Surgical Treatments for TN and related facial pain conditions

Updated on 1-10-06While medications provide effective management for many TN patients, medical therapy is often not a permanent solution for this problem. Fortunately for the TN patient there are several neurosurgical procedures that are available if medication no longer provides the desired results.
 The dilemma for the TN patient considering surgery is how to select a surgical procedure since there are several modes of surgical intervention available. Procedures vary from nerve blocks/injections, percutaneous surgery (through the cheek), to open skull surgery and pinpoint radiation. Each procedure has certain advantages and disadvantages - ease of the procedure, effectiveness, long-term results, recurrences, complications, etc. There is no one medical or surgical treatment that is effective in all patients. The choice between a procedure done as a one-day or outpatient (e.g., radiofrequency coagulation or glycerol injection) or one requiring several days in the hospital (microvascular decompression) depends on the patient's preference, physical well-being, previous surgeries, presence of multiple sclerosis, and area of trigeminal nerve involvement (some procedures are particularly indicated when the upper/ophthalmic branch is involved). Undoubtedly, recommendations by the referring physician and by the neurosurgeon play a strong part in the patient's decision-making process. Many physicians are strong proponents of specific procedures. TNA is not an advocate for any single mode of treatment, but serves to provide information on the many treatments available so that TN patients can explore all their options in an informed partnership with their physician.

• Radiofrequency Rhizotomy (RF) - Percutaneous Stereotactic Radiofrequency Rhizotomy (or Electrocoagulation). This outpatient procedure is done under local anesthesia and sedation. A needle is placed through the cheek through which an electrode is inserted to heat the nerve and destroy the pain fibers. 

• Glycerol Rhizotomy - Glycerol Injection or Installation. Using a surgical technique similar to the RF (above) the surgeon injects glycerol into the cavity where the trigeminal ganglion (the central part of the nerve from which the nerve impulses are transmitted) lies. The nerve is bathed with the glycerol to damage the pain fibers.

• Balloon Compression - Percutaneous Trigeminal Ganglion Compression. Also a "through the cheek" procedure, the surgeon first inserts a catheter up to the trigeminal ganglion and then inflates a tiny balloon to compress the nerve and damage the pain fibers.

Percutaneous Balloon Compression

by TNA MAB member, Jeffrey A. Brown, M.D.

• Microvascular Decompression - (MVD). The operation is performed under general anesthesia where a small opening is made in the back of the skull on the side with the pain. The trigeminal nerve is viewed with a microscope and compressing blood vessels are removed and the nerve is padded with a soft pad (typically shredded Teflon).

Skull Base Institute videos of MVD.

• Stereotactic Radiosurgery - Gamma Knife. - This procedure requires no incision. Using highly focused beams of radiation, a lesion (an area of controlled damage) is created in the root of the trigeminal nerve. The nerve isn't burned as in a laser treatment, but the radiation causes the slow formation of a lesion in the nerve over a period of time to interrupt the pain transmission.  Other information links include:

  Gamma Knife's Relief Painless

  Jacksonville Times-Union, 9-20-04

All these procedures show varying degrees of immediate success and periods of long-term relief from pain. Generally, the average overall rate of success is 85% with about 25% of this group having some level of recurrence in 1-5 years. Many patients respond quite well when additional measures are pursued if the initial procedure is not successful or if the pain returns. There is no one procedure that is 100% effective in all cases. Therefore, it is imperative that the TN patient becomes as informed as possible about the surgical options available and understands fully the potential benefits and outcome possibilities of the procedures being considered.

Complementary and Alternative Treatments for TN and related facial pain conditions  Updated on 1-10-06 

        Over the years, TNA has accumulated anecdotal data concerning non-traditional remedies that patients have found helpful in treating their pain. TNA welcomes these reports and always responds. Some reports come from patients who have failed surgeries in their past, some from those who have found medication to be ineffective or bothersome and some from those with a simple desire to find a non-medical or a non-surgical response to their pain.  The volume of this data has increased since TNA expanded its Mission to include conditions related to TN, such as atypical TN and atypical facial pain, where medical and surgical treatments have seemed to be less effective.  Patients with such conditions, like patients with other forms of chronic pain, typically develop increasing interest in non-traditional remedies as they search for relief.

        TNA has always been open to the use of complementary and alternative medicine (CAM).  Sessions at national conferences have been devoted to the subject with speakers on chiropractic, acupuncture, healing hands, hypnosis and nutrition, to name a few.  Editions of our newsletter, the TNAlert, have also addressed these issues.  Currently, we are assembling a task force to establish both guidelines for patients to follow in their use of such therapies and an informed basis for TNA to share with patients the anecdotal data we are collecting.

