Patient Support is available through phone calls and email messages.  This direct, personal and in-depth support serves as a lifeline for those who have been unable to find the information or relief they need.  The Director of Patient Support is available to speak to patients, professionals, family members, and friends of those affected by TN or related facial pain conditions.

If you need assistance or support, please call 1.800.929.3608 or 352.376.3608 to speak to the TNA Director of Patient Support, Alana Greca.  She is both a TN patient and a Registered Nurse and she's available Monday through Friday from 9:00 a.m. to 5:00 p.m. EST.  If Alana is taking another call, please leave a detailed message so that she can get back to you as soon as possible.  To send email, click here.

If you have an emergency, please call 9-1-1.

Welcome

Updated 5-25-06

Welcome to  TNA giving opportunities. We are delighted to provide information and resources to assist our donors.

Our mission is to develop the financial resources to support, expand and enhance the efforts of TNA to serve patients, their families, and health care professionals located in the U.S. and throughout the world.

It is through the combined efforts of many that TNA has developed into the organization that provides vital services to those in pain who need information, support and encouragement. The generosity of all of our donors is remarkable, and we are so grateful for their strong support.  Together we will end the pain!

Ways To Give

• Give By Phone - We will gladly accept gifts by phone. To make a credit card contribution, please call (352) 331.7009 or 1.800.923.3608 between the hours of 8:30 a.m. and 5:00 p.m. Eastern Standard Time, Monday through Friday. You may also leave a message after hours and we’ll promptly return your call.

• Give Online - TNA is pleased to accept gifts online. To make an online gift through our secure server payment system, click here to visit the Online Donation page.

• Give By Mail - If you prefer, you may make a gift and send it to TNA. Please send a gift of a check or money order by mail to:

TNA

925 NW 56th Terrace, Suite C

Gainesville, FL 32605-6402

• Estate Planning - Thank you for your interest in including TNA in your estate planning.

   The specific language which you need to use in your will is as follows:

  “I give, bequeath and devise to the Trigeminal Neuralgia Association, a nonprofit corporation, organized under the laws of New Jersey and having its principal office at 2801 SW Archer Road, Gainesville, Florida 32608, [the sum of $ __________] or [the property described below] or [____ percent of my residuary estate] for its general uses and purposes.”

   This bequest to TNA is deductible for estate tax purposes. However, before making any change to your Will or beneficiary designation, you should consult with your legal and/or tax advisor.

  If you have additional questions, please contact John Koff, TNA Director of Development.

• Gifts of Stock - Thank you for your interest in and generous support for TNA! A gift of stock is a way  to help TNA end the pain for so many patients, while personally receiving potential tax benefits. 

Electronic delivery of stock shares is the most secure and expedient delivery process available and it provides efficient internal control as well as cost savings. However, you may also transfer certificates directly.

To help you facilitate a gift of stock, please use the following instructions.

Initiate the Transfer - There are two most common methods of gifting securities to TNA. The first is Electronic Transfer, through which your Broker can transfer shares using the TNA DTC number. The other is physically mailing the paper certificates to TNA’s Office of Advancement. Either method is welcome, but it is necessary for you to contact your Broker to initiate the transfer process.

 

Notification of Donor Intent - Regardless of the method chosen to deliver a gift of stock, the donor or the transferring broker must provide the following information, for audit and acknowledgement purposes:

1)     Donor’s name and complete address

2)     Name and number of securities transferred

 

You may use the gift form, provide a letter, or send an email to communicate this information at the time of transfer to:

 

John Koff

FAX: 352.331.7078

Email: jkoff@tna-support.org

Securities Delivered Electronically - The following information will enable your Broker to facilitate an electronic transfer of stock:

Brokerage:	Robert W. Baird & Co., Inc.
Phone Number:	800.766.7888
DTC Number:	0547
Account Name:	Trigeminal Neuralgia Association (Tax ID#: 22-3071645)
Account Number:	8410-9409

Securities Delivered to TNA by Mail - Mail your unendorsed certificate(s) and gift form, in separate envelopes, by registered mail, to:

 TNA

Attn.: Office of Development

925 NW 56th Terrace, Suite C

Gainesville, FL 32605-6402

A gift form is provided for your convenience.

 

If you have any further questions, please contact John Koff, Director of Development, at 352.331.7009 or 1.800.923.3608.  Again, many thanks for your interest in supporting the vision and work plan of TNA! Together, we will end the pain!

