26Patient Representative. 
An essential component of TNA’s services is our Patient Representative, who is on call answering thousands of phone calls and email messages regarding TN and related facial pain conditions from patients and their families. This direct, personal and in-depth support serves as a life-line for those who have been unable to find the information or relief they need.   

With a part-time Patient Representative serving in this role, TNA was unable to effectively respond to the greatly increased volume of calls and emails from patients and family members.

 Incoming calls from patients to the Patient Representative increased by 25% during 2003. The distribution of information packets to patients increased at the same rate during this period. Further, incoming emails from such patients to the Patient Representative nearly doubled: from 7,240 to 13,211. New patients added to the TNA database totaled 3,653 during 2003. 

As a result of this increase, TNA recruited a full-time professional to serve in this capacity.  The new Patient Representative, is trained as a nurse and a TN patient. TN patient calls and emails will continue to increase with this added service and support.   

28 Jennifer Clough, TN Patient - Seattle, Washington

Her Personal Story

Description of Pain, Emotions . . .

    While brushing my teeth one morning, a bolt of lightning exploded in my face - I screamed and threw my electric toothbrush through a window - the pain was profoundly piercing and pulsating and didn't stop for what seemed like days, when in fact it was probably mere seconds.

    I was terrified that the pain would somehow return.  I stood and wept - all alone - motionless.  My sobbing brought more throbs of pain - out of nowhere.  Every movement brought a new phase of disorder to the right side of my face.  I clutched my mouth wanting to soften the coming blows.  From everyone's view - it would appear that I had a toothache.

Road to Proper Diagnosis . . .

    Like the Beatles' tune - it was "a long and winding road" - and I was driving alone!  My dentist suspected endodontic treatment was in order - so off I went for an unknown specialist for three root canals in the same number of days!  No fun - and still the pain persisted.  The Vicodin was helping me not think about it - but the prescriptions lapsed and the pain didn't....and no more meds for me - they were too addictive and this really isn't a dental problem anymore!  But then, what is it????  Any mouth movement was brutal - which limited the basics such as talking, chewing, coughing, sneezing - even the slightest touch on the cheek was unbearable.  I would end up in the fetal position just sobbing and holding my breath until the pain stopped spiking.

    And then came my sweet friend, Barb, who could tell just by looking at me that my pain was very real .... 8Hmmm, she thought, her father in law had similar pain --- off and on for years and years - and she remembered what this mystery pain was called - Trigeminal Neuralgia.

    BINGO - off to the internet I go and before I could dry the tears of combined joy and pain - I have VOLUMES OF PAPER describing my painful episodes to the proverbial T.  And what made this finding even better was the credibility I was able to achieve that yes, my pain is painfully real (all puns intended), and no, I wasn't going crazy imagining this situation.

    OK everybody - now fix it!  Make me better.  No such luck....I phoned my physician's office sobbing in pain pleading for someone to see me and see me now. "I can't live this way - somebody has to do someone or I don't know what I'll do!"  That edge of panic got me into the system - so off I go to a total stranger/an on-call doc (my physician wasn't working this particular day) with my reams of paperwork and bloodshot eyes from my crying bouts.  I must have looked horrible because I'd never received such immediate treatment in all of the years I had been using this particular HMO.  And the new guy was patient and let me blabber on and on and kept repeating - just give me something to make this pain stop!!!!  And he did - something that absorbed the pain (Tegretol) - and my brain as well.  I instantly became useless to anyone.  I'd be sitting at my desk at work, the phone would ring and I'd say "hello" without picking up the phone.  It took many phone calls and much begging to have people adjust the pills I'd been given - and I even started playing with the tablets myself - making them smaller or taking more than I was prescribed when the pain picked up.

Impact on Family and Friends . . .

    It was hard for people to really understand what I was experiencing.  The worst thing of all was one day when I was holding my 9 month old granddaughter, Olivia.  She innocently touched my cheek - and of course, the electronic shock pain kicked in so strongly and abruptly that I almost dropped this most precious person in my life. Oh - Gramma needs much help and needs it now!!!!!  When I was able to state these stories to those attempting care, it gave a life to my crisis.  I was eventually turned over to a neurologist who has attributed this horror as an extension to my multiple sclerosis diagnosis - a pitiful tag I've been carrying around with me for the past 20 years.  I say pitiful since it's not a disease that's curable - nor is it one that has any sensible pattern to it.  You just wake up one morning unable to walk or see - and why, because you have MS! And now this MS has brought me this most hideous of maladies, trigeminal neuralgia.

    I photocopied everything I got on this condition and sent it to everyone I knew so they would know what I was living with - or at least trying to live with.  As they read what I offered, they all agreed it was the "yuckiest" thing they'd heard of and "How can you stand it?"  My son wanted to know if the condition was hereditary.....good question, and I told him I hoped not.  And then I bought the book, The World's Worst Pain. The title tells it all.....I wanted to know what I was in for and also wanted others to know about my physical/emotional struggle.

    These past 2 painfully long years have been a living nightmare - in every category.  I received the worst personnel evaluation in my working career of 32 years - I was asked if I'd been tested for dyslexia and do I have any idea how many mistakes I've been making?  And is there something wrong with me????  The medication has prompted continual visits to the doctor's labs for blood draws to see if the many meds I'm taking every day are trashing my blood system.  I live in constant fear of having to repeat the horror of two years ago - and I'd stopped using the electric toothbrush because of the horrid memory of what happened while I was using it.  I have many letters from my physician and neurologist in my personnel file trying to explain the down period in my work life.  I have special instructions in my various dental files about how to give dental care with a TN patient - it requires special Novocain injections.  My daily medication keeps me from enjoying any alcohol . . . even grapefruit juice!

    The local support group that I found online is fabulous.  What a treat to be able to sit in a group of total strangers and know that I'm not alone.  We all have some type of debilitating facial pain and we all know what each is experiencing.  That's been the biggest gift to me in this whole mess.  Patient, kind and lovely people who feel my pain. Literally.

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. 

30 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.

30  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.