        In pursuing this effort, TNA believes that one needs to treat the patient, not just the condition.  So, we need to take care of the mind and body as well as our specific facial pain condition.  CAM therapies are legion; some address the mind and spirit, some address the body.  Whichever therapy you intend to use, TNA advocates that you consider the following:

• Little clinical testing with respect to CAM has been performed according to accepted scientific standards;

• Anecdotal evidence suggests that some CAM works for some people but not for others;

• Failures in the use of CAM tend to go under-reported; 

     Also, before resorting to CAM, patients should perform some due diligence:

• Always research the safety and effectiveness of a product or treatment before use;

• Determine the expertise of the provider;

• Establish the cost and the time-frame in which treatment may be expected to be successful;

• Discuss the proposed treatment with your doctor; and

• Ask your local TNA support group or the TNA national office to put you in touch with patients who may have experience of the product or treatment you have selected.

TNA (The Trigeminal Neuralgia Association) was established in Barnegat Light, NJ in 1990 by founding President Claire Patterson and a board of directors comprised of  TN patients and their families.  Prior to its formation, most TN patients suffered in isolation and knew very little about the disorder and its treatment.  TNA’s founding mission was to improve the quality of life of TN patients through programs that empower patients to become knowledgeable about their condition and treatment options, that aid patients with chronic pain, that educate non-specialists on matters of diagnosis and treatment, and that encourage appropriate medical research.  To achieve those goals, TNA established the following objectives: 

• Provide information, support and encouragement to TN patients and their families and reduce the isolation of those affected by the disorder;

• Act as a liaison between patients and qualified medical and dental practitioners, physicians, and treatment centers that diagnose and treat TN;

• Facilitate a network of support groups in regions throughout the country;

• Promote greater visibility, awareness and understanding of the disorder within the medical profession and broader public arena;

• Coordinate a centralized database of TN patients and other information about medical advancements in the treatment of this disorder; and

• Advocate for medical research needed to determine the cause, treatment options, and cure for TN.

In 2002 TNA expanded its mission because more and more TNA patients had neuropathic facial pain conditions other than TN.  For the most part, these were patients diagnosed with atypical TN or atypical facial pain, a wastebasket definition for those presenting neuropathic facial pain without the symptoms of classic TN and for whom standard medical or surgical treatments are, for the most part, ineffective.  Such patients needed answers to help their condition.  They attended support group meetings and national conferences looking for answers but, for the most part, there was no good news to give them.  Many practitioners, even those well versed in the treatment of TN, believed that the pain of such patients “is in their head”.  TNA believed that a better response should be developed for such patients and that TNA was the most appropriate patient-centered organization to address the issue.  Accordingly, after consultation with the MAB, representatives of NIH, researchers and other practitioners, the Board of Directors of TNA adopted a resolution at its March 2002 Board Meeting to expand its Mission Statement to include patients with TN as well as patients with other related facial pain conditions.  This occurred at a time when the mechanisms of neuropathic pain in general were becoming better understood.  

In recent years a dramatic increase in research on the physiology of neuropathic pain has been undertaken and the advent of functional neuroimaging has demonstrated alterations in brain activity associated with neuropathic pain.  TNA believes that it is time for a patient-centered organization to focus on neuropathic facial pain and the plight of those who suffer from it.  This will yield important dividends for those with classic TN as well as those with other related conditions.

The new mission also changes the way in which TNA looks at pain itself.  For the most part, practitioners regard TN as an acute pain syndrome because they believe that through medication or surgery they can treat the pain.  Whether or not this is the correct view of the nature of TN is debatable but by embracing other forms of neuropathic facial pain, for which no adequate medical or surgical response presently exists, TNA has gone squarely into the chronic pain management business.

Key principles in chronic pain management are that to treat chronic pain, one must understand chronic pain; that pain is a lonely and subjective experience; and that those concerned with the plight of chronic pain sufferers must provide understanding and hope.  TNA believes that these principles are poorly understood by those who treat facial pain and by the patients themselves.  Accordingly, these principles must be woven into TNA’s goals and objectives, if it is to meet the challenge of its expanded mission. 