Make A Gift Online

Updated 5-09-06

Support your Association's efforts!  TNA is very thankful for the generosity of its members!  It is through this kindness that we are able to continue our programs of educational outreach to the patient and professional communities.  There are three categories for giving and making a gift in any of these categories in any amount is what keeps the information and education flowing to those in need.  Visit our donation area by clicking the links below for more information on opportunities for online giving:

TNA’s Memorial Tribute Fund - Past Tributes

TNA supporters make gifts in honor or in memory of special people in their lives.
TNA’s most recent Memorial Tribute gifts (Winter 2005):

    Updated 5-30-06

Books and Literature

Updated 1-12-06

• Striking Back! The Trigeminal Neuralgia and Face Pain Handbook.  Published by TNA and written by George Weigel and Kenneth F. Casey, M.D., is written in layman's terms, describes all aspects of TN and provides information and resources for patients, family, and medical professionals.

• Kathryn Crosby, Actor, Entertainer and TNA National Spokesperson.  My Last Years With Bing.  Enjoy Ms. Crosby’s personal account of her life with husband, Bing Crosby.

Press Release

Bob Hope Comments

Purchase This Item

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

• Neurosurgeon. Published in 2004, author  Mark Shelton brings to life the work of Dr. Peter Jannetta, famed neurosurgeon and Chair of TNA’s Medical Advisory Board.  Written like a novel, it gives an inside view of what it's like to have an MVD (microvascular decompression), the groundbreaking surgery that Dr. Jannetta developed to treat TN.  From the opening vignette of a TN sufferer driven to contemplate suicide by the prospect of a life defined by excruciating pain, to moments of high operating room drama and low softball field humor, this book takes readers along on the incredible story of Jannetta and his world changing work. Patients and medical professionals alike will enjoy and learn from this book about a remarkable man and his groundbreaking work.

NY Times Book Review

Press Release

Purchase This Item

• Relaxation and Inspiration CDs.  Developed by Rowe Jones in cooperation with TNA.  Rowe is a TN and chronic pain patient. 

Rowe Jones Inspiration #1.  Music, spoken words and natural sound effects that encourage, inspire and promote relaxation. 

Rowe Jones Presents Relaxation #1.  Explore the feeling of true relaxation and healing.

 

CD Description

Purchase This Item

Iinspirational Books.  Written by Suzanne Grenell, TN patient and TNA Board Member. 

Fare Thee Well My Beloved Pet.  A message of comfort to those who have lost a pet.  Includes information about TNA and part of the proceeds support TNA.

Press Release

Purchase This Item

 

Teach Me To Fly.  Poetry that inspires.

 A Friend is Someone.  Poetry of love and Support.

 

Suzanne Grenell bio

Purchase This Item

• Physician's Primer.  A comprehensive guide to understanding TN for physicians and their patients. Item temporarily out of stock.  

Purchase This Item

• TNA 2004 Conference Report.  Over 70 pages of medical reports from the TNA 5th National Conference, held November, 2004 in Orlando, Florida. Covering three days of presentations by leading healthcare professionals in the treatment of TN and related facial pain conditions -- Diagnosis, Dental Implications, Medical Management, Surgical Procedures, Pain Management, and more!  Available after January 15, 2005. 

Purchase This Item

• Educational Videotapes.  22 videotapes and DVDs from sessions of the TNA 5th National Conference, November, 2004 held in Orlando, FL.  You may purchase the entire set or individual tapes.  Topics range from those of interest to patients as well as medical professionals.  Available after January 15, 2005. 

 Purchase Video Tapes

• TN Overview.  For patients and their families, the TNA Patient Overview includes basic information about TN and treatment options. English only available at this time. 

Purchase This Item

TNAlert

 TNA publishes its newsletter, the TNAlert three times yearly.  Our newsletter is offered to members free of charge and contains the most up-to-date news and information on advancements in the care and management of TN and related facial pain conditions.

From the current issue: WINTER, 2005.  To receive the entire newsletter and all future TNA information, click here.

If you are a medical professional and want to receive a complimentary copy of the current newsletter, along with information about newsletter subscriptions for professionals, click here. 

        Listed below are archives of recent newsletters.  They are in Adobe Acrobat format and should be readable on any computer with internet access.  If you do not have Adobe Acrobat, you can download a free copy at www.adobe.com. 

         If you are not already a supporter of TNA and would like to receive the full version of our most recent newsletter, please take the time to register here.  A copy will be sent to you at no charge and you will receive future mailings of the newsletter.        If you are a medical professional and would like to receive a complimentary copy of the current newsletter, along with information about newsletter subscriptions for professionals, click here.

TNAlert Articles

This page provides access to several articles published from 1994 to the present, in the newsletter of the Trigeminal Neuralgia Association (TNA), TN Alert. The emphasis is on items relating to both conventional and non-traditional treatment of TN. Regrettably, it has not been possible to capture the graphics which originally appeared with some of this material. For past copies of TN Alert, please contact TNA at the address above. Be sure to send your surface mailing address.

