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  • Title: Facial Neuralgia Resources Homepage
    Descriptive info: .. TABLE OF CONTENTS.. Last Updated 01/31/07.. DISCLAIMER.. View Our.. Guestbook.. CONDITIONS.. FACIAL NEURALGIAS.. OTHER CRANIAL NEURALGIAS.. DENTAL CONDITIONS.. NEURALGIA-LIKE DISORDERS.. TREATMENTS.. DRUGS.. SURGERY.. ALTERNATIVE.. SUPPORT.. ORGANIZATIONS.. SUPPORT GROUPS.. NEWSLETTER.. TN-L.. MAILING LIST.. TN-L ARCHIVES.. WEB FORUM.. CHAT ROOMS.. INTERNATIONAL SUPPORT.. TRUE STORIES.. SHARE YOUR STORY.. FAMILY FRIENDS.. CLINICS.. SPECIALISTS.. COPING SKILLS.. PAIN MANAGEMENT.. READER TIPS.. NUTRITION.. STRESS MANAGEMENT.. HUMOR.. EXPRESS YOURSELF.. RESEARCH.. BIBLIOGRAPHY.. RESEARCH TOOLKIT.. CLINICAL TRIALS.. FACE PAIN SURVEY.. BOOKSTORE.. MEDICAL RESOURCES.. NEWS / ANNOUNCEMENTS.. ABOUT THIS WEBSITE.. WHAT'S NEW.. WHO WE ARE.. OUR LOGO / THEME MUSIC.. ACKNOWLEDGMENTS.. OUR GOALS GUIDELINES.. G.. U.. E.. S.. T.. B.. O.. K.. JOIN US.. SITE MAP.. WE.. SUBSCRIBE TO THE.. HONCODE PRINCIPLES.. OF THE.. HEALTH ON THE NET FOUNDATION.. Search for books on Facial Neuralgias.. STRIKING BACK!.. THE TRIGEMINAL NEURALGIA AND FACE PAIN HANDBOOK by.. George Weigel.. Kenneth F.. Casey, M.. D,.. The 2004 revision of this important book,.. published by the Trigeminal Neuralgia Association is available with updated information on face pain.. With chapters on causes, diagnosis, latest treatment options along with comparative statistics on outcomes and complications of surgical procedures, recommendations on helping your doctor help you, this is a.. must read book.. for anyone with face pain.. There is much new information that makes it worthwhile to get the new edition of this book even if you own the first edition.. Read more about it.. or.. Order your copy from the Trigeminal Neuralgia Association.. for $24.. 95.. Facial Neuralgia Resources.. is a patient-to-patient resource for victims of face pain caused by disorders of the cranial nerves.. These disorders include:.. Trigeminal Neuralgia.. Atypical Trigeminal Neuralgia.. Atypical Facial Pain.. Anesthesia Dolorosa.. Facial Neuralgia Resources is a direct offshoot of.. Trigeminal Neuralgia Resources.. established in 1995 by a group of TN patients.. We have expanded our focus to encompass all facial neuralgias as we feel strongly we will find strength in unity.. We believe our many common issues will lead to finding improved care for people with these terrible conditions.. Who We Are.. Special Note: This site is administered by a group of facial neuralgia victims working on a volunteer basis.. None of us is a medical professional  ...   are available for purchase.. NEUROSTIMULATION.. Another treatment.. option to consider.. MOTOR CORTEX STIMULATION.. Read about one woman's.. experience with Motor Cortex Stimulation.. to relieve her facial pain.. FACIAL PAIN.. See this comprehensive.. Facial Pain resource.. with Dr.. Kim Burchiel's new.. Face Pain classification,.. along with an interactive.. Facial Pain Diagnosis.. tool.. DRUG RECALL.. 75 mcg/hr Duragesic Patch.. TNA-UK.. Take a look at the.. TNA-UK Website.. with forums, a chatroom and more.. Center for.. Cranial Nerve Disorders.. Don't miss the animated.. Trigeminal Neuralgia Tutorial.. (Highly recommended) and an excellent.. Trigeminal Neuralgia Guide.. MVD Video.. View an online.. video.. of Microvascular decompression surgery (MVD) from the.. Skull Base Institute.. in Los Angeles, CA.. DRUG ASSISTANCE PROGRAM.. Pharmaceutical companies sometimes.. provide prescription drugs free of charge to physicians whose patients cannot afford to buy necessary medications.. The.. Directory of Prescription Drug Patient Assistance Programs.. lists these drug companies, the medicines covered and eligibility criteria.. Trigeminal Neuralgia Association Conferences.. TNA Conference 2000.. TNA Summary.. TNA