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View the details of this row. http://www.westga.edu/~wmaples/brain14.html
This website contains stories written by survivors and family members/friends of patients.  Several of our members have their stories posted on this site. 
MSN NicknameSPQ_Linda 10/13/2006 
View the details of this row. BOOKS THAT MAY HELP
"When the Air Hits Your Brain" Tales of Neurosurgery by Frank T. Vertosick, MD
  A wonderful book by Eileen Quann called Life and Love after a Stroke.  Details living with someone after brain injury and is very down to earth and honest (not always pretty).  Husband had a aneurysm and is about journey afterwards.  I think you have to order it on the net but is very much worth it.  Gave me a look at what this has been like for my family.  Cindy NH

Living with Brain Injury
Richard C Senelick, MD
Cathy E. Ryan, MA
 
Head Injury and The Family
Arthur E Dell Orto
Paul W Power
 
When a Parent has a Brain Injury
Marilyn Lash, M.S.W.
(Massachusetts Head Injury Association)

"Can you Feel my Tears"
Lauri Merrow
 
Lauri is an emotional survivor whose husband went through the trauma of a brain aneurysm. She captures her  emotions through their ordeal. Recommended for the survivor and  family. Contact Lauri at http://www.laurimerow.com  A portion of the proceeds will benefit the Brain Aneurysm Foundation. Lauri will personmally sign it for you if requested. 
 
 
"I Had Brain Surgery, What's Your Excuse?" by Suzy Becker
 
An easy read, with some very touching moments and some very funny ones too.  Available at Amazon.com or your local library. Kim/NY
MSN NicknameDenrog 8/28/2007 
View the details of this row. Typing in Brain or cerebral aneurysms into Google will bring up over 100 thousand sites to view. Here's a few.
BRAIN ANEURYSM FOUNDATION: Probably the best for explanations to your aneurysm questions in plain simple language. Its where most of us started out! They will tell you everything from what are aneurysms to treatment, recovery & support. Also deals with what to expect and family support. You can find a message board there and members of BAC helping out.
 
BRAIN ANEURYSM RESOURCES:   Another great informative brain aneurysm site that tells you almost everything and includes patient stories and clinical research.     www.brainaneurysm.com
 
NATIONAL INSTITUTEOF NEUROLOGICAL DISORDERS AND STROKE:   Basic information about cerebral aneurysms. Go to the home and click on disorders.
 
AMERICAN STROKE ASSOCIATION:  Information about strokes which can result from aneurysms & ruptures. www.strokeassociation.org
 
The Missy Project: The lady who runs it lost her 12 year old daughter to an aneurysm. She will give you her help & support.  www.missyproject.com            thanks jen! 
 
AMERICAN HEART ASSOCIATION:  Information about abdominal aortic aneurysm, from diagnosis to treatment. www.americanheart.org
 
 
MSN NicknameDenrog 10/13/2006 
View the details of this row. type of programmable vp shunt KiminNY 2/5/2005 
View the details of this row. info on hydrocephalus and shunts KiminNY 2/5/2005 
View the details of this row. Time Out of Mind by Jane Lapotaire
Dear Annie readers!
 
'Time out of mind'
(If I am not myself, then who am I?)
 
by, Jane Lapotaire. First published by Virago 2003.
 
Any one interested in reading this book by Jane Lapotaire(english actor)?
She has written about her experience of cerebral haemorrhage. I first heard of Jane's story on the radio. She read her memoirs brilliantly and gave a candid and moving account.
 
I didn't want to put it down. For those who do have a yen to read this book, I'm sure it will trigger many thoughts and questions; glimpses of our own reminiscences. This book doesn't come with any warnings, however, it might echo some difficult emotions for some. I'd better stop there....
Mel (England - Uk)
 
 
MSN NicknameDenrog 6/26/2005 
View the details of this row. http://www.aspn.org
Pediatric neurosurgery site.
KiminNY 3/9/2006 
View the details of this row. http://www.neurosurgery.org
You can email questions or just read for help in finding a doctor in your area.
KiminNY 3/9/2006 
View the details of this row. http://www.ajnr.org
Information on stenting.
KiminNY 3/14/2006 
View the details of this row. poly cystic kidney disease

PKDCURE.ORG IS THE POLY CYSTIC KIDNEY FOUNDATION SITE. THERE ARE MANY SITES INCLUDING ONES WITH SUPPORT GROUPS

 

What is PKD?
Polycystic Kidney Disease comes in two hereditary forms:

  1. Autosomal dominant (ADPKD), the most common of all life-threatening genetic diseases.
  2. Autosomal recessive (ARPKD), a relatively rare disease that often causes significant mortality in the first month of life.A normal kidney is the size of a human fist. However, with the presence of PKD, cysts develop in both kidneys. There may be just a few cysts or many, and the cysts may range in size from a pinhead to the size of a grapefruit. When many cysts develop, the kidneys can grow to be the size of a football or larger and weigh as much as 38 pounds each.

ADPKD is not just a kidney disorder; other organs can be affected, including the liver, heart and intestines.

Sixty percent to 70 percent of people with ADPKD have cysts in the liver during their lifetime. Liver cysts rarely occur in those under the age of 30 but do form and increase as a person ages. Even though there is an increase in liver size, the amount of functional liver tissue remains fairly constant. Liver cysts occur as often in men as in women. However, women have liver cysts at a younger age than men. Women also have more and larger cysts than men. Women who have been pregnant are more likely to have liver cysts; and the cysts are more numerous and larger in women who have been pregnant compared to women who have not been pregnant.