•  

• Questions and Answers About TN (1994 To

•  

• Present)

•  

• A Look at TN From a Relative's Viewpoint (Spring 1996)

• An Outpatient Surgery to Heat the Pain Away (Fall 1995)

• Are All of the Treatment Options Being Considered?  (Winter 1996)

• Are You Troubled by Anesthesia Dolorosa? (Fall 1995)

• Balloon Compression (Summer 1997)

• Coping with TN (Spring 1996)

• Gamma Knife - No Incision in Newest TN Surgery (Spring 1996)

• Glycerol Can Be Shot of Relief for Persistent Pain (Spring 1995)

• How a Psychiatrist Dealt with TN (Fall 1995)

• Kids with TN: It's Rare but Possible (Winter 1995/6)

• Surgeons Review Latest TN Treatments (Fall 1994)

• TN's Jolting Symptoms and the Drugs That Help (Spring 1995)

• TN Research: A New Drug, a Lead for MS Cases and New Studies (Winter 1995-6)

• TN Studies Show Promising Results (Fall 1995)

• Trials and Treatments of Anesthesia Dolorosa (Winter 1995/6)

• Trileptal: New Drug Showing Promise in Treatment of TN (Fall 1994)

• When The Pain Returns After Surgery (Spring 1995)

• Featured Article:  Kids and TN (Expanded)

• Free and Reduced Prescriptions (Winter 2000)

You are likewise well advised to remember that in any collection of papers concerning TN and related disorders, there may be differences of opinion concerning causes of the disorder, relationships to other medical problems, and details of treatment. The Trigeminal Neuralgia Association cannot advise you on whose opinion is most nearly "right." Please read about this disorder in depth, and seek the advice of your own physician.

Question:  What is TN? 

Answer:  A disorder of the 5^th cranial nerve.  As the Trigeminal nerve exits the brainstem, it is compressed by a blood vessel as. The compression causes the lining of the nerve (the myelin sheath) to wear away.  When the message travels down the nerve and reaches the demyelinated area, the message jumps to the next nerve, this is called cross talk.  It is much like a chair setting on an electrical cord.  Eventually the protective lining of the electrical cord will wear away and there will be sparks and the cord will short out. 

Question: I have never heard of TN, is it a relatively new disorder? 

Answer:  TN was first described in medical literature as early as 1672.  Some people know the disorder as Tic Douloureux.  TN is often misdiagnosed as a toothache or TMJ.  Many people go undiagnosed for years.   Some people are diagnosed with classic TN when they have a neuropathic pain.

Question:  What are some of the disorders often misdiagnosed as Classic TN?

 Answer:   Injury to the end of the Trigeminal nerve by some type of trauma, most often a dental procedure or a blow to the face. Post herpetic TN, better known as shingles, this facial pain occurs after a herpetic breakout.  The pain of neuropathic pain is usually constant, but can fluctuate in intensity.  The pain is usually described as burning, aching or tightness.  Many times numbness is present.  This type of pain is difficult to treat and the procedures for classic TN can make this type of pain worse.

Question:  How would you describe the pain of TN?

 Answer:  TN is an electric shock-like stabbing pain, unilateral during any on episode, sudden onset and termination.  It is universally considered to be one of the most painful afflictions known to adult men and women.

Question:  How many people have TN?

 Answer:  We really do not know.  A small survey done in the 60’s indicated 5 in 100,000 people have TN.  That was based on a study of how many people were hospitalized for TN.  Most TN patients never go to the hospital.  Based on the number attending TNA Support Groups the number is much higher.

Question:    Are there any medical  treatments for TN?

Answer:  Yes, it is treated with anticonvulsants.  The most effective treatment is with carbamazepine.  There are other medications that can be tried such as Dilantin, and most recently Carbatrol and Trileptal. If these medications become ineffective or the side effects intolerable, surgical treatment can be offered.

Question:    What are the surgical alternatives?
Answer: 

• Moving the Vessel away – Microvascular Decompression. This procedure removes the cause of the TN pain.  The MVD offers the best chance of long term relief without damaging the never further, by lifting the offending vessel and placing a padding between the vessel and the nerve.  This procedure does require a craniotomy and has the longest recovery time.
  Damaging  the nerve further in order to stop the transmission of pain. - There are several procedures that are effective for varying lengths of time. There are three that go  through the cheek up through a natural opening in the skull base called the forqmen ovale.  They can be done in the X-ray suite or the operating room.

  • Bathe the trigeminal cistern, a small sak of spinal fluid that contains the trigeminal nerve with glycerol. This affects demyelinated fibers. 

  • Burning a lesion in the nerve with Radio Frequency

  • Squeezing the nerve - Balloon Compression ( A small balloon is inflated and presses the nerve against the edge of the dura and the petrous bone.

