AVM & Aneurysm & Brain Injury Information

What do you see, when you look at me?
Just another avm, that's labeled "grade 3"
If that's what your thinking, if that's what you see,
Please look again,because that's not all "me".
IM a mother, wife, daughter and IM a nurse too,
I touch people's lives, just like you.
So many problems, this "brain stuff" so new,
I have so many questions, I think you would too!
How would YOU feel if this had happened to you?
You hold up my CAT scan, diagnosis "it's fine"
And then abruptly add "it's all in your mind".
"im busy today, got other patients to see"
Once again, you haven't seen "ME".
When you sit at your desk, write a bill for your fee,
I hope you remember "you still haven't seen ME"
You claim so proudly "I saved your life",
but please ask my husband if Im the same wife.
And please look at my kids when they want to play,
I have to tell them "mom's just not right today"
Once you have done this you will truly see ME,
It isn't so pretty I hope you can see.
The next time you operate I pray that you see,
The person on that table could be you, and not ME
by Kim Rueffer, AVM Surgery Survivor
http://www.westga.edu/~wmaples/rueffer_kim.html

The following are important articles written by surgeons, radiologists, and radiosurgeons throughout the world on the latest developments and procedures for AVM's.
The very latest in Aneurysm Surgery - May 2011
Anesthesia-Related Considerations for Cerebral Arteriovenous Malformations
Decision Analysis for Small, Asymptomatic Intracranial Arteriovenous Malformations
Grading and Surgical Planning for Intracranial Arteriovenous Malformations
Preoperative Silk Suture Embolization of Cerebral and Dural Arteriovenous Malformations