UK Summeray.. Debby Robarge's Notes.. Sher A.. Cuzzivoglio's Notes.. TNA Conference 1998.. TNA Summary.. CLINICAL TRIALS FOR FACIAL NEURALGIAS.. Tools to help you do your own research.. BE PART OF THE SOLUTION.. If you or someone you know has been diagnosed with a facial neuralgia disorder, please consider participating in the.. Trigeminal Neuralgia Association's International Registry.. for patients with facial neuralgia disorders.. This survey will gather statistical information about facial neuralgia syndromes, treatment outcomes and side-effects.. All information you send will be kept completely confidential.. Fill in the TNA survey online.. phone, write.. send email.. to the Trigeminal Neuralgia Association, requesting a survey be sent to you.. Be sure to include your mailing address and phone number.. Knowledge is power.. By joining together, we can lend our support in finding answers to these terrible disorders.. Please e-mail comments / suggestions to.. editors@facial-neuralgia.. org.. © Copyright 1995-2007 Trigeminal Neuralgia Resources / Facial Neuralgia Resources.. Permission is granted for non-commercial replication of excerpts from this material, provided that appropriate notice is included of both its authorship and its copyright status.. Permission for commercial replication must be obtained from the authors.. Please do not post any mirror copies on your sites..

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  • Title: Facial Neuralgia Resources:  Disclaimer
    Descriptive info: FACIAL NEURALGIA.. RESOURCES.. Together, we can make.. a difference.. facial-neuralgia.. Last Updated 09/15/06.. TABLE OF CONTENTS.. HOME.. ABOUT FNR.. FACIAL NEURALGIA RESOURCES.. The Facial Neuralgia Resources website has been compiled by a group of patients working independently and on their own.. This site is meant to be a.. patient-to-patient resource.. , containing information that other patients have found useful.. We try to keep the standard of information as high as possible, but make no pretense of being medical professionals.. When reading the material, please always keep in mind that it has been written by amateurs trying to understand a very difficult subject.. Although we present information on treatments,  ...   replace the expert care and advice of a qualified physician.. Rapid scientific advances in medicine may cause information contained on our website to become outdated, invalid or subject to debate.. Although we make every attempt to maintain the highest of standards, we cannot guarantee accuracy and assume no responsibility for how information contained on our site is used.. Please note that the Facial Neuralgia Resources group is in no way associated with Massachusetts General Hospital or the Harvard Medical School.. MGH has simply graciously allowed us the use of their server.. Please e-mail comments / questions for this section of FNR to.. © Copyright 1995-2006 Trigeminal Neuralgia Resources /..

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  • Title: Facial Neuralgia Resources:  Guestbook
    Descriptive info: Last Updated 05/22/07.. HOMEPAGE.. What's New.. Our Logo and Theme Song.. Goals Guidelines.. u.. e.. s.. t.. b.. o.. k.. Join Us.. GUESTBOOK.. The Facial Neuralgia Resources Guestbook is currently for reading only because of recent spam attacks.. Unfortunately, we can no longer support an ongoing guestbook because of constant spam attacks.. You are welcome to.. read the guestbook.. but  ...   of stories from people who have signed the book since 1999.. Their stories are inspiring, tragic, heroic and full of useful information.. If you want to post information about your situation or ask questions, please go to.. Share your Story.. It may take several days (or longer) for your story to appear online.. If you have questions, please.. email us.. Thanks..