  The newest procedure for temporary eliminating the pain of TN is to radiate the nerve – using Cobalt -  Stereotactic Radiosurgery.  (The Gamma Knife)

Question: What's your view on the cause of TN?
Answer: (Dr. John M. Tew Jr., TNA Medical Advisory Board, Winter 1995-6) 

We believe TN results from hyper-excitability of the trigeminal nerve. After exceeding a certain threshold, the increased electrical impulses traveling through the trigeminal nerve activate pain regions in the brain.  Trigeminal hyper-excitability is caused by injury to the myelin sheath that insulates the nerve fibers. When the myelin sheath is injured, electrical impulses are either activated, short circuited or reverberate, resulting in increased electrical traffic in the nerve. The cause of the myelin injury can be compression by a tumor, aneurysm vascular malformation or other vessels. Other causes include multiple sclerosis, toxins and possibly viral infections. The cause of the myelin injury can be compression by a tumor, aneurysm vascular malformation or other vessels. Other causes include multiple sclerosis, toxins and possibly viral infections. 

Question: Isn't there a test of some sort to tell if you've got TN?

Answer: (TN ALERT, Fall 1994) No. This condition is diagnosed almost entirely by the patient's described symptoms and by ruling out other sources of facial pain that can be detected.  Doctors typically order a magnetic resonance imaging (MRI) scan when TN is suspected, but that's done to check for multiple sclerosis or a tumor as a cause of the pain -- not as a way to "see" if anything is irritating the trigeminal nerve. 

Question: Some people say their trigeminal pain started soon after dental work. Can that cause TN?

Answer: (Steven Graff-Radford, D.D.S. TN Alert, Fall 1995) Invasive dental procedures do not cause TN, but they often can be the triggering factor that will initiate TN pain in a patient who is already predisposed to it. 

Question: If a compressing blood vessel is thought to be the leading cause of TN and that vessel is constantly pressing on the nerve, then why isn't the pain constant?
Answer: (Steven Graff-Radford, D.D.S. TN Alert, Fall 1995) The reason it isn't constant is because the amount and location of demyelination (loss of the nerve's protection coatings) is only sufficient to sensitize the nerve cell bodies. It's not a permanent damage that's enough to cause constant irritation and pain. So what you have to have is an external triggering to initiate the ganglion nerve cells.  Once the nerve fires and all the chemicals are depleted, it takes a while for the chemicals -- primarily sodium and potassium -- to recharge to the point where the nerve can fire again. And so that's why people have refractory periods between their attacks.

Question: Does TN ever go away on its own?
Answer: (TN ALERT, Fall 1994) Sometimes, but it's not likely. TN pain typically does run in cycles. It's very common for patients to go through periods of frequent attacks followed by weeks, months and sometimes even years of little or no pain at all. More often than not, the attacks tend to worsen over time with fewer and shorter pain-free periods.

For more  information and REGISTRATION Click here.     Video welcome to the TNA Sixth National Conference

Updated 5-16-06Thanks to our 5th National Conference Sponsors!

Regional Conferences

2005 Regional Conferences

• Click here for an overview of the New York City Regional Conference – Saturday, April 30, 2005 

• Casper, Wyoming Regional Conference - Saturday, August 13, 2005

• San Francisco, California Regional Conference - Saturday, September 17, 2005 

• Philadelphia, Pennsylvania Regional Conference - Saturday, October 1, 2005.

2006 Regional Conference

• Dallas, Texas Regional Conference - Saturday, February 18, 2006. 

Exhibits and Conferences

Updated 1-12-06  

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.  Included in our exhibition plans for FY 2004-2005 are such events as:

• American Academy of Physician Assistants

• American Academy of Neurology Annual Meeting

• American Academy of Nurse Practitioners

• American Dental Association Annual Meeting

• American Association of Neurological Surgeons Annual Meeting

• American Academy of Pain Management

• ***Circles of Health Exposition in New York City

• Congress of Neurological Surgeons

• NORD (National Organization of Rare Disorders) Annual Conference

• American Society of Pain Educators

• ***Denver Dental Convention

• ***Southwest Dental Meeting

• American Pain Society Annual Meeting

• American Academy of Orofacial Pain Annual Meeting

• ***Michigan Dental Association Meeting

• ***Texas Dental Association

• ***Tennessee Dental Association

• ***Gala Silver Senior Events

• Society for Neuroscience Annual Meeting

***Initiated and supported by local Support Groups

articles and Papers

Fentanyl Effervescent Buccal Tablets in Patients With Chronic Pain

Botulinum Toxin A Relieves Pain of Trigeminal Neuralgia

New York Times:  Practices: A New Use for Botox: Treating Facial Neuralgia

Cymbalta May Aggravate Preexisting Liver Disease

Maternal Use of Anticonvulsants Increases Risk of Craniostenosis in Offspring

Medtronic Patient-Activated Pain Device Wins OK

Botox and Trigeminal Neuralgia

Avinza Interaction With Alcohol May Be Lethal, FDA Warns

Low-Dose Radiation Numbs Lengthy Post-Shingles Pain

Harvard Magazine Cover Story:  The Science of Hurt

Long-Term Use of Antiepileptic Drugs May Lower Bone Mineral Density

Consciously Controlling Brain Activation May Reduce Pain Perception

The Pharmacology of Fentanyl and Its Impact on the Management of Pain

Team Care for Depression Among Elderly Deemed Cost-Effective

Book Review:  "Complementary and Alternative Medicine in the United States"