	This page is dedicated to my cyber friends who support our group so willingly. It is dedicated to those patients with a congenital birth defect called an AVM (Arteriovenous Malformation) as well as all of the aneurysm patients throughout the world. Amazingly, there are only approximately 3 out of 10,000 of the population born with an AVM (.03%). I have included hyperlinks on information available on the web including an Aneurysm and AVM Support Page, information on AVM's, Aneurysms, Strokes, Brain Surgery and more.
	Aneurysm and AVM Support Page This site is provided as a public service by the University of West Georgia, Carrollton, GA, 30118, a Division of the University System of Georgia. This has probably been the most important site to aid, assist, and contact those with similar situations. I have met many people throughout the world on this site and thank Bill Maples for coordination of such an important site as this.
	What is an AVM? This describes an Arteriovenous Malformation.
	NINDS Arteriovenous Malformation Information Page A great site on AVM's by NINDS, the nation's leading supporter of biomedical research on disorders of the brain and nervous system.
	Neurovascular Surgery Brain Aneurysm and AVM Center, Neurosurgical Service by Massachusetts General Hospital of Harvard Medical School.
	Everything You Wanted to Know About Brain Surgery, Almost... A preview of the extensiveness of brain surgery and the recuperative process afterwards.
	Brain Vascular Malformation Links AVM/Cavernous Angioma Information by Wake Forest Hospital.
	AVM Treatments by John Hopkins University The decisions related to treatment for the brain AVM depend upon the complete understanding of the competing risks vs. benefits. The important considerations for treatment of the AVM include the size and location within the brain.
	Intracranial Arteriovenous Malformations eMedicine Journal, October 9 2001, Volume 2, Number 10.
	AVM Survivors Network An online support network for AVM survivors and family members.
	Gamma Knife Treatment for AVM's A website by MidMichigan Health detailing the Gamma Knife Treatment.
	The Aneurysm-Clip-Identification-Tool The Aneurysm-Clip-Identification-Tool database.
	The Institute of Neurosciences "The Brain" "The Brain from Top to Bottom!" guided tour.
	Medicimo.com A link to some of the best medical information on the net; including Neurosurgery, Neurology, AVM's, and Aneurysms.
	Easier Brain Surgery Brain surgery is something most people would shudder at. But it's something many people with tumors, cysts or other growths will have to endure. Now a procedure makes brain surgery easier on the patient ... and the doctor.
	The Brain Aneurysm Foundation Providing support and information for Brain Aneurysms.
	The Brain Aneurysm by Vini G. Khurana & Robert F. Spetzler "This book has been expertly written and illustrated for patients with brain aneurysms and their families and for physicians and paramedical professionals interested in learning more about this field."
	RADIOSURGERY and Specialized RADIATION TREATMENTS... The Website for Information on Radiosurgery and Specialized Radiation Treatments.
	Skull Base Institue Patients with neurovascular problems such as trigeminal neuralgia, hemifacial spasm, intractable vertigo and spasmodic torticollis benefit from the Skull Base Institute's innovative endoscopic "keyhole" approach to these disorders.
	Surface & Mid-Line Brain Functions Map Describes the areas of the brain and maps those functions within those area.
	Cerebroweb.com Cerebrovascular Injury Recovery Resources Avm's, Strokes, Neurosurgery, & Head Injury.
	Toronto Brain Vascular Malformation Study Group I am honored that this "Canadian Web Site for Patients with Brain Aneurysms, AVMs, and other Brain Vascular Disorders, and for the Professionals who treat them" has requested to be put on this site.
	Venous Anginoma Support Site The Venous Angioma is classified as a VASCULAR MALFORMATION (Abnormal Blood Vessels).
	Aneurysm Guide Mark Greenburg's Handbook of Neurosurgery (1997 4th Ed).
	National Institute of Neurological Disorders and Stroke NINDS Cerebral Aneurysm Information Page.
	Harvard AVM Information and Support For patients with arteriovenous malformations (AVMs) as well as other neurovascular problems of the brain and spinal cord.
	Neurological Disorders Science-based information on neurological disorders.
	Dr. Diane For more information about Dr. Diane: Concussion, Traumatic Brain Injury, Stroke, Aneurysm, & Brain Tumor-Solutions & resources please check out her website.
	NJ Touch What is Myofascial Release Therapy and how it eases chronic pain.
	What is Fibromyalgia? Several links to information about the disease fibromyalgia.
	Anti-seizure Meds A listing of seizure medications with possible side effects.
	Pfizer's Online Resource for Health Advocacy Associations This site includes information on public policy, research and development, consumer care, Pfizer contacts, and a map to find your local Legislator and their calendars.
	H.O.P.E. for Stroke A web site for stroke survivors and their care givers.
	Stroke Treatment Saves Lives It's the deadliest type of stroke -- one that causes bleeding in the brain. Doctors say there's been no effective treatment for patients -- until now.
	Stroke Treatment Saves Lives -- In-Depth Doctor's Interview In this full-length doctor's interview, Joseph Broderick, M.D., explains a drug to stop the bleeding of a hemorrhagic stroke to save lives and survival without as many side effects.
Several Brain Injury Foundations	Brain Injury Association of America Brain Trauma Foundation
	Rx Listing Information about prescription drugs.
	Clinical Trials The U.S. National Institutes of Health has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies.