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  • Title: Facial Neuralgia Resources:  Conditions
    Descriptive info: Facial Neuralgias.. Other Cranial Neuralgias.. Dental Disorders.. Related Disorders.. ABOUT THIS SITE.. |.. |.. Disclaimer.. Trigeminal neuralgia is probably the best known of the very rare and painful conditions affecting the cranial nerves.. As a group, these conditions are known as facial neuralgias.. These disorders cause facial and intra-oral (inside the mouth) pain ranging from mild burning sensations to incapacitating lightning bolts of excruciating pain.. No one knows with certainty what causes these conditions.. In the case of trigeminal neuralgia, some suspect compression of the trigeminal nerve by a vein or artery.. In some cases, physical injury causes the condition.. In rare cases, tumors or multiple sclerosis can cause nerve damage  ...   type of pain.. In the following sections we discuss both facial and other cranial neuralgias along with other conditions that involve nerve damage or in which facial neuralgias are a complication.. It is our hope that by examining these conditions and their treatments we might find something in common that could be of benefit.. At the very least, people with similar conditions can share different strategies for dealing with pain from nerve disorders.. Atypical Trigeminal Neuralgia.. Glossopharyngeal Neuralgia.. Nervus Intermedius (or Geniculate Neuralgia).. Vegal and Superior Laryngeal Neuralgia.. Occipital Neuralgia.. NICO.. Oral Nerve Injury.. Atypical Odontalgia.. Related.. Disorders.. Postherpetic Neuralgia.. Hemifacial Spasm (HFS).. Acoustic Neuroma.. Parry-Romberg Syndrome.. Multiple Sclerosis.. Diabetic Neuropathy..

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  • Title: Facial Neuralgia Resources:  Treatments
    Descriptive info: Drugs.. Surgical.. Alternative.. TREATMENTS FOR.. FACIAL NEURALGIA.. This section deals with the various treatments that have been used to treat facial neuralgias.. under some form of professional supervision.. This point cannot be stressed enough.. The treatments mentioned in the Drugs and Surgical sections should and can only be tried under a doctor's watching eye.. Should you wish to try one of the Alternative treatments, it is highly recommended that you seek out a qualified and legitimate practitioner.. There are some things that you can try out by yourself; these are discussed separately in the.. Practical Hints.. section.. To put this section in the correct perspective, please remember that.. it has been conceived and written by people with no official medical training whatsoever.. Professional assistance and advice has been (and will be.. ) gladly taken whenever it has been given, but in the end, this section has been written by facial neuralgia victims for the benefit of facial neuralgia victims.. Our primary aim has been to collect the widest possible selection of plausible treatments.. Most of the surgical treatments described in the following pages are used to help Trigeminal Neuralgia and Glossopharyngeal Neuralgia patients.. Many textbooks and doctors will cite one or two treatments and state that they are effective in dealing with true TN or GN.. If a patient does not respond to these treatments, then he or she does not have typical TN.. Indeed, for classical text-book cases the standard treatments are often effective.. Unfortunately, real people are real people and rarely classical text-book cases.. Atypical features seem to be the rule rather than the exception.. (This is not a rigorous scientific claim, but an observation based on personal and others' experiences).. Therefore, in spite of what  ...   used routinely by others.. It is not uncommon to find almost fanatic attachment to one particular mode of treatment.. To put it bluntly: it's a jungle out there.. We have tried our best to hack through that jungle.. That is all we can say and promise.. We have made every effort to find high-quality information, but in the end we can make no guarantees about what is in these pages.. They are here for you to browse in the hope that you will be able to make informed decisions about your condition and treatments.. If you find anything interesting here, by all means mention it to your doctor as a possibility.. We emphasize that any actual decisions should and must be made under professional supervision.. The treatments.. Drug treatments.. Various drugs are usually the first line of treatment for facial neuralgias.. Anticonvulsants and antidepressants are routinely given in various combinations for TN and GN disorders.. Various other drugs have also been used for individual facial neuralgia cases.. Surgical treatments.. If drugs do not help or the side effects are too severe, there are several different surgical options available to TN and GN patients.. Other facial neuralgia disorders such as atypical TN and atypical facial pain often are not helped by surgery.. Each surgical option has its advantages and disadvantages.. We have tried to be as evenhanded as possible, but here more than anywhere else the material is difficult, conflicting, and even controversial.. Alternative treatments.. This category contains a wide variety of treatments that are usually not mentioned in the more rigorous literature, but are nevertheless commonly used.. Some of the treatments deal with the side effects of facial neuralgias rather than the condition itself.. Some are borderline or pseudo-scientific..