To address the needs prompted by an expanded mission, TNA determined that it must implement the following measures, focusing on increased research and outreach:

1.   Establish a TN and Related Pain Research Fund.  TNA will appoint a Scientific Advisory Committee, composed of key research investigators, to facilitate research in areas of key importance – epidemiology, heredity, ethnic factors, dental implications and utilization of the TNA Patient Registry information.

2.   Establish appropriate classifications for those neuropathic pain conditions said to affect or arise within the trigeminal system.  Currently, conditions not falling within the definition of classic TN are designated as Atypical TN or Atypical Facial Pain.  These wastebasket definitions give rise to two stereotypical responses:  that no medical or surgical option is available to treat such conditions and that such conditions exist solely in the mind of the patient.

3.    Identify new treatments for neuropathic facial pain conditions, once classified.

4.   Recognize the chronic nature of neuropathic facial pain, including classic TN and how that impacts TNA’s constituencies.  If TN is a progressive disease, for those who decline or are unsuitable for surgery, a lifetime of pain is likely.  The same may be true for those with failed surgeries.  Recognizing the chronic nature of neuropathic facial pain suggests the need for evaluation of lifestyle, behavioral pattersn, and of the role of alternative and complementary therapies.  Those who provide medical and surgical treatment for TN need to be sensitized to its chronic nature.

5.   Encourage pharmaceutical companies to participate in a dialogue with TNA, MAB members, NIH and the Comprehensive Pain Research Department at the University of Florida in order to stimulate expanded research in the use of existing medications for treating neuropathic facial pain.

6.   Using similar techniques, stimulate research in the relationship between neuropathic facial pain and conditions susceptible to treatment by those drugs that impact neuropathic facial pain, e.g., epilepsy.

7.   Encourage pharmaceutical companies with off-label use of their products for treating TN and other neuropathic facial pain conditions to seek FDA approval for these indications.  TNA must redouble its efforts to obtain anecdotal evidence of such use by encouraging patients to complete questionnaires for inclusion in TNA’s Patient Registry.

8.   Expand the Medical Advisory Board to include representatives of other disciplines concerned with the treatment of pain.  For example, the role of the anesthesiologist should be evaluated. 

9.   Explore opportunities for cooperation with other non-profits and institutions concerned with the treatment of pain.  This would include the Chronic Pain Association, the Neuropathy Association, the TMJ Association, the Acoustic Neuroma Association and VZV Foundation.

10. Produce new materials to inform patients of new pain classifications, treatment options, the nature of chronic pain and the skills to live a productive and fulfilled life.In January 2002 TNA moved from Barnegat Light, NJ into new headquarters in Gainesville, Florida.  Gainesville is in a university setting, has access to a young, well-trained workforce and is a low cost environment.  This location also allows TNA easy access to the McKnight Brain Institute, the Parker E. Mahan Facial Pain Center and the Comprehensive Pain Research Department, all located at the University of Florida.  TNA can now play an even more active role in promoting research, and has the opportunity to co-sponsor lectures, forums, and conferences with these institutions to further educate the scientific community.  With a professional staff, TNA is prepared to reach the goals set by the Board.

TNA's Board of Directors:  Updated 4-03-06		(Please click on photos for larger view)
	Roger L. Levy, Chairman	TNA Board of Directors At Work For YOU!
	Michael G. Pasternak, Ph.D., President
	Kenneth I. White, C.P.A., Vice President and Treasurer
	Elizabeth Cilker Smith, Secretary Click here for Elizabeth's TN story
	Suzanne Grenell Click here for Suzanne's short bio
	Myron A. Hirsch
	William Pat Marshall, M.D. Click here to read Pat's history with TN
	Everard K. Pinneo
	Shelly Wilson

Previous Board of Directors:

• Gwendolyn M. Asplundh

• Richard "Red" Lawhern, Ph.D.

• Cynthia Ezell

• Brian Cronin

Honorary Board Members:

• Claire Patterson, TNA Founder and President Emeritus

• Norma Zimmer

TNA's Medical Advisory Board          TNA Fellow Announced   Updated on 5-04-06
Comprised of nationally and internationally recognized healthcare professionals in many fields, including neurosurgery, neurology, dentistry and pain management, this Board is committed to promoting better understanding and treatment of TN in the medical community and providing the expertise to address medical issues and patient concerns.

        The following links connect to medical schools, hospitals, and treatment centers where members of the TNA Medical Advisory Board are working or affiliated.  TNA does not endorse or advocate any care provider organization or one method of treatment over another.

