BIG NEWS RESEARCH UPDATE: As of today’s date 88 DNA gene samples have been collected (of the 100 needed) from TN1 (Classical TN) patients at Oregon Health and Science University and are on the way to begin genetic testing in New Jersey to find the “problem genes.” DNA collection has been approved at our University of Illinois-Chicago Center – one of eight additional centers to gather 500 samples needed. We will keep you informed as more DNA Collection Centers are established.
Some Center’s prefer contacting prospective patients inviting them to participate in the study. Some Centers will welcome volunteers. Many have contacted the Foundation requesting information regarding participation and we are keeping a log of names and contact information as we receive them. If you have an interest in volunteering please contact Pam@facingfacialpain.org. We will need your name, address, diagnosis (must have/have had TN1 or Classical TN), place of diagnosis, your email address, and telephone number. Please do not contact the Centers directly. Your information will be forwarded to the Centers and if a Center is interested in you participating, they will contact you.
GET TO KNOW MORE ABOUT ONE OF THE THREE PRINCIPLE INVESTIGATORS OF OUR GENE RESEARCH PROJECT: Dr. Kim Burchiel’s interview by award-winning NY Times Journalist Mervyn Rothstein currently headlines our WebNewsPaper at http://www.faciangfacialpain.org. Visit the WebNewsPaper today to read more on why Dr. Burchiel does what he does and what he expects from the future of TN and gene therapy.
The Facial Pain Research Foundation
I have this rare form of the disease, as the pain and severity never cease. Anything touching the left side of my face, whether it is eating, the wind or smiling, it becomes agonizing. Coping with cold weather make the pain unbearable, I can not go outside without a sweat ban/ or hat on my head.
During the past 2 years, I have underwent several complementary treatments and tried over 7 different medications. I changed my diet, eliminating gluten, sugar, and caffeine. I thought about killing myself on a daily bases for a year, until I was able to get on the right medication called oxcarbazepine, it was a miracle pill for me and still is 6 months down the road. I still fear that the constant pain will come back some day, if this medication stops working.
I want a cure, like us all… With the help of getting the word out in public mainstream, more funding can come to the scientist that are working on the cure. God bless all that has to suffer, I understand your pain and a cure is right around the corner. Please hold on, I know it will happen in this century.
Facial Pain Research Foundation aims to turn a page in history by finding a cure for the world’s most excruciating pain.
Finding a cure for trigeminal neuralgia, the most painful disorder known to humans, is the mission of The Facial Pain Research Foundation. Its founders aim to reach the goal within the decade of 2011-2020, while also developing therapies to permanently stop other nerve-generated facial pains and diseases.
The Foundation is the brainchild of seven professionals across the United States, who are creating the first international force of scientists to work together to cure an ancient, but poorly understood disease. Finding a cure will restore pain-free life to millions of men, women and children around the world, who are stricken by repeated lightning-like shocks of facial pain, the hallmark of trigeminal neuralgia. A simple cool breeze across the face, a slight touch or even a kiss on the cheek can trigger shooting pains that drive victims to their knees and may last a lifetime.
Trigeminal neuralgia was first identified in the 11th century, yet it remains frequently misdiagnosed and inappropriately treated, in many cases resistant to the best available therapies, and tragically linked to depression, fear, fatigue and suicide. The pain has a bizarre “hit and run” behavior; it strikes near the eyes, nose, lips, ears or teeth, sometimes disappears for days, months or longer, then returns. The pain seems to come out of nowhere with a stabbing intensity that stops people in their tracks and draws full attention to the need to find relief, very fast.
To conquer the problem within ten years, the Foundation has formed an international consortium of eminent scientists, starting at the University of Florida’s McKnight Brain Institute and the University of California San Francisco, to conduct studies aimed at translation from laboratory to patient.
Participating scientists will report outcomes at Foundation conferences and public forums. In the process, they will expand public awareness of what has been a global silent epidemic of facial pain.
“Some say it takes years and years to find a cure for a disease as complicated and unpredictable as trigeminal neuralgia, but America put a man on the moon in less than a decade after our President called for it to be done,” said Myron Hirsch of Naples, Fl., a founding trustee and former president of the TNA-Facial Pain Association. (In 1962, John F. Kennedy announced,)
‘We choose to go to the moon in this decade,’ and seven years later, on July 20, 1969, Neil Armstrong walked the face of the moon.”