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  • Title: Facial Neuralgia Resources:  Drug treatments for Facial Neuralgias
    Descriptive info: DRUG TREATMENTS FOR.. According to Joanna M.. Zakrzewska, MD, head of the Department of Oral Medicine at St.. , Bartholomew's and the Royal London School of Medicine and Dentistry, only 12 controlled trials on the effects of certain medications on trigeminal neuralgia have been conducted, among them.. Tegretol, Pimozide, Lamotrigine and Baclofen.. The drugs used to treat trigeminal neuralgia and related conditions are divided into five groups.. Anticonvulsants.. (anti-epileptic drugs).. Antidepressants.. Anti-spasticity drugs.. Ordinary painkillers.. Experimental drugs.. The National Institute of Neurological Disorders and Stroke (NINDS) has written a simple introduction to pain medications.. Though applicable to neurological pain syndromes in general, the article contains good specific references to TN medications as well.. See.. Treatment Options for Chronic Pain.. Drug Assistance Programs.. The pharmaceutical industry has had a long-standing tradition of providing prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines.. The following website give information about what medicines are covered and eligibility criteria.. RXHope.. Anticonvulsants are usually the most effective drugs for treating classical TN pain.. Unfortunately, these drugs tend to have serious side effects, including effects on the blood levels.. The most usual anticonvulsant used for TN still appears to be carbamazepine.. The other anticonvulsants appear to be mainly in experimental use.. The differences between them are small, and the choice of one over another is somewhat arbitrary.. They appear to be  ...   the nerves themselves.. They can be effective in the early stages of TN and are often used in conjunction with other drugs, especially tegretol.. They help reduce the spasms that TN often causes.. In particular, atypical TN sufferers may benefit from these drugs.. Baclofen.. (Lioresal).. Painkillers.. The most hellish thing about TN is that few ordinary painkillers are effective for the pain.. Even moderately strong opiates often do not help, let alone over-the-counter NSAIDS (nonsteroidal anti-inflammatory drugs such as aspirin).. These drug groups thus cannot be considered to be in the mainstream for relieving TN pain, but are included here for completeness.. NSAIDS.. Opioids.. Other analgesics.. Experimental Medications.. There are some drugs that could have conceivable effects on TN, but no official link has yet been established.. It is very important to note that.. the some of the drugs in this category have not been medically tested for TN.. Amerge.. A migraine medication.. Anecdotal use for TN.. Cafergot.. Mexiletine.. Ordinarily used for heart rhythm problems.. Also in experimental use for neuropathic pain.. Use for TN pain has been suggested.. Misoprostol (Cytotec).. This anti-ulcer drug shows promise for patients whose TN is the result of multiple sclerosis.. Pimozide (Orap).. Used primarily for chronic schizophrenia and Tourette's Syndrome.. Use for TN has also been suggested.. Sumatriptan.. Used for migraines and cluster headaches.. Valproic acid.. A new epilepsy and migraine drug.. Use for TN is experimental..

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  • Title: Facial Neuralgia Resources: Surgical Treatments
    Descriptive info: SURGICAL TREATMENTS.. FOR FACIAL NEURALGIAS.. Nerve Blocks.. Neurotomy.. Rhizotomy.. Microvascular Decompression.. Neurostimulation.. Experimental.. A special caveat must be made about this section:.. the terminology may be confusing and confused.. The medical jargon in the field of neurosurgery is complicated (and occasionally inconsistent) such that it can be difficult for non-professionals to understand.. Please read these pages with a skeptical mind.. Surgical treatments are generally attempted only when drug treatments are not effective or there are serious side-effects.. According to the Trigeminal Neuralgia Association, there are five surgical treatments that are commonly used to treat trigeminal neuralgia and some related facial neuralgias.. Balloon Compression.. Radiofrequency Rhizotomy.. Glycerol Rhizotomy.. Radiosurgery (using the Gamma Knife or Linac).. Neurostimulation is a newer treatment that is being used to treat difficult-to-treat facial pain and is one of the few treatments that may help anesthesia dolorosa.. In many cases, the five standard surgical procedures are not as successful for atypical trigeminal neuralgia or for atypical facial pain and can actually make the pain worse.. Thus, it is important to identify whether a condition is atypical.. One way is by looking at the effectiveness of Tegretol.. If tegretol relieves the pain, at least in the beginning, the condition is considered to be typical TN.. If the pain is constant or has a burning component, the condition could have atypical features.. As with most procedures, these surgeries have risks, can be expensive and in some cases, can aggravate a condition.. In all of the above procedures, pain can recur afterwards.. Several recent studies