BrainSurgery Online Support Group

SUMMARY
The BrainSurgery group (hosted at Yahoo) is an online community with a website which is comprised of almost 300 members and continues to grow. The group is unique in that, although the name is misleading, members are comprised of all different types of brain tumors, with and without surgery; in addition, there are members with aneurysms, multiple sclerosis, and other brain diseases and/or injuries.

This group was founded and is moderated by a meningioma/craniotomy survivor who is also a registered nurse.

The main focus of this group is post-diagnosis education, recovery, rehabilitation, and long term care issues. Whatever the cause of the brain "injury" the outcome is often the same and we find ourselves facing the same issues and concerns. By sharing knowledge and experiences with others, it is the goal of the BrainSurgery group to help this be a less difficult journey for those who must take it.

Through expression of ideas, feelings and opinions, BrainSurgery@Yahoo provides an environment to encourage:
(1) a safe place to communicate concerns about our (or our loved ones') illness
(2) learning ways to improve our ability to help ourselves
(3) opportunities to help others
(4) assistance to families managing the many issues which arise
(5) sharing practical information and resources
(6) assistance to health care providers by improving their understanding of what they can do to help patients and families
(7) development of ways to make the community more aware of brain tumors/related conditions and educational resources

GROUP DEMOGRAPHICS
This community has members from coast to coast and border to border. In addition, we have members from Australia, Phillipines, Germany, Great Britain and Canada, among others.

CONTENT AND FREQUENCY OF MESSAGES
We average approximately 2-3 messages per day, at most. When a concern is raised the group picks up and messages may be more frequent in response to members' needs. Another unique aspect of this group is the website. Utilizing polls and members' posts, in this online community we collect information. We will disseminate this information to physicians, rehabilitation providers, hospital staff, families and patients in the hopes of helping all to better understand us. More importantly, we do this in order to help future patients be more informed about options and methods which may be helpful.

 

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