Reader's Response to the Book Review Entitled "Complementary and Alternative Medicine in the United States"

Author's Response to the Letter Regarding the Book Review  "Complementary and Alternative Medicine in the United States"

Chronic pain: Managing your emotions

Chronic pain: Exercise can bring relief

Painful Choices: Physicians Challenged by Quest to End Suffering
At the debate's core is the love/hate affair with the powerful class of pain medications known as opioids

Support Groups for Chronic Pain

Support Groups for Chronic Pain

Tricyclic antidepressants: Weapons against chronic pain

Use of Herbal Therapies to Relieve Pain: A Review of Efficacy and Adverse Effects

Response by some TNA Medical Advisory Board members to: An open study of botulinum-A toxin treatment of trigeminal neuralgia

Nalbuphine a Safe, Effective Long-Term Therapy for Severe Chronic Pain

Pain patients often suffer in silence

Combining Methadone With Other Long-acting and Short-acting Opioids for Pain Management

Newly Discovered Small Molecules 'Superactivate' Botox

Use records to check up on doctors

Expectations of Pain: I Think, Therefore I Am

Second opinion: 'odd' ways to bring an end to agony

FDA Approvals: Angiomax, Lyrica, Zmax

Diagnosing TN first step toward relief

Doctor finds being the patient is journey of frustration, discovery

The Search for Answers

Repetitive Transcranial Magnetic Stimulation May Be Effective Treatment for Neuropathic Pain

NPR:  Experimental Vaccine Proves Effective Against Shingles

TN featured in Neurological Focus

Recognizing Pain in Alzheimer Patients

USA Today Letter to the Editor

MRI Can Cause Serious Injury in Patients With Implanted Neurostimulators

Try Capsaicin Cream for Painful Conditions

Antiepileptics Have Low Risk of Stevens-Johnson Syndrome

Tiagabine Reduces Neuropathic Pain

Trileptal May Cause Serious Dermatologic Reactions

Compounding Pharmacist, TNA National Conference Speaker

Cymbalta, new drug for Diabetic Neuropathy

Recent Advances in Nonopioid Treatment of Pain

Opioid Therapies for the Management of Pain

How Can the Internet Help Parents of Children With Rare Neurologic Disorders?

Merck Wins Approval for Combined Fosamax Treatment

Osteoporosis and Anticonvulsants

Glaxo Recalls Lamictal Kits in US Due to Wrong Dose

Microvascular decompression for trigeminal neuralgia: comments on a series of 250 cases, including 10 patients with multiple sclerosis

Depression Can Be Managed Effectively

Drug combo packs more relief for chronic nerve pain, scientists say

Percutaneous controlled radiofrequency rhizotomy in the management of patients with trigeminal neuralgia due to multiple sclerosis

Chronic Post-Traumatic Neck and Head Pain

Treatment of herpes zoster and postherpetic neuralgia

Comparison of Percutaneous Trigeminal Ganglion Compression and MVD

Gene Polymorphisms Influence Response to Epilepsy Drugs

Treatment Options for TN - British Medical Journal

Pain in Women's Health: A Multi-Faceted Approach Toward Understanding

The Current State of Pain Management: An Expert Interview With Scott M. Fishman, MD

Valproate Taken During Pregnancy May Increase Risk of Fetal Malformations

TN in patients with multiple sclerosis: lesion localization with magnetic resonance imaging

Gamma Knife Surgery for Trigeminal Neuralgia:  Outcome, Imaging, and Brainstem Correlates

Levetiracetam  (Keppra) for the Treatment of Trigeminal Neuralgia

Injections of Botulinum Toxin Type A Produce Pain Alleviation in Intractable Trigeminal Neuralgia

Anticonvulsant drugs for acute and chronic pain

Gamma Knife Radiosurgery for Trigeminal Neuralgia:  A Study of Predictors of Success, Efficacy, Safety, and Outcome at LSUHSC

MVD for TN in the Elderly:  Safety and Efficacy

Unilateral Black Hair Tongue in Trigeminal Neuralgia

Operative Findings and Outcomes of Microvascular Decompression for Trigeminal Neuralgia in 35 Patients Affected by Multiple Sclerosis

Peripheral Stimulation for Treatment of Trigeminal Post-Herpetic Neuralgia and Trigeminal Post-Traumatic