analyze the effectiveness and safety of surgical procedures for trigeminal neuralgia.. Taha et al.. - Analyzes the five-year effectiveness of some of the surgical treatments.. Taha and Tew.. - Summarizes reported results for ten years of medical literature on neurosurgery outcomes for eight types of face pain:.. Jannetta et.. al.. - The Long-Term Outcome of Microvascular Decompression for Trigeminal Neuralgia.. Deciding on Surgery.. There is major disagreement as to which treatment is the best.. TN and some related facial neuralgias respond to all of the above surgical procedures but none of them works for everyone.. When making a decision about surgery and on which procedure, you should ask your doctors questions about the different procedures and about their experience with these procedures.. Some questions you  ...   neurotomy.. refers to the cutting of the nerve to prevent pain signals from traveling along it.. This treatment does not have a very good long-term track record because of the scarring it can result in.. It appears to be going out of fashion.. Gangliolytic Surgical Treatments (R.. hizotomy.. ).. gangliolysis.. rhizotomy.. refers to a small lesioning of the nerve.. The effectiveness of this technique lies in the fact that pain-carrying nerves are damaged more easily than are other nerve fibers.. Therefore, pain relief may be attained without disturbing numbness of the face.. A rhizotomy has some of the same problems as a neurotomy, but to a much lesser extent.. In the best case, the lesion blocks the pain impulse and causes pain relief without side effects.. However, a frequent side effect is partial or total numbness of the affected side of the face.. One major problem is that these methods sometimes require cutting open the skin, causing a possibility of disfigurement.. On the other hand, these procedures are far less dangerous than major surgery such as MVD.. Several different methods have been used.. The neurolytic block is the oldest, and rarely used today.. RFT and RFL are more commonly used.. The gamma knife operation is expensive, but similar in principle.. Balloon decompression is also occasionally used.. Neurolytic Block ( Glycerol / Alcohol Injection ).. Radiofrequency Lesioning/Thermocoagulation (RFL/RFT).. Balloon rhizotomy ( Balloon Decompression ).. Gamma Knife Operation.. Microvascular.. Surgical Treatments.. Some cases of TN appear to be caused by a small blood vessel constricting the trigeminal nerve near its root.. These cases can often be effectively treated by MVD, an operation in which the blood vessel is carefully separated from the nerve.. MVD is a major and difficult surgical operation, with all the risks involved in an operation.. It is thus rarely if ever a first-choice treatment.. Microvascular decompression ( MVD ).. Neurostimulation is a medical treatment for people suffering from chronic pain, including Trigeminal Neuralgia and other facial neuralgias.. A small device, much like a pacemaker delivers low voltage electrical stimulation to the spinal cord or targeted peripheral nerve to block the sensation of pain.. Once experimental, this treatment is being used more often to treat intractable facial pain.. Neuros.. timulation.. A few experimental surgical-type treatments have been suggested.. NICO Surgery..

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  • Title: Facial Neuralgia Resources:  Alternative Treatments
    Descriptive info: ALTERNATIVE TREATMENTS.. Anesthetic Substances.. Therapeutic Substances.. Other Treatments.. Musculo-skeletal Treatments.. Acupuncture-like Treatments.. This section contains a wide variety of so-called alternative treatments.. Some are medical treatments that are generally used for other purposes, but which have anecdotally been used to try to treat facial neuralgia pain.. Most of this anecdotal information has been gathered from contacts with facial neuralgia victims.. They may or may not be effective; the important point is that someone has tried them.. Some of the treatments in this category are what is often known as pseudo-scientific.. That is, there seems to be no rigorous scientific basis for them.. However, the entire philosophy behind these treatments is different from that of rigorous Western science, a point summarized by Wren Osborn in her.. Case For Alternative Treatments for TN.. These treatments have two main problems.. One problem is the possibility of fraud: unethical practitioners can easily charge large sums of money for essentially useless treatments.. There is also the potential for damage if these treatments are used when a more traditional approach could be more helpful.. Nevertheless, people have tried to treat their facial neuralgias with them, so they should be included in Facial Neuralgia Resources.. We need to examine treatments for facial neuralgias, the good and the bad.. How you personally view them is up to you.. Please note that whenever possible, we include links to.. both.. positive and negative articles on the subject.. It is good to know both sides of a controversial subject.. Some of the pages are still under construction, and there is as yet no information on them; however, since someone has mentioned them, they are mentioned here.. Information will be added as soon as possible.. To make some sense of the bewildering number of alternative treatments available, an  ...   