Meet the TNA Team:

Jane Boles

Executive Director/CEO

Alana Greca

Director of Patient Support

John Koff

Director of Development

Addie Whitman-Arel

Office Manager

Karin Hyler

Financial Specialist

Cindy Ezell

Special Projects Coordinator

Michelle Seay

Data Entry Specialist

Lynn Forest

Administrative Assistant

Aggie Thomas

Receptionist

Updated on 4-03-06

TNA has assembled a professional team dedicated to serving our members and we would like to take this opportunity to introduce ourselves to you.  Click on the names to the left to meet each of our team members!

TNA

925 Northwest 56th Terrace

Suite C

Gainesville, FL 32605-6402

For a listing of TNA's staff, click here.

If you have a question for the Director of Patient Support, email patientinfo@tna-support.org or phone the direct patient line,  1.800.929.3608 or 352.331.7022 

If you have questions regarding an order you have placed, email orders@tna-support.org.

Support:

Support Groups.  Our support groups (SG’s) are an important source of information, encouragement and support for over 8,000 TN patients and others with related facial pain conditions and their families. They provide support and information that empowers patients to make informed decisions about their treatment of TN and related facial pain conditions. TNA is committed to extend SG’s benefits to underserved communities.

• TNA has 71 support groups operating in the U.S. and Canada as well as 15 “sister” international groups.

• TNA SG’s are predominantly located in communities on the east and west coasts of the U.S. During 2003, we expanded their presence in the heartland, and now have interest in 16 different states and also in 3 countries. This focus will continue.

• In 2006 TNA will implement strategic improvements in the quality of SG leadership through a SG Task Force, which was formed in 2005.  Cindy Ezell, TNA's Special Projects Coordinator, is leading this effort.

• The SGL website (www.tna-support.org/sgl.htm) also will be a focus during 2006. 

Telephone Support Contacts.  Primarily in areas where there is no SG, TNA’s 96 Telephone Support Contacts (TSCs) serve as one-on-one support for facial pain patients, families, friends and medical professionals in their area.  This vital link further strengthens TNA’s ability to provide local information in a timely and accurate fashion.  This group continues to grow and often becomes the training ground for new SGLs.

One-on-One Patient Support.  An essential component of TNA’s services is our Director of Patient Support (this position was formerly titled "Patient Representative"), who is on call answering thousands of phone calls and email messages regarding TN and related facial pain conditions from patients and their families. This direct, personal and in-depth support serves as a life-line for those who have been unable to find the information or relief they need.   

 Alana Greca, TNA’s full-time staff person serving in this role, is both a TN patient and a Registered Nurse and therefore highly knowledgeable and effective in such responses.  In FY 2004-2005, the Patient Support program took over 2,000 telephone calls from patients seeking assistance and support.  She also took and responded to 2,800 patient emails.  New patients added to the TNA database increased 40% during this fiscal year.  These numbers are expected to increase dramatically because:

• TNA’s two 1-800 #s, implemented in January, 2005, continue to bring in high number of callers.  One number is dedicated to the Patient Support program and one is directed to the TNA general office telephone number.  These numbers are listed on the website, are advertised in TNALERTS and are in all printed material.

• The Patient Support Director is also instrumental in developing new patient materials and information for the TNA website, www.endthepain.org.

Educate:

Publications.  TNA publishes a variety of materials to inform patients and family members, health professionals and many others about TN and related facial pain conditions.  The following publications are available to patients, professionals and the public.

• Striking Back! The Trigeminal Neuralgia 

• 
  and Face Pain Handbook.  Published by TNA in 2004 and written by George Weigel and Kenneth F. Casey, M.D. It is written in layman's terms, describes all aspects of TN and facial pain, and provides information and resources for patients, family, and medical professionals. A must-have guide for every facial pain patient!

• Trigeminal Neuralgia, A Primer for Physicians and
   

• Patients.  This brochure introducing TN is distributed to doctors and dentists' offices throughout the country.

•  

• Working In A Very Small Place, The Making of a

• 
  Neurosurgeon.  Published by TNA in 2004 and written by Mark Shelton about Dr. Peter Jannetta, neurosurgeon and TNA Medical Advisory Board Chairman, this book chronicles Jannetta's groundbreaking work in the surgical treatment of TN.

• Inspirational and Relaxation CDs were also added to TNA’s list of items helpful to TN and face pain patients.

• In Development.  Dr. Joanna Zakrzewska, a TNA Medical Advisory Board Member, is writing a book that will answer questions about TN from both the patient and physician perspective.

These publications are available for purchase online.