While Hirsch does not compare curing nerve damage to putting man on the moon, he expresses confidence that a cure can be achieved in 10 years by a united force of premier scientists around the world working collaboratively toward the goal.
Major attention will be focused on the trigeminal (three-part) nerve that energizes facial feeling and functions, and on how the nerve and its protective coating, known as myelin, are damaged in ways that lead to pain.
“Our search for a cure is preceded by a long circuitous trail of medical and surgical advancements that have fallen short of permanently stopping the pain without medications or complications,” said Michael Pasternak, Ph.D., of Gainesville, FL., a founding trustee and former president of the TNA-Facial Pain Association. “We must fix this nerve for those suffering now, and for future generations.”
Pasternak, whose terrorizing trigeminal neuralgia pain was halted after microvascular decompression surgery in 1992, said only 50 to 75 percent of individuals with the typical textbook type of TN gain long-lasting pain relief through surgery, medications or non-conventional therapies such as acupuncture and chiropractic adjustments.
Many of those who become pain – free after surgery suffer recurrent pain months or years later, indicating new damage in other parts of the nerve!
Neurosurgeon Albert Rhoton Jr., M.D., a Foundation trustee who treated more than 3,000 patients with trigeminal neuralgia before retiring from 40 years of surgical practice at the University of Florida, says it is time to find a cure. Rhoton, who still jets around the world to aid the teaching of neurosurgeons, said,
“The past (regarding trigeminal neuralgia) has been filled with medicine, often toxic medicine, and risky surgery with failures and recurrences. This is the first time in my lifetime that a group is really going for a cure.”
Poor public awareness of trigeminal neuralgia has been attributed to the fact the disease is rarely visible and is not fatal.
Unlike cancer and heart attack, which claim many lives, people with TN suffer pain that progressively worsens and attacks more often. Many patients abandon their careers, social life and recreation, and isolate themselves at home.
“Over the last 20 years, we have rescued thousands of patients from the obscurity of trigeminal neuralgia through education, outreach and personal contact,” said Roger Levy, a founding trustee and immediate past chairman of the board of TNA-The Facial Pain Association.
“However, in that period we have seen no major breakthrough in treatment, let alone a cure.
Through the Foundation, we will drive the direction of research, and work to increase the pace at which discoveries are reported and shared among lab scientists, clinicians and patients.”
The first projects undertaken through the scientific consortium are directed by two nationally known, award-winning scientists dedicated to pain research.
Neuroscience Professor Lucia Notterpek, Ph.D., at the University of Florida’s McKnight Brain Institute and Neurobiologist/Anatomist Allan Basbaum, Ph.D. at the University of California San Francisco.
Notterpek seeks to develop genetically altered mice as the first validated animal model of human neuropathic facial pain—a model long needed for basic studies on pain mechanisms and the preclinical testing of new treatments.
She and Andrew Ahn, Ph.D., a neurologist and facial pain expert, are treating mice with new pharmaceutical molecules designed to halt nerve deterioration, and are measuring their effectiveness in reducing responses to pain stimuli.
Eminent neuroscientist Douglas K. Anderson, Ph.D., former Director of the McKnight Brain Institute and trustee of the Foundation says.
“The fundamental problem we confront in research is why the trigeminal nerve goes bonkers, why excellent corrective surgery ends the pain for some patients, but not for others, why the best available pain-relieving medications help some and not others, and why many patients gain no lasting benefit from any conventional or alternative therapy.”
Anderson said he is optimistic that a breakthrough in the treatment of trigeminal neuralgia, the most extreme facial pain disorder, will reveal therapeutic approaches worth evaluating in the treatment of other nerve diseases, which might include multiple sclerosis.
At UCSF, Dr. Allan Basbaum’s studies in mice are aimed at solving one known cause of facial pain. The apparent loss of chemical mediators that normally inhibit the transmission of pain signals to the brain. In a unique approach, he is transplanting nerve cells that secrete these inhibitory chemicals into the trigeminal area of hyperactivity. The goals are to introduce these healthy cells into the areas of the brain influenced by nerve damage, and to have them fully accepted as an integral part of normal nerve circuitry where they will be expected to normalize the inhibition of pain signals traveling to the brain.