more serious side effects.. Therapeutic.. This group includes a variety of substances that have been suggested for facial neuralgia pain.. Some of the substances may raise controversy, but an attempt has been made to avoid listing any substances that are directly harmful or poisonous.. Herbal remedies.. Various herbal regimes have been suggested for TN.. Info will be added later.. Homeopathy.. A controversial treatment, but has been used by some.. Prostaglandins.. Very uncertain link to TN or other facial neuralgias.. Vitamin B12.. Could help strengthen the facial nerve.. Musculo.. -skeletal treatments.. These treatments treat the muscles rather than dealing with the nerve directly.. At the very least, this relaxation can make it easier to deal with the pain.. It is also possible that some cases of facial neuralgias are made worse by muscular strain, in which case these treatments could provide direct help.. For classical TN, these treatments are likely to have little effect; however, they may well help those with more atypical symptoms.. Chiropractic.. Myotherapy.. (Or myofascial release therapy).. Osteopathy.. Acupunctur.. e-like treatments.. These treatments treat the nervous system directly (at least in theory).. For lack of a better term, they can be classified under the term acupuncture-like.. All have been reported to be used for facial neuralgia pain; as with all alternative treatments, the results have been inconclusive.. Acupuncture.. Used relatively commonly; however, reliable success rates are almost impossible to calculate.. Laser treatment.. New, experimental treatment.. Mechanism may be somewhat similar to acupuncture.. Moxa therapy.. Similar to normal acupuncture.. TENS.. Electrical treatment; effects may be similar to acupuncture.. Other.. treatments.. Hypnosis.. This has been suggested for atypical as well as classical forms of TN.. Only anecdotal evidence for it seems to exist so far.. However, even some reputable textbooks do mention it as a reputable treatment..

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  • Title: Facial Neuralgia Resources:  Support
    Descriptive info: TNA.. Support Groups.. TNA Newsletter.. TN-L Mailing List.. TN-L Archives.. Web Forums.. Chat Rooms.. International Support.. Personal Stories.. Share Your Story.. Family Friends.. Clinics.. Specialists.. Facial neuralgias such as trigeminal neuralgia are rare conditions.. It is therefore understandable that few resources are available that focus on facial neuralgia victims.. Since the growth of the Internet, more support resources have become available to facial neuralgia patients not only enabling the sharing of up-to-date information but also offering a chance to reach out to other facial neuralgia patients who understand the physical and emotional pain of these disorders.. By joining together in a search for answers, by lending our hearts to those who need our support, we can, with luck, make a positive difference in each others lives.. Listed below are some excellent places to start in finding mutual support.. Organizations.. Organizations.. Trigeminal Neuralgia Association Homepage.. The best and foremost resource for TN and other facial neuralgia victims is the Trigeminal Neuralgia Association (TNA).. TNA is a non-profit organization devoted to helping TN victims and disseminating information about TN.. Although TNA's focus is presently on trigeminal neuralgia, they also provide support for people with other facial neuralgia disorders.. TNA is growing, with international branches in Great Britain (see below) and support groups in Canada, Australia and Israel.. TNA is the place to go if you have any specific questions about doctors, clinics, treatments, or support groups.. Their website is a collection of general information about their organization along with excellent topical papers on TN, articles from their newsletter and listings of their support groups.. UK Trigeminal Neuralgia Association.. The home of the United Kingdom branch of the Trigeminal Neuralgia Association welcomes all TN patients who wish to meet fellow patients and to get information from medical professionals.. Included is important information on surgical treatments for TN and how to decide which, if any, is the best for you.. A helpful regional map to locate TNA contacts in the UK is included.. Trigeminal Neuralgia Association of Canada.. The Canadian branch of the Trigeminal Neuralgia Association is a non-profit, charitable organization serving as an advocate for Trigeminal Neuralgia and other facial pain patients by providing support, information and encouraging research.. TNA Facial Neuralgia Patient Registry.. TNA has established a National Patient Registry to compile information on the history and treatments of facial neuralgia disorders.. TNA survey can be filled out online at:..  ...   