Professional Outreach.  Because it usually takes so long for most patients to receive a correct diagnosis, there is a critical need to influence the way that healthcare practitioners look at facial pain so that they can detect TN earlier.  These outreach programs are under the direction of the Medical Advisory Board.

Exhibits and Conferences.  TNA continues to draw attention to the pervasive and chronic nature of neuropathic facial pain, benefiting TN sufferers and those with related conditions alike.  In an effort to raise the visibility of TN and other related facial pain conditions among medical and dental professionals, TNA attends and maintains exhibit booths at medical, dental and other health specialty conferences throughout the country.  A booth format is used, staffed by Support Group volunteers and sometimes by paid staff.  TNA exhibited or is exhibiting at the following events:

• American Dental Association Annual Meeting

• American Association of Neurological Surgeons Annual Meeting

• American Academy of Neurology Annual Meeting

• American Academy of Orofacial Pain Annual Meeting

• American Association of Neuroscience Nurses

• American Neurological Association Annual Meeting

• American Pain Society Annual Meeting

• Greater New York Dental Association meeting

• Nation's Capital Dental Meeting

• Physicians Assistants Annual Meeting

• Society for Neuroscience Annual Meeting

• During 2004, TNA will expand participation at such meetings, utilizing volunteers from our support groups wherever possible.  A new exhibition program containing updated content and materials will be developed for use at the national level.  At the same time, TNA representation at regional and statewide conference will be enhanced, through the leadership of SG volunteers.

• Dental Program.  Patients often believe that a dental problem is the source of TN pain.  Indeed, to many dentists, TN mimics dental pain.  TNA will create a new educational program that targets dentists, so that they can detect TN before a patient is permitted to suffer unnecessary and ineffective dental procedures.  Further, TNA’s publications will be made more accessible to reach medical and dental school curriculum directors, giving young dental students the opportunity to learn about TN, its diagnosis and treatment options.

• PA/CRNP Program.  An increasing number of Americans will receive primary care from physician assistants and certified registered nurse practitioners.  As a result, TNA developed a new educational curriculum that targets physicians assistants and certified registered nurse practitioners at their major meetings, to engage them as more effective healthcare providers in the treatment of  TN and head and neck pain.   This curriculum has been drafted under the direction of Dr. Kenneth Casey, current TNA MAB Member.

Advocate:

• Newsletter.  The TNAlert is distributed to over 30,000 readers three times a year.  It is an important source of scientific and medical information as well as news about TNA, patient support groups, and resources.  The distribution will continue to expand to new patients and professionals.  new columns such as patient success stories and enhanced content will be delivered.

• National Conference.  Held every two years, this conference provides a comprehensive educational program responding to the diverse needs of patients with TN and related facial pain conditions, their families and professionals involved in their care.  It is a powerful tool to inform and TNA's most visible program. 

  The National Conference is unique; it brings patients and professionals together face-to-face, to learn from each other and share information about current trends in and new methods of diagnosis and treatment.  With this highly unusual format, doctors, dentists and other health professionals interact with patients and SGLs in sessions where the role of the patient is to question, based upon his or her own experience.  Such occurrences are unavailable to patients in a clinical setting. 

  • The TNA 5th National Conference was held in Orlando, November 11-14, 2004. This event was co-hosted by the University of Florida’s Colleges of Medicine and Dentistry respectively and Shands Hospital. This educational experience was second to none for our patients and health professionals. Over 400 patients, family members and health professionals participated. The National Conference is unique; it brings patients and professionals together face-to-face, to learn from each other and share information about current trends in and new methods of diagnosis and treatment.  With this highly unusual format, doctors, dentists and other health professionals interact with patients and support group leaders in sessions where the role of the patient is to question, based upon his or her own experience.  Such occurrences are unavailable to patients in a clinical setting. 

  • TNA’s 6th National Conference will be held in Portland Oregon, September 14-16, 2006.  This event is co-hosted by Oregon Health and Science University.  Over 350 patients, family members and health professionals are expected to participate in this unique initiative.

    • The interactive format is to include far more diverse educational content. Concurrent educational sessions were also offered for the first time.

    • A targeted Leadership Development Program for current SG Leaders will also precede the Conference. This initiative includes education on ways to enhance our SGL volunteer leadership core, through updates on educational outreach initiatives planned by TNA as well as direct skill training on crisis intervention services and other areas.