London physician Joanna Zakrzewska, M.D., who directs the largest orofacial pain clinic in the United Kingdom and is studying the epidemiology of neuropathic facial pain and how to measure pain more precisely, is the Foundation’s international neuroscience coordinator.
She is a professor of pain in relation to oral medicine at the Barts and the London Queen Mary’s School of Medicine and Dentistry at the University of London. She is author of four books, including INSIGHTS: Facts and Stories Behind Trigeminal Neuralgia for consumers, and Orofacial Pain, a new guidebook for health-care professionals.
The Foundation’s founders share a history of close encounters with facial pain or with patients in pain, and share a passion for stopping the pain. Together, they bring to the board room some 200 years of accomplishments in business, medical science, law, writing, public relations and marketing, teaching and publishing.
In addition to Anderson, Rhoton, Pasternak, Hirsch and Levy, the trustees include Suzanne N. Grenell, a creative writer, poet and motivational speaker in Scottsdale AZ, and Jay Winer, independent public relations/marketing consultant in Asheville, N.C.
Copyright © 2013 The Facial Pain Research Foundation. All Rights Reserved.
Unlocking DNA to Find A Cure
For Trigeminal Neuralgia
Imagine unlocking the mysteries of DNA that are so extraordinary and then applying those learning’s to finding a cure for the worst pain known to humankind. Our DNA functions as the building blocks, or blue prints of life. We all carry these building blocks within every cell of our body.
For many years patients have asked themselves and their doctors “why me?…Why did I get this awful painful condition called trigeminal neuralgia?…Why do I suffer so and others don’t understand…why do I feel like I could simply die?” The Facial Pain Research Foundation’s first international research project to find a cure is underway and it seeks to discover the answers to “Why Me?” and lead scientists to developing a cure.
The Foundation’s Trustees are excited to announce their fourth research project entitled “In Search of A Cure…Finding The Genes That Predispose to Trigeminal Neuralgia”. It’s goal is to identify the genes that make people susceptible to TN or cause the pain and then move toward prevention and cure.
Dr. Douglas Anderson, Foundation Trustee and Director of Research Programs, first presented the concept that there was likely a genetic basis for TN at the 2004 TNA National Conference in Orlando. He always found it odd that the anatomy of compressed nerves/lesions were seen in a significant number of individuals but only a few had TN. He always harbored the idea of identifying a genetic profile in TN patients that would lead to ending the painful condition. Anderson says “If there is a history of a member of your family having TN, other members of your family could be screened and hopefully the condition could be prevented by having the genetic pattern altered so the pain will not develop.”
Dr. Joanna Zakrzewska of London England, the Foundation’s International Research Coordinator, asked Dr. Marshall Devor in March 2012 to prepare a research project proposal to seek a cure for TN and present it to the Foundation. After seven months, the researchers and the Foundation Trustees have approved the research project and are excited about moving forward. The three Principal Investigators of the project are Dr. Marshall Devor, Dr. Kim Burchiel and Dr. Ze’ve Seltzer.
The team of international scientists is led by Principal Investigator pain research pioneer Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel. The award winning scientist has had an outstanding career in pain research. He has contributed an outstanding body of research, authoring several hundred papers over 40 years and has been been described as one of those “who view excellence as a way of life and the fulfillment of human potential as essential to creating a better world for future generations.”
Dr. Kim Burchiel is the Chairman of the Department of Neurological Surgery at the Oregon Health & Science University in Portland, Oregon. Burchiel has been a long time member of the TNA Medical Advisory Committee and performed hundreds of TN surgeries. A successful researcher, he has been a national leader in the treatment of orofacial pains including TN. The first step of the research project, phenotyping and DNA collection, will be the responsibility of Professor Burchiel at OHSU. He is a leading authority in the phenotyping of facial pain conditions and author of the most widely accepted TN classification scheme. Dr. Burchiel has said: “this research project could be the most important pain study ever attempted” and he is very hopeful that it will lead to a cure for TN and related neuropathic pain.