TNA publishes a periodic newsletter,.. TN ALERT.. with excellent articles on TN and related facial neuralgias.. Selected articles are online at the TNA website along with selections from the.. TN Alert.. Question and Answe.. r column.. Many of the answers are provided by medical and dental experts.. TN Alert: The TNA Newsletter.. Questions and Answers from TN Alert.. Internet.. Mailing.. Lists.. The Internet has proved to be a godsend for facial neuralgia victims, since it is a very convenient way for such a small and scattered group to communicate.. This is particularly true for people with facial neuralgia disorders, who often find it difficult to talk and are therefore very limited in their communication.. Mailing lists, in which e-mail is circulated among the members, have been found to be a particularly useful forum.. At the moment, there is one mailing list specifically for people with facial neuralgia disorders.. TN-L.. Archives of mail from TN-L members from 1996 through the present are available through a searchable web interface at:.. These archives have very useful information the TN-L members have shared over the years and can be very valuable resource in making connections with people and finding information on treatments, side-effects, specialists etc.. Reading TN-L Mail with Your Web Browser.. An easy way to read TN-L email without having mail sent to your email address.. Other.. Internet resources.. Compiled by Debbie Creps, this site focuses on Trigeminal Neuralgia and is well worth visiting.. Debbie takes a friendly, positive and informative approach in presenting TN information.. Web Forum.. s.. B.. raintalk: Trigeminal Neuralgia.. The Department of Neurology at Massachusetts General Hospital sponsors a Neurology Web Forum which includes a forum specific to Trigeminal Neuralgia.. MGH Neurology Trigeminal Neuralgia Chat Room.. This chat room is provided as a public service by the Department of Neurology at Massachusetts General Hospital.. Occasionally an MGH Neurologist or an invited physician from outside MGH will host a chat session on a particular neurological topic.. You must register to participate.. International.. Support.. NOTE:.. For a complete list of International Support see:.. Trigeminal Neuralgia Association.. Brazil.. Silvia Siqueria.. 55 11 6973 0642.. Email:.. silviadowgan@hotmail.. com.. Canada.. England.. Suomi (Finland).. Suomeksi/In Finnish.. e-mail:.. tn-yhdistys@kolumbus.. fi.. Germany.. Peter Stemer.. 07243 / 63932.. email:.. TN-Kontakt@web.. de.. website.. Israel.. Dr.. Uzi Asher.. 972-4-6952432.. asher@snir.. il.. Trigeminal Neuralgia Association Support.. Sidney, Australia.. Contact:.. Irene Wood.. Phone.. 02 45 796 226.. Email.. :.. tna_sydney@yahoo..

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  • Title: Facial Neuralgia Resources: TN-L Mailing List Information
    Descriptive info: ABOUT TN-L.. USING TN-L.. What is TN-L?.. How to Join TN-L.. Key Information.. How to Unsubscribe.. TN-L Rules and Guidelines.. How to Send Email.. TN-L Goals.. Read Email with.. your Web Browser.. What TN-L is Really all about.. Common TN-L Listserv Commands.. WHAT.. IS.. TN-L?.. At the moment, there is one mailing list, TN-L, specifically for people with facial neuralgia disorders.. TN-L is an electronic mailing list devoted to the discussion of Trigeminal Neuralgia and related facial neuralgia disorders.. All email sent to TN-L is circulated to all members of the TN-L mailing list.. Membership is free and it is.. easy to join.. TN-L is not funded by any source.. It is hosted by the University of Arkansas which graciously allows TN-L to use its computers.. Email from TN-L is archived at.. , a password protected web site where email from TN-L members is accessible.. A search tool makes it easy to find information in the archives.. You must be a member of TN-L to access this website.. KEY.. TN-L INFORMATION.. Host.. University of Arkansas.. List Owner.. Polly Potter.. Managers.. Jet Duddridge.. and Allen Fields.. Moderators.. Jet.. Duddridge and.. Polly Potter.. USEFUL ADDRESSES.. http://facial-neuralgia.. org/support/netiquette.. html.. To send messages to other members on the list.. :.. tn-l@listserv.. uark.. edu.. To send questions/messages to the TN-L List Administrator:.. tn-l-request@listserv.. To change email options, send listserv commands to.. listserv@listserv.. ed.. List of Common TN-L email options and Listserv Commands:.. org/commands.. To access the TN-L Archives.. http://listserv.. edu/archives/tn-l.. TN-L is not affiliated with the Trigeminal Neuralgia Association but enthusiastically supports its goals.. Any advice given on this list regarding diagnosis or treatments etc.. reflects.. ONLY.. the opinion of the individual who posts the message.. You are responsible for your own decisions.. It is known that from time to time, companies may troll the list for addresses for purposes of solicitation.. Therefore, any health-related information you receive should be researched thoroughly.. TN-L, the University of Arkansas, Massachusetts General Hospital and Harvard medical School do not endorse any companies or products.. GOALS.. The goals of TN-L include:.. Providing information, mutual aid, support and encouragement to Trigeminal Neuralgia and related facial pain patients, families