - Arteriovenous Malformations | National Brain Aneurysm Center
Concise informational page about AVMs, how they are detected, diagnostic testing, and treatment options. - Barrow Neurological Institute
Neurological Institute situated in Phoenix, Arizona with the mission to advance the knowledge and practice of medicine in neuroscience through basic and clinical research, education of medical professionals, and innovation in clinical techniques and techn - Brain Aneurysm & AVM Center | Neurovascular Center of Massachusetts General Hospital
Harvard and Massachusetts General Hospital’s collaborative directory for information, support, articles, and more on AVMs. - Brain Aneurysms – Information and Resources for Patients and Physicians
Society of NeuroInterventional Surgery’s (SNIS) comprehensive informational website about brain aneurysms. - Brain Arteriovenous Malformations | Toronto Brain Vascular Malformation Study Group
The Toronto Brain Vascular Malformation Study Group’s informative document on AVMs, types, causes, symptoms, treatments, etc. with the option of obtaining a printable copy of the information. - Brain AVM | Mayo Clinic
Information about brain arteriovenous malformation is divided up into “Basics” (definition, symptoms, causes, risk factors, complications, preparing for your appointment, tests and diagnosis, treatments and drugs), “In-Depth” (complications, treatments an - Cerebral (Brain) Aneurysms | Johns Hopkins Medicine
Information and treatment options for Brain Aneurysms. - Crazy Meds: The Good, The Bad, and The Funny
You can learn what’s good, what’s bad, what’s interesting, and what’s plain weird & funny about the medications used to treat common psychiatric and/or neurological conditions. The information on the website is designed to help you work with your doct - Find a Vascular Specialist | VascularWeb
VascularWeb’s page to aid in finding a vascular specialist by last name, state, or country. - International RadioSurgery Association
Offers descriptions of various types of surgical procedures that a patient with AVM may go through, including embolization, microsurgery, and radiosurgery. Also offers a PDF file titled “AVM Practice Guideline,” which aims to “develop a consensus-based ra - Interview & Footage: Minimally Invasive Brain Aneurysm Repair | Baptist Health South Florida
Watch a webcast of a minimally invasive brain aneurysm repair from Baptist Health Neuroscience Center in Miami, Florida. - Preparing Patients for Possible Neuropsychological Consequences After Brain Surgery | Barrow Quarterly
Over the years, many patients have expressed the opinion that some discussion of such possible sequelae before surgery would have been helpful to them. This article documents one patient’s eloquent statement about this issue. - Questions to Ask Your Neurosurgeon | Spine Universe
List of questions to ask your neurosurgeon on the first visit. (Change some of the questions around to match your own condition.) - Stroke Services | Baptist Health South Florida
Neuroscience Center at Baptist Hospital features a dedicated 35-bed patient care unit and specially trained nurses, neurologists and neurosurgeons to meet the needs of neurological patients. - Suppression of MMP-9 by doxycycline in brain arteriovenous malformations | Bio Med Central
The primary aim of this study is to demonstrate the feasibility of utilizing doxycycline to suppress matrix metalloproteinase-9 (MMP-9) in brain arteriovenous malformations. - The Toronto Brain Vascular Malformation Study Group
Group dedicated to the study and multidisciplinary care of neurological conditions that affect or arise from blood vessels of the brain. - Treatment for Arteriovenous Malformation | Stroke Association
Short explanations on diagnoses and factors that go into deciding upon a treatment, types of treatments (medical therapy, surgery, stereotactic radiosurgery, interventional neuroradiology/endovascular neurosurgery), and overview of what kinds of doctors s - Treatment of Arteriovenous Malformation | The Aneurysm and AVM Foundation
Outlines treatment options (surgery, radiosurgery, embolization, conservative medical management, options in children, treatment during pregnancy) with diagrams as well as information on how to make informed decisions and information on what special consi - Treatment of Vascular Malformations | Toronto Brain Vascular Malformation Study Group
Explains treatment options of various vascular malformations using websites, flash, and videos. - Treatment Options for Cerebral Aneurysms | American Association of Neurological Surgeons
Various treatment options for cerebral aneurysms detailed by the American Association of Neurological Surgeons - Vascular Conditions, Tests, Treatments | VascularWeb
Society for Vascular Surgery’s comprehensive database of vascular conditions, tests, and treatments. - Vascular Malformations Of The Brain Program | Boston Children's Hospital
Provides information about AVMs, Cavernous Malformations, Vein of Galen Malformations, and Aneurysms, as well as about their Brain Vascular malformation Programs. - VascularWeb | Society for Vascular Surgery
Comprehensive database for vascular conditions, tests, and treatment options provided by the Society for Vascular Surgery. - What is Arteriovenous Malformation? | Stroke Association
Information about avms, their types, ways of diagnoses, and treatments, as well as reference on what kinds of professionals specialize in treating brain AVMs. - What is Cerebral Aneurysm? | Neurovascular & Stroke Institute Physicians Regional
Information about cerebral aneurysms, risk factors, symptoms of both ruptured and unruptured aneurysms, and treatment options.
Treatment
- The Aneurysm and AVM Foundation
A charitable nonprofit organization aiming to provide support networks and medical care to those affected with brain aneurysms or vascular malformations which runs research grants, awareness walks, and various projects. - The Brain Aneurysm Foundation
Comprehensive website for the Brain Aneurysm Foundation with sections discussing the symptoms, diagnosis, support groups, resources for families and friends, and events organized by the foundation. - The Butterfly AVM Charity
A charity website which aims to raise funds for research, raise awareness about AVM, offer support for families and patients, and offer a comprehensive list of treatment centers and specialists (UK).
Organizations
- Brainogram
Currently, there is no early detection screening protocol for those patients most at risk for having a brain aneurysm. Brainogram’s goal is to learn more and establish an early detection protocol which can be used worldwide. - Burgundy for Life
Online shop for AVM & Aneurysm Awareness, filled with hand-designed products such as awareness stickers and silicon bracelets. - The Butterfly AVM Charity
A charity website which aims to raise funds for research, raise awareness about AVM, offer support for families and patients, and offer a comprehensive list of treatment centers and specialists (UK). - Voices of Survivors | AVM Awareness Project
Collection of visitor-submitted stories about AVM and Aneurysm Survivors, and those who have their loved ones too early due to these vascular malformations, in many different mediums (memoirs, photos, scrapbooks, videos, etc.).