Dr. Ze’ev Seltzer, Professor of Genetics at The University of Toronto, Canada is also an award winning scientist. He has dedicated his career to the study of pain. Seltzer says “ I am looking forward to be a Co-Principal Investigator in the TN project, bringing 35 years of studying the neurobiology of pain.” Having had many competitive grants and honors he has an outstanding track record of productivity in the field of pain and pain genetics. Seltzer also says “The goal to find a cure is achievable…our best salvation may come from genetics”.
Consultants to the research project include: Dr. Joanna Zakrzewska, Eastman Dental Hospital, London, England…Professor Ariel Darvasi and Dr. Sagiv Shifman, Hebrew University of Jerusalem, Israel…and Dr. Scott Diehl, University of Medicine and Dentistry, New Jersey.
If you have any questions or comments please address them to the Foundation at: firstname.lastname@example.org
I believe the real fear has to do with developing “Anesthesia Dolorosa”, which is a permanent numbness to the face, hearing loss, and eyes issues on the side of the face with the TN. Yes, it is a toss-up, but who wants to go into a surgery and come out worst off. Not me, and a lot of other people agree.
It occurs after 1–4% of peripheral surgery for trigeminal neuralgia (TN) No effective medical therapy has yet been found to stop this pain.
The day is coming, in fact it is right around the corner, within 8 years there is a predicated cure with stem cells. Read online at facing facial pain. org on Nov. 16, 2012 for the big announcement on this discovery.
With job loss on the rise and many people who can not afford medical insurance on their own, yet don’t qualify for state or federal assistance, there are many who will skip medical treatment to save money. Your health is certainly not something you can take likely.
Here are 6 places you can check out when you need medical help but don’t have the insurance to cover it:
Your Family Doctor
Many individuals do not realize it but you can still see your family physician without insurance and be able to afford it. It may take some gumption but approach your doctor about a reduction in rates for services because you are willing to pay cash. Many doctors are happy to work with you because they will likely get more money and get it in a faster time period than when having to deal with insurance or Medicare.
Health Care Centers
These are not the “free clinics” you might have in your community but there are health care centers regulated and sponsored by the federal government. These centers provide primary, preventative and dental services to people of all ages, based on a sliding payment scale. This means you pay for services based on how much income you make. Check out findahealthcenter.hrsa.gov to find a center in your area.
Because Planned Parenthood centers often receive state funding and public donations, the fees for services may be even lower than normal, but you will typically you’ll be charged what you can afford, based on your income. Women can receive family planning services, plus other treatment and testing for STD’s, pap tests, breast exams, and birth control for little or no cost. Be sure to call first to discuss your finances if you do not have insurance. You’ll be able to get a ball park figure for how much it will cost prior to going to your appointment. ** UPDATE: An astute reader pointed out that PP is not only for women and men are welcome to be sure their reproductive and overall health is on track.**
These are the walk-in health centers located in major retail shopping chains such as pharmacies and Wal-Mart. Typically, these clinics are staffed by RN practitioners and physician’s assistants who can treat and prescribe medications for general colds, flu, and infections. They can also help treat and do preventative check-ups for conditions such as diabetes and high blood pressure. The costs will vary from clinic to clinic and depends on your illness or treatment plan. Some places will offer “a la carte” services and some will charge a “flat-rate fee” for services rendered.
Many community groups, civic organizations, and local hospitals will offer regular free clinics for specific screenings of disease such as cancer, diabetes, heart problems, high blood pressure, and other conditions. Check in your local news paper or group newsletter to see what is coming up in you area and take advantage of the free (or at least discounted) health services. Early detection of many diseases can certainly save your life.
If you have painful TN attack or any other illness. You can go to any ER/Hospital and be seen, in addition ask for a social worker from the hospital to come and speak to you, to help you find some type of medical assistance with sliding scale and referrals to a free client in your area.
The goal is to re-position the weight of your head over the center of your neck as close as possible. This is done to reduce structural/mechanical imbalance, which is causing nerve compression, body imbalance and wear and tear
This repositioning is intended to reactivate blocked or altered transmission of nerve impulses (healing messages) from the brain to the body so your body’s natural healing process can begin. The calculations from mathematical x-ray analysis provide knowledge of the exact position of the Atlas bone.