and friends.. Reducing the isolation of those affected by the disorder.. Increasing public/professional awareness, visibility and better understanding of trigeminal neuralgia and related conditions.. Providing information about local, regional and international support groups and sources of information.. WHAT.. TN-L IS REALLY ABOUT.. This is Polly, the founder and moderator of TN-L.. With compassion and hope, she guides and helps connect members to each other.. She keeps us on topic and gently reigns us back when we're not.. What better way to capture the heart and soul of TN-L than the words of two TN-L members who made a presentation on TN-L at the Second Annual Trigeminal Neuralgia Conference in November 1998:.. TN-L is a discussion group on the Internet for people who want information and support for Trigeminal Neuralgia and facial pain diseases.. Here you can speak with people who understand what you are feeling.. Our doctors may provide us with medical treatment possibilities  ...   sky are hanging just right, a healing is taking place, something of a religious miracle is being reborn, and many individual lives are saved in a compassionate orgy of sincere caring, sensitive understanding and empathy in another person's plight.. This is the listserv novelist at work, at its best, scaling new heights at once unfamiliar and then perfectly familiar once again.. And to get an even better idea of how special TN-L is, view the.. TN-L Slide Show.. that was presented at the 1998 TNA conference:.. JOIN.. ING TN-L.. Send an email message to.. with this in the body of the text:.. sub TN-L.. your name.. For example, Jane Doe would send.. sub TN-L Jane Doe.. After you receive an email from TN-L acknowledging that you've been added to the TN-L mailing list, you will begin receiving any email sent by members of the list.. If for some reason you have problems joining TN-L, contact Polly Potter at.. ppotter@uark.. SENDING.. EMAIL.. Send email to:.. Please note that the email address for sending mail to the group is different from the address for joining the list.. When you create a.. new.. message (not replying to a message), you should specify a subject to describe what your message is about, much like you do in an email message.. To make it easier for readers to decided whether to read your message, it's a good idea to keep the subject line short and use key words, for example:.. Subject: Gamma Knife - Side-effects?.. Often people want to discuss non-tn related things.. it's natural as people become online friends.. Some members prefer to get only email about facial neuralgia related topics.. To make it easier to sort out which messages are Off-topic, use the keyword.. CHAT:.. as the first word in the subject line.. The topic keyword of.. CHAT:.. must end with a colon, followed by a space, before adding your own particular subject keywords.. For example:.. Subject: CHAT: My Day at the Beach.. Members who prefer not to read CHAT email can send a command to exclude any email that begins with.. Common TN-L Listserv Commands: Chat.. UNSUBSCRIBING.. FROM TN-L.. signoff TN-L.. AN EASY.. WAY TO READ TN-L EMAIL USING YOUR WEB BROWSER.. For some people, the volume of daily email from the TN-L mailing list can be overwhelming.. Others don't like the risks of getting a computer virus through email.. An easy solution is set your TN-L membership so that no email is sent directly to you and to use your Internet browser (e.. g.. Netscape, Internet Explorer) to read TN-L email on the TN-L Archives.. Here are Instructions on how to get started.. ARCHIVES.. , a password protected web site where all mail from TN-L members from 1996 is available only to TN-L members through a searchable web interface.. These archives contain valuable information that TN-L members have shared over the years and can be an excellent resource in making connections with people and finding information on treatments, side-effects, specialists etc.. The TN-L Archives can be accessed at:.. Please e-mail comments / questions to..

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  • Title: Facial Neuralgia Resources:  True Stories
    Descriptive info: Mailing List.. I hate this disease.. I hate what it is doing to someone I love and I hate what it is doing to the family.. I hate being helpless in the face of someone's pain.. I hate it.. -anonymous SO.. The following stories are written by people with facial neuralgias and their family members and tell of the tragedies and triumphs of having to deal with these terrible disorders.. Current Stories.. (1/31/2007).. 2006.. 2005..  ...   story similar to your own.. It's important to keep in mind that this is just a small window into treatment experiences.. Treatments vary greatly and what works for someone may not work for another.. Including your story.. It is so important to learn how others survive this terrible disease.. If you have a facial neuralgia such as Trigeminal Neuralgia, or know someone who does, please consider sharing your experiences.. Tell Your Story.. Top of Page..

    Original link path: /support/tnstory.html
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  • Archived pages: 235