Diagnosis and Treatment of Patients with Trigeminal Neuralgia

Facial Pain:  Neurological and Non-Neurological

MRI for Radiosurgery

Glycerol Rhizotomy for treating TN related MS

Excerpts from American Academy of Pain Medicine Conference

TN:  The Hidden Hurt

Gabitril Off-Label Use Associated with Risks of New-Onset Seizures

Plenty of pills and potential for abuse:  USA Today

Adjunctive Agents in the Management of Chronic Pain

Treatment of Post-herpetic Neuralgia

Low-dose gabapentin in combination for TN and MS

Quality of Reporting in Evaluations of Surgical Treatment of TN

Gamma Knife Surgery for Trigeminal Neuralgia: 

Outcomes and Prognostic Factors

Short-lasting Unilateral Neuralgiform Headache with Conjunctival Injection and Tearing Syndrome Treated with Microvascular Decompression of the Trigeminal Nerve

Pain in Women's Health: A Multi-Faceted Approach Toward Understanding

Carnitine Deficiency

UCLA Pain Diseases and Disorders:  Trigeminal Neuralgia 

Supplemental Carnitine May Be Helpful in Diabetic Neuropathy

Variants of COMT Gene Influence Pain Sensitivity

County Executive Says Facial Condition Pain Gone

Novel Treatments in the Pipeline for Neuropathic Pain

Listen to the Patient

RV Life Magazine.  Persistence Pays.  Follow-up article.

Dr. Donohue:  Nerve malfunction gives rise to dreadful pain

Post Herpetic Neuralgia

San Antonio Texas Newspaper

Four-Year-Old With TN

Jane Austen - A Life

Actress, Singer and Nurse Kathryn Crosby

to Visit UF as Advocate for Facial Pain Disease

View WebMD: 

"Self-Help:  Popular, but Effective?"

Health and Age.com

The Commonest Facial Pain

Health and Age.com

Opiods Can Relieve Nerve Pain

Health and Age.com

Acupuncture and Chronic Headache

Gamma Knife's Relief Painless

Jacksonville Times-Union, 9-20-04

AARP Article - Rooting Out Pain

 Dr. Donohue:  Nerve Irritation Creates unbearable pain

Dr. Donohue: Medicines can control many facial tics

RV Life Magazine

austinwoman Magazine

 MD News Article

Article Review:   "Gamma Knife Radiosurgery for Trigeminal Neuralgia:"  Shaya M, Jawahar A, Caldito G, Sin A, Willis BK, Nanda A. gamma knife radiosurgery for trigeminal neuralgia: a study of predictors of success, efficacy, safety, and outcome at LSUHSC. Surg Neurol 2004;61:529 -35.  Go to first part of Article.  Go to last part of Article.  Review

Articles From or About the Medical

Literature

"Diagnosis and Differential Diagnosis of TN" - Joanna M. Zakrzewska, MD, FDSRCS, FFDRCSI from The Clinical Journal of Pain, 2002.

"Self-Help:  Popular, but Effective?"  The number of self-help books, organizations, and online support groups has mushroomed in recent years.  The range of topics they cover varies -- but their impact is clear.  Article linked to by permission from WebMD.  Written by Dulce Zamora and includes a short interview with TNA Founder and President Emeritus, Claire Patterson. 

"How Can We Evaluate Articles in the Medical Literature?"   This is an effort by the creator of this site to help lay readers think critically about outcome studies and other medical information found on line or in print literature.  Comments are welcome.  We're all learners here.

"Therapeutic Decisions in Facial Pain" is an authorized pre-print of work presented in October 1998 to a meeting of the Congress of Neurological Surgeons at Seattle, Washington.   Dr. John Tew, M.D., and Dr. Jamal Taha, M.D. have reviewed ten years of the medical literature, to assess outcomes from a surgical perspective.  The work was published in the annual edition of Clinical Neurosurgery for 1999.  We are grateful to both authors and to their publisher for permission to present this work for discussion, months in advance of its appearance in print.

"Neurovascular Decompression -- Procedure of Choice?"  This paper was also presented to the October 1998 meeting of CNS. Dr Ronald I. Apfelbaum addresses alternatives in surgical treatment for facial neuralgia.  Like the article above, the work was published in the annual edition of Clinical Neurosurgery for 1999.  We are grateful to the author and to publisher for permission to preprint.

"Choosing Between Treatments for Trigeminal Neuralgia"  is a contribution by Red Lawhern,  writing as the spouse and supporter of a TN patient.  This is a compilation of information from many sources encountered in three years of answering questions from my spouse and other patients.  It is based on research in the medical literature and on the Internet.  Several patients and professionals have read it and prompted re-write some sections.  Some of those who read it have expressed the thought that they wished they had something like it when they were first learning about TN and its treatments. However, the author is  not a health care professional:  any remaining errors are the author's, not the reviewers'.

Please do not attempt to substitute a reading of articles in any source, for consultations with a qualified professional caregiver:  a neurologist, neurosurgeon, craniofacial pain specialist, anesthesiologist, dentist specializing in face pain disorders, or others to whom such caregivers may refer you.  If you find something in this archive that seems to contradict the treatment you are receiving, print it and discuss it with your health care provider.

