|
FACIAL
NEURALGIA RESOURCES
SUPPORT
Disclaimer.
Facial
neuralgias such as trigeminal neuralgia are rare conditions. It is
therefore understandable that few resources are available that focus on
facial neuralgia victims. Since the growth of the Internet, more
support resources have become available to facial neuralgia patients not
only enabling the sharing of up-to-date information but also offering a
chance to reach out to other facial neuralgia patients who understand
the physical and emotional pain of these disorders. By joining
together in a search for answers, by lending our hearts to those who
need our support, we can, with luck, make a positive difference in each
others lives. Listed below are some excellent places to start in finding
mutual support.
Organizations
The best and
foremost resource for TN and other facial neuralgia victims is the
Trigeminal Neuralgia Association (TNA). TNA is a non-profit
organization devoted to helping TN victims and disseminating
information about TN. Although TNA's focus is presently on
trigeminal neuralgia, they also provide support for people with other
facial neuralgia disorders. TNA is growing, with
international branches in Great Britain (see below) and support groups
in Canada, Australia and Israel.
TNA is the place to
go if you have any specific questions about doctors, clinics,
treatments, or support groups. Their website is a collection of
general information about their organization along with excellent
topical papers on TN, articles from their newsletter and listings of
their support groups..
UK
Trigeminal Neuralgia Association
The home of the
United Kingdom branch of the Trigeminal Neuralgia Association welcomes
all TN patients who wish to meet fellow patients and to get
information from medical professionals. Included is important
information on surgical treatments for TN and how to decide which, if
any, is the best for you. A helpful regional map to locate TNA
contacts in the UK is included.
Trigeminal Neuralgia Association of Canada
The Canadian branch of the Trigeminal
Neuralgia Association is a non-profit, charitable organization serving
as an advocate for Trigeminal Neuralgia and other facial pain patients
by providing support, information and encouraging research.
TNA Facial Neuralgia Patient Registry
TNA has established
a National Patient Registry to compile information on the history and
treatments of facial neuralgia disorders. The
TNA survey can be filled out online at:
You can also
request that a copy of the survey be sent by mail. Write,
call, or send email to receive
a questionnaire in the mail. Please include your mailing
address so the survey can be sent to you.
TNA 5TH CONFERENCE
The 5th TNA
conference was held November 2004 in Orlando, Florida
 The TNA
2004
Conference Report and
Videos/DVD's are available for purchase
TNA 3RD CONFERENCE
TNA held its 3rd
international conference in Pittsburgh October 26-29, 2000. Here
are links about the conference and places to order video tapes of
conference sessions.
TNA Summary
TNA
UK Summeray
Debby
Robarge's Notes
Sher A. Cuzzivoglio's Notes
TNA 2ND CONFERENCE
TNA
Local Support Groups
TNA has numerous
local support groups, run by volunteers. A list of groups in the US
are listed below. The TNA support group in Pittsburgh has its own
homepage. Hopefully, more support groups will develop
their own homepages as time goes on.
TNA Support Groups
- Lists contact information for all the Trigeminal Neuralgia Association's Support groups.
TNA
Newsletter
TNA publishes a
periodic newsletter, "TN ALERT" with
excellent articles on TN and related facial neuralgias. Selected
articles are online at the TNA website along with selections from the
TN Alert "Question and Answer"
column. Many of the answers are provided by medical and dental
experts.
TN Alert: The TNA
Newsletter
Questions and Answers from TN Alert
The Internet has
proved to be a godsend for facial neuralgia victims, since it is a
very convenient way for such a small and scattered group to
communicate. This is particularly true for people with facial
neuralgia disorders, who often find it difficult to talk and are
therefore very limited in their communication. Mailing lists, in which
e-mail is circulated among the members, have been found to be a
particularly useful forum. At the moment, there is one mailing list
specifically for people with facial neuralgia disorders.
TN-L
TN-L
Archives
Archives of mail
from TN-L members from 1996 through the present are available through
a searchable web interface at:
TN-L
Archives
These archives have
very useful information the TN-L members have shared over the years
and can be very valuable resource in making connections with people
and finding information on treatments, side-effects, specialists etc.
Reading TN-L Mail with Your Web Browser
An easy way to read
TN-L email without having mail sent to your email address.
Other
Internet resources
Trigeminal Neuralgia.
Compiled by Debbie
Creps, this site focuses on Trigeminal Neuralgia and is well worth
visiting. Debbie takes a friendly, positive and informative
approach in presenting TN information.
Web
Forums
Braintalk:
Trigeminal Neuralgia
The Department of
Neurology at Massachusetts General Hospital sponsors a Neurology Web
Forum which includes a forum specific to Trigeminal Neuralgia.
Chat
Rooms
MGH
Neurology Trigeminal Neuralgia Chat Room
This chat room is
provided as a public service by the Department of Neurology at
Massachusetts General Hospital. Occasionally an MGH Neurologist
or an invited physician from outside MGH will host a chat
session on a particular neurological topic. You must register to
participate.
|
