PLEASE TAKE NOTE. The author of this site has stepped down as leader of this support group and will no longer keep the site updated; however, it will remain on the internet for about six months as a means of referring to past meetings and of supplying a few pertinent websites. This site no longer represents a chapter of the ANA. The logo will be left intact as the author is still a member of the organization.
Efforts are underway to find a replacement leader or co-leaders for the group so that this fine group remains intact. It is a rewarding experience if you feel called upon to help. Until such a person can be found I will remain a contact person for ANA.
This is the page of the Virginia Support group for persons having an interest in acoustic neuromas (more properly known as vestibular schwannomas). Acoustic Neuromas (commonly referred to as ANs) are non-malignant tumors occuring at the brain stem and often protruding into the ear canal. They are currently treated primarily by surgery and radiation.
While there are no set geographic limits this group (was) primarily centered around Richmond, leaving plenty of room for groups to start up in other areas. A new group has been formed in the Tidewater area, led by Helene Gean, Ph. 757-625-4151. We held our first meeting on Sept. 13 in Richmond with 25 people (some of whom were family members) in attendance. Since then we have met at varying locations around the state to draw as many people as possible into our group with the hope that more chapters will be generated within those areas. We have met in Williamsburg, Norfolk, Virginia Beach, and many times in Richmond.
On occasion we have had professionals including surgeons and counselors speak to us. We have maintained a list of others who are willing to speak or help us in other ways.
We did not have a formally stated objective; however, I think most of us are in agreement that a prime purpose is to alleviate the fears of newly diagnosed patients and to provide them with (non-medical) information on what lies ahead of them. Secondarily we can be of help to patients who have had treatment by exchanging information that will make their lives easier. A third goal is just to make some good new friends and to meet in an atmosphere where we can all feel at ease.
Support groups are not for everyone as many patients are sufficiently recovered that they feel no need. That is great. We should, however, never forget the fears we felt when we were first diagnosed. It will truly make you feel good if you can attend a meeting and reassure another.
We do not have a "position" as regards surgery, radiation, or watchful waiting but consider that a matter to be worked out by the patient and his doctors. There are usually valid medical reasons for each of the procedures.
We have made much good use of the computer to maintain lists, keep in touch with ANA in Atlanta, to publish this web page, and to publish our newsletters. Those without access to computers receive notices of meetings in a mailing from Atlanta. Also, our newsletter was mailed to all those in our area who have been in touch with us but do not have computers.
As a note to other group leaders you should be aware that each electronic mailing saves the chapter about 50 cents. We emailed to about 45 people. We have found that creating web pages for our newsletters is a relatively easy way to get them out and it also serves to give ready access to past newsletter mailings.
We, from time to time, posted web site addresses that we feel may be of interest to readers of this page. We had to be pretty arbitrary as there are so many of them. (In our newsletters we spelled out the URLs rather than making them links, as the printed newsletter and electronic newsletter were intended to be identical.)
Seattle Support Group This is the great site of the Seattle Support Group and contains much valuable AN information, covering both surgery and the various types of radiation. All you ever wanted to know and a little extra.
Acoustic Neuroma Association This is the site of the national AN Association with information on how to join, links to much AN information, meeting notices in your area, listserve connections where you can ask questions and get answers, and much more.
List of Hospitals and Doctors. This list, based primarily on e-mails from patients, lists many of the doctors and hospitals actively working with ANs. It is not all-inclusive and is intended to be used in much the same way as you would use the yellow pages.
Site organized and maintained by a team of physicians at The University of California, San Francisco, who treat acoustic neuromas.
Assistive Listening Devices. A site listing where ALDs may be purchased and used in the Richmond area.
This site is a survey page from Johns Hopkins in Baltimore for those interested in exploring radiosurgery as a treatment option.
Richmond, Sept. 13, 1998... Williamsburg, Nov. 14, 1998 ... Virginia Beach, Jan. 23, 1999... Richmond, March 20, 1999... Norfolk, May. 22, 1999 ... Richmond, July 17, 1999 ... (No September meeting due to flood in Norfolk)... Norfolk, Nov. 20, 1999 ... Richmond, Jan. 22, 2000 ... Richmond, March ??, 2000 ... Richmond, May 26, 2000 ... Richmond, July 22, 2000 ... Richmond, Sept. 16, 2000 ... Richmond, Nov. 18, 2000 ... Richmond, Jan. 27, 2001 ... Richmond, Mar. 24, 2001 ... Richmond, May 19, 2001 ... Richmond, Aug. 18, 2001 ... Richmond, Nov. 18, 2001 ... Richmond, Jan. 26, 2002