Abstracts from the Third TNA National Conference held in Pittsburgh, PA on October 26-29, 2002.   Scientific Presentation Abstracts .  In October 2000, the third bi-annual Trigeminal Neuralgia conference was hosted at Pittsburgh PA by the Allegheny General Hospital.  The conference featured interactive panel discussions with extensive audience participation. The meetings were supported by a faculty of over 50 medical, dental, and pain treatment professionals from the US and UK and  was attended an audience of 300+ patients, family members, and support group leaders. 

Selected Reports from the Second Annual National Conference, held in Orlando, FL on November 11-15, 1998. 

Organizations and Resources

As the nature of TN becomes more generally known to the public, a number of Internet resources are emerging that are directed to patients, family, and physicians who deal with this disorder and others that cause similar problems. Naturally, there is significant overlap between collections of resources. TNA does not "endorse" one source over another. However, the following links are a starting place for research and patient assistance.

Mercy Medical.  Free air travel for medical needs

Check for Drug Interaction

TNA Information Sheets Available.  FREE!  Receive via email.

TN information in German

TN information in Spanish

Mayfield Clinic, Cincinnati, Ohio.  University of Cincinnati Department of Neurosurgery.  Home for TNA Medical Advisory Board member Dr. John Tew.

Trigeminal Neuralgia Diagnostic Questionnaire.  Answer questions that may help you determine if you have TN.  This was developed by the Department of Neurological Surgery at Oregon Health and Science University in Portland, Oregon.  Once the questionnaire is complete, you will see a potential diagnosis.  Your information will NOT be saved and/or collected.

The International Academy of Compounding Pharmacists (IACP) is an international, non-profit association protecting and promoting the art and skill of pharmaceutical compounding. IACP's membership consists of more than 1,700 pharmacists who are committed to protecting the birthright of the profession of pharmacy - compounding. Since the organization's inception in 1991, IACP has sought to protect pharmacists' rights to compound medications. And, in 1997 IACP met this goal; legislation was passed to ensure this protection. A pharmacy compounding provision was attached to the Food and Drug Administration Modernization Act of 1997 (FDAMA) recognizing the importance of compounding and providing for its continued practice.

The American Society of Pain Educators is a non-profit professional organization, whose mission is to improve the standards of clinical pain practice by providing training in pain management education and helping to establish credentialed pain educators (CPEs) as standing resources within pain practices, hospitals, healthcare systems, and long-term care facilities. The ASPE is the sole credentialing agency for pain educators in the United States. A Credentialed Pain Educator (CPE) is a healthcare professional who has developed a core body of knowledge and practical skills in the education and management of pain above and beyond their primary training. The CPE's core focus is to help improve the quality of life of those suffering with pain, as well as serve as an in-house resource for their healthcare professional peers.

International Association for the Study of Pain.  The largest multidisciplinary international association in the field of pain. Founded in 1973, IASP is a non-profit professional organization dedicated to furthering research on pain and improving the care of patients with pain. Membership in IASP is open to scientists, physicians, dentists, psychologists, nurses, physical therapists, and other health professionals actively engaged in pain research and to those who have special interest in the diagnosis and treatment of pain. Currently IASP has 6744 individual members from 107 countries.

http://www.ohsu.edu/facialpain/progress.shtml.  Oregon Health Science University's website on TN.  Includes a self-diagnosis tool.

UCLA Pain Diseases and Disorders:  Trigeminal Neuralgia 

Using Complementary Therapy to Relieve Pain

Medline Plus.  Medical Encyclopedia

Medline Plus  TN information from the US National Library of Medicine and the National Institutes of Health. 

Helping Patients Meet Their Needs.  A resource for low-income, uninsured patients.

http://www.hfs-assn.org/ - The National Hemifacial Spasm Association is international online support community of individuals who have or are presently suffering from Hemifacial Spasm.

Health Assistance Partnership - If you have questions about health care access and health insurance that you can't always answer, the Health Assistance Partnership can help you.

http://www.umanitoba.ca/cranial_nerves/ccndhome.htm:  The Center for Cranial Nerve Disorders is a neurosurgery clinic specializing in the diagnosis and treatment of disorders involving the cranial nerves. This web-site provides informative and interactive pages about cranial nerve disorders and their treatment options, including an interactive tutorial on TN and all the procedures.  The tutorial will take about 30 - 45 minutes of your time.

Facial Neuralgia Resources:  is a large, patient-to-patient resource site information on face pain caused by disorders of the  cranial nerves.  These disorders include trigeminal neuralgia, atypical trigeminal neuralgia, atypical facial pain, anesthesia dolorosa. 

Oregon Health and Science University Facial Pain Progress:  From the Department of Neurosurgery, this site is updated regularly and provides current information about surgical treatments for TN and related facial pain conditions.  Pictures and videos of surgery are available on this site.

