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History of TNA (Trigeminal Neuralgia Association)

   
 

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 (Trigeminal Neuralgia) 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.