    • TNA will also offer Continuing Education credits for health professionals.  This important program is now included in Regional Conferences and helps fulfill TNA’s mission to raise awareness of TN and neuropathic facial pain among health professionals.

    • Please click here for information about TNA's  5th and 6th National Conferences.

• Regional Conferences.   

  Following the success and format of National Conferences, TNA now sponsors regional conferences with the aid of local Support Groups.  The first regional Conference was held in Texas in the summer of 2003.  Co-sponsored by the Texas support groups and the UT Southwestern Medical School, it attracted several hundred participants, including over 250 patients, as well as physicians and dentists from the local community.

  These conferences take the information to the people who are unable to attend the bi-annual TNA National Conferences.  Based on the successful model developed in Dallas, TNA hosted 4 Regional Patient Workshops in 2005 and will host 1 Regional Conference in 2006, including:

  • New York City

  • Casper, WY  

  • San Frrancisco, CA

  • Philadelphia, PA

  • Dallas, TX (2006)

   

  Based on this model, the concept continues to grow so that people in other regions throughout the country have an opportunity to participate in a TNA conference, when no TNA National Conference will be offered.  Look for information about upcoming Regional Conferences on this site.

• Sponsors and Supporters.  Designed for use by TNA sponsors and supporters, specialized logos are available for letterhead and other promotional material in conjunction with the words “Proud Sponsor/Supporter of TNA”.  If you are interested in becoming a sponsor or supporter and using one of these logos, please contact Jane Boles, TNA Executive Director

Research:   

TNA Fellow Announced

Research Project Opportunity:

Research study of familial trigeminal neuralgia

TNA Announces The International Trigeminal Neuropathic Pain Research Project

• Patient Registry. 

  The TNA Patient Registry is the only database collecting comprehensive information about patients with TN and related facial pain conditions, their treatments, successes and failures. TNA has gathered information from over 12,000 TN patients.  It is expected to double in size in the next year.  TNA recently moved the PR from the University of Arkansas to TNA headquarters in Gainesville. TNA continues to examine opportunities for research with the existing database of survey information, and ways to make the PR accessible to researchers interested in using its data.

• Funded Research. 

  During the past few years, TNA has identified as an essential priority a stronger role for advocating for more research into the causes of and more effective treatment for TN and related facial pain conditions. As the result of a scientific forum held in 2000 which was co-sponsored by TNA and the National Institutes of Health (NIH), in September, 2003 NIH made $1.8 million available over 3 years for research into the causes of and effective treatment for persistent craniofacial pain transmitted by the trigeminal nerve.  To further stimulate research into the causes of orofacial pain, an additional $3.7 million over the next 2 years was made available in November.  It’s hoped that these funding initiatives will shed new light on the causes of TN and other related facial pain. 

• TNA continues to monitor the progress of these initiatives, and advocate for continued resources from the Federal government and private sector. 

• TNA has a formal structure to help guide TNA’s efforts on TN and related facial pain research. The Scientific Advisory Committee, as part of the Medical Advisory Board, was initiated to consider current gaps in research knowledge on TN and related facial pain, and develop strategies for addressing them.

   

NEW FUNDING AVAILABLE!

Program Announcement

• Neurobiology of Persistent Pain Mediated by the

•  

• Trigeminal Nerve - On September 16, 2003, The National Institutes of Health have announced the availability of  $1.8 million over the next three years, targeted for research into the causes of and effective treatment for persistent craniofacial/deep tissue pain transmitted by the trigeminal trigeminal nerve.  The purpose of this initiative is to foster research that addresses the pain mechanism, chronic pain conditions, and responsiveness to pain therapy.  This is outstanding news, and we are hopeful it will yield promising results which can be used to help all of us! Now, scientists have an  opportunity to contribute to this research and expand what we know about TN and related facial pain. It could yield significant benefits, and influence treatment in the future. Please join us in this effort, and build hope for the future. Together, we will end the pain!  Grant Application Receipt Dates

• Mechanisms of Orofacial Pain: 

• Anatomy, Genomics and Proteomics - On November 19th, 2003, NIH released another announcement – Request for Application #RFA-DE-05-004.  This RFA invites applications to stimulate interdisciplinary research into the molecular mechanisms underlying orofacial pain.  Approximately $3.0 million will be directed over the next two years to fund 8-10 new grants with NIDCR and $700,000 to fund two new grants with NINDS in 2005.  LETTER OF INTENT RECEIPT DATE:  April 19, 2004; APPLICATION RECEIPT DATE:  May 14, 2004

New Initiatives:

• Case Management  Protocols and Pain

•  

• Classification.  To ensure more successful outcomes and that more patients receive  access to appropriate diagnosis and treatment, practice guidelines will be developed.  These will form the foundation for case management protocols to be adopted by hospitals, physicians, managed care companies and third party payers.   Fundamental to this process will be adoption of a  uniform classification system to more clearly identify the narrow differentiation between related facial pain conditions.