In Pain, Out of Work and Can't Pay the Bills, Resource Directory of RSDS Association.  A resource to help those in pain navigate the assistance systems available.

Acoustic Neuroma Association:  Acoustic Neuroma is a slow-growing benign tissue growth on the eighth cranial nerve.  Diagnosis by MRI screening is generally reliable.  Surgical intervention may be associated with loss of hearing, dry eye, facial paralysis or difficulties with balance.   AN patients sometimes also develop trigeminal neuralgia pain due to nerve compressions, some of which may not be directly related to their AN.

Agency for Health Care Research and Quality:  "AHRQ, a part of the U.S. Department of Health and Human Services, is the lead agency charged with supporting research designed to improve the quality of healthcare, reduce its cost, improve patient safety, decrease medical errors, and broaden access to essential services. AHRQ sponsors and conducts research that provides evidence-based information on healthcare  outcomes; quality; and cost, use, and access. The information helps healthcare decision-makers—patients and clinicians, health system leaders, and policymakers—make more  informed decisions and improve the quality of healthcare services."

American Pain Society:  "a multidisciplinary educational and scientific organization dedicated to serving people in pain. The society was founded in 1978 as a national chapter of the International Association for the Study of Pain (IASP), and now  includes more than 3,200 physicians, nurses, psychologists, dentists, scientists, pharmacologists, therapists and social  workers who research and treat pain and advocate for  patients with pain." 

American Academy of Pain Management: "the largest multidisciplinary pain society and largest physician based pain society in the United States."  Includes FAQ files for patients and doctors,  a searchable membership list of pain management professionals, other information and resources for chronic pain patients. 

Clinical Trials:  A service of NIH. Many patients have great interest in learning of the newest research efforts to deal with pain related issues.  On February 29, 2000, "the National Institutes of Health launched the first phase of a consumer-friendly database that provides information on thousands of federal and private clinical research studies."  See also an NIH press release summarizing this effort. 

The Dana Alliance:  Want to know what is current in brain research, immunology, or arts education? Browse through this site for the news, read the publications, listen to broadcasts, and keep informed.

Doctor Directory:  Search for a doctor by specialty, city and state.  Information also available on sanctions outstanding against doctors' licenses. 

Friends of the NIDCR:  National Institute of Dental and Craniofacial Research (located on the campus of the National Institutes for Health).  Advocacy group working to foster and focus research on causes and remedies for oral and craniofacial conditions and disorders.  See particularly, the section on Patient Advocacy.

Health Information in Spanish  Salud Informacion en Spaniol from the Centers for Disease Control, US Government

Merck Manual On-Line:  A master authoritative publication on diagnosis and treatment of many diseases and disorders, used by professional healthcare providers.  Includes extensive material on neurology.

Multiple Sclerosis Association of America: about 2-5% of all TN patients also suffer from MS.  This site provides resources on the disease.

National Center for Complementary and Alternative Medicine - National Institutes of Health:  Many pain patients have heard about  "complementary" medicine as an element of treatment for pain.  This office within NIH is a place to review what is known (and not yet known) about outcomes of such treatments. See especially resources on Acupuncture.

National Institute of Neurological Disorders and Stroke:  see particularly: MEDLINE Research Search (Pre-Formatted, By Disorder)

The Neuroscience Institute (Health Alliance):  Treatment information sheets on several neurological disorders.  Points of contact for associated physicians in the Cincinatti Ohio and Northern Kentucky area. The Health Alliance itself sponsors a "find a doctor" service for this region.

The AAN :  American Academy of Neurology and the AAN Education and Research Foundation.  AAN also provides a "find a neurologist" service for neurologists who are members of AAN.  The site provides both a "guest" service and a free membership sign-in.

Physicians and Pain Management Clinics:  An extensive  collection of links to accredited pain physicians and clinics, assembled by David Lamborne, a pain patient who has worked with the AOL Pain Relief Center Forum. 

Sinusitis Information and Treatment:  from Sinucare, a network of physicians in several states of the US, who specialize in sinusitis.  Trigeminal neuralgia can sometimes be mistaken for chronic sinusitis, and visa versa  [note:  see our Site Use Policy on non-endorsement]. Surgical Treatment of Trigeminal Neuralgia and Hemifacial Spasm: by Dr. Albert L. Rhoton, Jr., M.D., Department of Neurological Surgery, College of Medicine, University of Florida.  Dr. Rhoton is a member of the Medical Advisory Board for TNA.  For information on other neurosurgical treatment at the University of Florida, see also, Clinical Specialties.

TN Support Groups on the Web: United Kingdom (London)TMJ Association (Temporomandibular Joint Problems):   Information and patient support in a jaw disorder for which trigeminal neuralgia is sometimes mistaken.

  Updated on 1-17-06