	The Caregiver Survival Resources Site Today's Caregiver: For About and By Caregivers The Family Caregiver Alliance National Family Caregivers Association The Well Spouse Foundation Some of our family are the caregivers of aneurysm/AVM patients who need help. There are services available for the frustrations of caregiving, information about caregiving programs around the country, and support from other caregivers. We've all been there, either as needing care or giving care to others and these are great resources for coping with these struggles. Thank you Nancy for forwarding these to our growing family of survivors.
	Traumatic Brain Injury/Brain Trauma Guide While this document is written for those people who have had brain trauma through an accident, the information on this site is valuable. Any patient who undergoes brain surgery suffers brain trauma. This document written by Dr. Glen Johnson, a clinical neuropsychologist from the Neuro-Recovery Head Injury Program in Traverse City, Michigan, details the many phases of the healing process for brain trauma.
	Patient Advocate Organization Protects patient rights, files appeals, and helps with insurance problems.
	Brain Injure Role Model Group Lee Memorial Hospital has a brain injured role model support group. This program is in coordination with the rehabilitation team, nursing staff, doctors, psychological services, and case workers at Lee Memorial Hospital, Fort Myers, Florida. All role models are brain injured survivor volunteers. For more information, contact lynchcl@earthlink.net.
	Best Hospitals for Neurology and Neurosurgery US News Best Hospital Survey for 2005.
	America's Best Hospitals If you're looking for the best in medical care, check out the 12th annual listing of top hospitals, ranked according to 17 separate specialties.
	Doctor's Listing An online search of doctors by state. Note: Some states are not listed and some links may not work.
	Drug Manufacturers' Website Info Patient Resources which lists drug companies pertinent information as well as World SHARE Pharmacy that offers rock-bottom prices on quality pharmaceuticals to anyone.
	Social Security Administration National benefits for people with disabilities.
	The Medicine Program This organization was established by volunteers dedicated to alleviating the plight of an ever increasing number of patients who cannot afford their prescription medication.
	My story. The Surgery Went Well, But....
	Guideposts Magazine True stories of Inspiration and Hope.
	Aneurysm/AVM Chat Room A private chat program offered on this site to discuss related issues regarding AVM's and brain aneurysm's which includes links to other related sites. A formal chat session is set up for every Tuesday evenings at 8:00PM EST. This chat area is also available for survivors wishing to set up their own chat sessions with their survivor friends.
	Newcastle Aneurysm & AVM Support This site has been created with the aim of providing some basic information, links and contacts to Aneurysm and AVM sufferers, survivors and their families in Australia.
	AVM SUPPORT UK This site has been created with the aim of providing some basic information, links and contacts to AVM sufferers, survivors and their families in the UK.
	Australia's AVM Support Site An Aussie Mom created this support site after finding limited information in Australia about AVM's when her two daughters were diagnosed with AVM's (Alison who died from an AVM and Rebecca who is an AVM survivor).
	The Brain Injury Association A complete web site on brain, injury documentation, state offices, legal information, etc.
	Head Injury Head Injury Hotline: Providing Difficult to Find Information about Head Injury Since 1985.
	Brain Injury Society Serving Acquired and Traumatic Brain Injury Society was created to offer a quick response (recovered and recovering) individuals.
	What is Depression? Wing of Madness Community Depression Antidepressant Support
	Assistive Technology for People with Hidden Disabilities This is a publication developed by the North Dakota Interagency Program for Assistive Technology (IPAT) which supports people with disabilities who require assistive technology devices and/or services, addressing problems people experience with hidden disabilities related to memory, attention, confusion, safety, task completion, socialization, and others.
	Angel Flight As our mission statement says, Angel Flight arranges free air transportation on private aircraft in response to health care and other compelling human needs.
	Consumer Health Information Referral service, publications, and toll-free numbers for consumer health information.
	Mayo Health Clinic Access to Mayo Clinic's specialists.
	Medhelp Organization A patient network and health library.
	New England Journal Of Medicine New England Journal of Medicine.
	Supreme Court Cases Learn more about the ADA cases before the Supreme Court.

Some other materials that I found through friends and the library:

The Brain; 8 video tapes by the John D. & Catherine T. MacArthur Foundation Library Classics Project; Produced by WNET/Thirteen, New York, in association with NHK, Japan; Societe' de Radio Television du Quebec; and Kastel Enterprises LTD.

A BOMB IN THE BRAIN, A Heroic Tale Of Science, Surgery, And Survival; a riveting book written by a fellow AVM sufferer who had a massive hemorrhage while on assignment as a journalist in Nicaragua by Steve Fishman (Avon Books, N.Y)

Over My Head - A Doctor's Own Story of Head Injury from the Inside Looking Out; a book by Claudia L. Osborn.

Brain Repair; a book about new discoveries in brain repair by Donald Stein, Simon Brailowsky, and Bruno Will.

Slow Dance; a story of stroke, love, and disability (recommended by neurosurgeons, neurologists, and neurophysiologists) by Bonnie Sherr Klein.

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