• National Physicians Registry.   Like the TNA Patient Registry, this database will include information gathered from physicians and health professionals about medical and surgical treatments, success rates, follow-up procedures, etc. 

• Health Profession Newsletter.  This service will send monthly update emails to interested health professionals about the latest developments in TN and related facial pain condition treatment information, research and publications.

Find Support In Your Area

TNA Support Groups have been established in many cities in the U.S., Canada, and internationally.   New groups and network patient contacts are constantly being developed, so if you don't see a contact in your area or if you would be interested in becoming involved, please contact Jane Boles, TNA Executive Director.  Note -- When contacting TNA by email, please include your surface mail address and phone number in your email.  Your information will be held in confidence.  TNA does not share its mailing lists.

Support Group Newsletters

Submissions received from across

the country and around the world. 

These files are .PDF (Portable Document Format).  Using Adobe Acrobat Reader, this allows all computers to read documents from different programs.  Adobe Acrobat Reader can be easily downloaded to your computer from the internet.  If you have any difficulty retrieving these documents, please contact our webmaster. 

To submit your Support Group's newsletter for review and inclusion on this website, please email your newsletter as an attachment to newsletters@tna-support.org.

Please Note:  These newsletters are not intended to diagnose, prescribe, or to replace the service of a physician.  They offer member anecdotal experiences and the opinions of presenters and authors.  The opinions expressed do not necessarily represent the opinions of TNA, it's Board of Directors or Medical Advisory Board.

Updated 5-16-06

	2003, November 2003, February
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	2005, January
	2005, January 2005, Spring
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TNA Support Groups at Work

to Help TN and Facial Pain Patients

Support Groups Making a Difference

Updated 5-16-06

TNA Pacific Northwest Support Group Newsletter

TNA Twin Cities Support Group Newsletter

TNA Tennessee Support Group Newsletter

Australia TNA Support Group Newsletter

TNA Knoxville, TN Support Group Newsletter

TNA Texas Support Group Newsletter

Northeast Florida TNA Support Group Newsletter - Tic  Talk

Brevard County (FL) Trigeminal Neuralgia Association Support Group

Colorado TNA Support Group Participates in State Dental Conference

From Tucson TNA Support Group Leader, Charles Panian

North Central Texas TNA Support Group Newsletter

TNA Australia Newsletter

TNA Support Group Triad of North Carolina launches website

TNA national visits Waco, TX TNA Support Group

Seattle Washington TNA Support Group News

North Central Texas September newsletter

Calendar for September Face-Off on Face Pain Activities

Sufferers of face pain join together
area residents form support group for trigeminal neuralgia

Seattle, WA Support Group News

Northeast Florida TNA Support Group Newsletter

 May/June Newsletter of the Pacific Northwest TNA Support Group

Texas Support Group Meeting Schedule

Contra Costa Times, California

Knoxville TRIGEMINAL NEURALGIA LUNCHEON

North Carolina Support Group Meeting Announcement

Nerve Center Newsletter, March/April, 2005

Australia May, 2005 Newsletter

Seattle Washington Support Group News - Saturday, May 14, 2005

 San Diego TNA Support Group

Colorado Support Group

United Kingdom 2005, Spring Newsletter

Twin Cities Support Group News

Central Texas TNA Support Group News

Seattle Washington Support Group News - Saturday, March 26, 2005

Australia Support Group April 2005 Newsletter

Kansas City Support Group February 20th Meeting

Orange County Kick Off Photos

Australia Support Group March 2005 Newsletter

Shirley Luscinski, Middle Tennessee Support Group Leader

Article -TN:  The Hidden Hurt

John Porter, TNA North San Francisco Bay  Support Group Leader - His Personal Story

MELBOURNE   SUPPORT   GROUP   MEETING

Kick Off Luncheon Seminar Held in Orange County California

Seattle Washington Support Group News - Saturday, January 29, 2005

Seattle Washington Support Group News - December 2004

Thanks to Support Group Leader Vince Nelson

Greater Washington DC Support Group Meeting

San Francisco Bay Area TNA Support Groups

Alana,Thank you - my mother had received your package. Many thanks. I have set up an appointment for her to see a specialist who is also on the board later this month. She did attend a support group session this past Saturday and she was amazed at the helpfulness of everyone who attended.  So she's really glad she attended. I'll let you know if she needs further assistance, but for now, the help she has received thus far has been tremendous.
Thanks again,