Mitral valve prolapse (MVP) is a condition where the valve separating the top and the bottom of the left side of the heart does not close properly. Sometimes this causes blood to leak back to the top part of the heart. This is called regurgitation and can be heard during an examination of the heart as a heart murmur. MVP occurs in approximately 26 percent of the people who have ADPKD compared to 2 percent to 3 percent of the general population. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion.

People with ADPKD have about a 5 percent to 10 percent risk of developing intracranial aneurysms. These aneurysms seem to cluster in certain families. That is, if a member of your family has an aneurysm or has ruptured an aneurysm, you may be at a higher risk of having an aneurysm also. People who have ADPKD and a family history of aneurysm should be tested. An aneurysm is an outpouching in a blood vessel. 

Both inguinal and umbilical hernias are more common in those with ADPKD. Inguinal hernias are outpouchings in the area of the groin and umbilical hernias are outpouchings at or near the navel.

Diverticula are outpouchings on the large intestine (colon). It seems that people with ADPKD who are on dialysis or have had a transplant have diverticula more often and more complications from diverticula, including infection, than people who have other kidney diseases.

 

MSN NicknameDenrog 7/21/2006 
View the details of this row. www.brainhelp.co.uk
Addressing the Challenges Faced as a Result of Brain Haemorrhage or Brain
Injury for Suffers Families and Carers.
MSN Nicknamewalterb_2 9/29/2006 
View the details of this row. Brain Aneurysm documentary
 
  I briefly looked around this site and saw no mention of an interesting link I found:
 
 
This organization is trying to raise money to make a documentary on aneurysms.  The production team they hired appears to be very experienced.  Here's an excerpt from the website:
 
"Our production team has collectively 5 Emmy awards and many documentaries aired on both Discovery and PBS."
 
There's a link to donate to the cause towards the bottom of the page.
 
 I think a documentary is a great way to raise awareness and thought others might be interested.  Hopefully, this will be shown on a channel like Discovery or PBS.   
 
Suggested by
Brian
 
MSN NicknameDenrog 10/12/2006 
View the details of this row. brain aneurysm site
Here's an internet site with lots of information on aneurysms. www.brain-aneurysm.com   
  Dawn

suggested by Dawn
MSN NicknameDenrog 10/13/2006 
View the details of this row. VariCare
You might ask your naturopath about VariCare, the vascular supplement. It's made by Enzymatic Therapy and I think it was the reason one of mine didn't rupture when it grew so dramatically the last year before my surgery. I get mine from www.vitacost.com because it's about half of what it is at the naturopath's office! 
 
Submitted by Sarah
 
MSN NicknameDenrog 10/18/2006 
View the details of this row. http://www.abrp.org/ABRPindex.html
This the website for American Board of Rehabilitation Psychology
 
These are therapists who specialize in Rehab Psycholgy.  I'm seeing one of these therapists
and she has been very helpful with my issues.
MSN NicknameMarvPeck1 10/30/2006 
View the details of this row. Video of a coiling embolization
 
A video clip of a coiling!
 
 
 
MSN NicknameDenrog1 1/5/2007 
View the details of this row. missyou.org.uk
Thank you, Kate!
 
 
If anyone interested I think this is a great site for those who have loved and lost.
 
Have a look at Lee's page if you like.
click on search tributes, then enter Lee
 
seasons greetings to all
kate

MSN NicknameDenrog1 1/5/2007 
View the details of this row. Goodsearch.com
thanks Terry
 
I recently heard about GoodSearch.com. This search engine will donate a penny per search to any "approved not for profit" organization. BAF has already been approved but for the 2006 calendar year only 372 searches have been made. If more people used this search engine, it would generate more money for BAF. Just a suggestion.

Merry Christmas to all.
MSN NicknameDenrog1 1/5/2007 
View the details of this row. http://www.brain-surgery.com/
Great site and one we can all understand. You can also email the NS with questions.
KiminNY 2/14/2007 
View the details of this row. www.medicalcenter.osu.edu
Louis P. Caragine, MD, PhD and Bernard Valdez 2004 and 2006 survivor develop and introduce to Ohioans a local brain aneurysm awareness and support group at a grass roots level. Once in the medical center website, search for brain aneurysm support. It will give information about the grass roots efforts and individuals to contact about the support group meetings
MSN Nicknamesurvivor_two_times 8/29/2007 
View the details of this row. www.themissyproject.com/BAD.html
Info on Brain Aneurysms in children, also http://www.aspn.org
MSN NicknameKimmyNY1 9/6/2007 
View the details of this row. http://groups.msn.com/SocialSecurityDisabilityCoalition
Great site to ask and answer questions about Social Security Disability.
MSN NicknameKimmyNY1 9/24/2007 
View the details of this row. Clip Finder
Use this site to find the type of aneurysm clip that you have and make sure it is MRI compatible, and lots of other clip information!
 
MSN NicknameSuzanne-in-Canada 11/3/2007 
View the details of this row. New Findings on Brain Scans
Interesting article in today's paper...http://content.nejm.org/cgi/content/short/357/18/1821

(hope the link works!) Kim
MSN NicknameDenrog1 11/6/2007 
View the details of this row. http://science.howstuffworks.com/brainport.htm   MSN NicknameSPQ_Linda 11/8/2007 
View the details of this row. Onyx treatment
MSN NicknameSuzanne-in-Canada 11/9/2007 
View the details of this row. Brain Surgery Through the Eye
Tells of a fascinating way to treat aneurysms through the eye.
MSN NicknameSuzanne-in-Canada 11/11/2007 
View the details of this row. www.hhs.gov/familyhistory
Online program to keep a history of health information for you and your family members.
MSN NicknameKimmyNY1 3/6/2008 
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