MeiLin
 

Hi there,

I'm writing on behalf of my mother who seems to have (she has not been formally diagnosed) trigeminal neuralgia (probably the atypical form) on and off for 10 years. Her most recent recurrence seems to be the worst she has experienced. She has gone to an acupuncturist in the past who seemed to alleviate the pain (in the past), but has not successfully done so this time. She responds quite negatively Neurontin, her most recent treatment, as well since she experiences extreme dizziness and the inability to work (so she can keep her health insurance). So I'm writing to see if there is any specialist or point of reference that could be recommended. She lives in Fremont, California. I will probably be the best point of contact for her since she can't really talk too long continuously and painlessly.

Her primary physician did give a referral to Stanford Medical Center and she is waiting to see if insurance would pay for her to go there or not. I just thought I email to see if anything can be done to speed things up and any guidance in finding essentially the best doctor in this area closest to her. Thanks so much for your help.

The Difference We Make

Joan Foster, TNA Support Group Leader, Austin, TX

We had a TN patient in our office this week. Very classic - she has been to quite a few dentists / endodontists and needs a tremendous amount of dental care. On her patient history she neglected to list that she had TN or any of her medications. The only way Michael knew is because I told him she had TN. She WANTS her tooth pulled. If it was any other office, the dentist would not know. She has failed root canals, perio, missing teeth..... Michael would not pull the tooth - it was still vital. Patients fault the dentists and doctors. Many of them will go from doctor to doctor to find someone that will do what they want or get something for free.

Had another TN patient come in recently. We spent a tremendous amount of time with her after hours. She came from Waco. She ran up our phone bills on top of that. Her x-rays from previous office were unreadable, so we took new ones and comped them. In other words, we bent over backwards for her. Bottom line, she wanted vicoden before treatment. When we told her that her neurologist would need to medicate for non-dental needs, she proceeded to go somewhere else.

This is reality from the trenches.

Support Group Leader Charles Panian in the News

Seattle Washington Support Group News - October, 2004

New Support Groups and Telephone Support Contacts

Middle Tennessee Support Group Meeting

Tampa Support Group Meeting with Dr. Ken Casey

Sacramento California Support Group Fund Raiser

Under the direction of Support Group Leader Susan Ray, Sutter Gamma Knife Center arranged a dinner/presentation to raise money for the local TNA Support Group.  Sutter invited a large group of dentists/doctors from the Sacramento area. Dinner was free and there was also a presentation by a wonderful neurosurgeon on TN.  The attendees even earned CME credits!   At the bottom of the invitation was a sentence asking for a minimum $10 donation to our support group.  While donations weren't forthcoming, the attendees received a very good presentation on TN!

Thanks to Sacramento for a great fundraising tip!

Australia Association to hold conference

Seattle Washington Support Group News

Texas Teamwork!
August 30, 2004

Shelly:  This is one of those great TN experiences that just makes you feel good.

Well, I did the best I could to calm the father down and told him that if I had a daughter in Austin, my next phone call would be to Dr. Foster, a dentist in Austin who knows a tremendous amount about TN and related facial and that he had even participated in a couple of TNA National Conferences. I told him that the dentist had done work on me and I did great. Also, the dentist just so happened to be married to the TNA Support Group Leader in Austin and if when he called Dr. Foster’s office for an appointment, he might want to ask to speak to Joan since she has TN. I gave him Dr. Foster’s office phone number and told him to let me know if I could assist further. I also gave him Joan’s neurologist name, Dr. DuBois, and suggested Joan could be instrumental in getting his daughter an appointment with him if indeed she had classic TN.

Joan:  Mom and Dad drove down from Dallas today, picked up Traci and came here. I talked to her for about 3 minutes and said she doesn't sound like she has TN. She had dull throbbing constant pain sensitive to cold when she drank. She did not have any specific triggers or electrical shock type onsets. We took x-ray and she has an abcess! That doc in the ER diagnosed her with TN and put her on Tegretol way too quick. We put her on antibiotics and have her scheduled next week for a root canal. so the good news is that she doesn't have TN. Her parents were really relieved.

Article about Joan Foster from the austinwoman Magazine.