Face Pain Info Pages - Print Version

Face Pain Information: 

Diagnosis and Treatment of Chronic Trigeminal Neuropathic Pain

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Page Leader: Richard A. "Red" Lawhern, Ph.D., Resident Research Analyst  

Assisted by Stefanie Poulton and Gloria Erickson, Moderators

Format editing by Susie Margaret Ross

 

Information Last Updated: April 30,  2011

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Welcome

This page is titled "Facial Pain Information," and that's what it's about -- helping members to find authoritative information, research reports, or practice standards that apply to chronic facial pain conditions.  The version you are now reading is intended to facilitate print-out, for readers who don't have time -- or perhaps sufficient attention span -- to cope with a small book (about 70 type written pages) all in one on-line dose.

This information will address both forms of Trigeminal Neuralgia (TN) as well as other types of neuropathic facial pain where symptoms can overlap those of TN.   There is also a companion article on the site that adds information on "Coping With Crisis".

You will find the following subjects on this page. If you wish to read individual sections of this project, then click on the title in the Index. The link should bring up a short "Section" page, with links back to the Master Index at the top and bottom.  Otherwise, feel free to page down through this large file.

 

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Master Facial Pain Information Index:

About This Page and the Authors

What Can I Do Here?

What Kind of Facial Pain Do I (Possibly) Have?

How Do I Find a Knowledgeable Doctor to Assess and Treat My Pain?

How Do I Develop a Constructive Doctor-Patient Relationship?

Are There Internet Resources for Free and Low-Cost Care?

What Can I Expect in a First Neurologist Appointment?

What Role Is Played by an MRI in Diagnosis of Facial Pain?

Is Trigeminal Neuralgia Caused by Dental Work?

What If I Need Dental Work?

Is Trigeminal Neuralgia Caused by Whiplash Injury?

Treatments for Typical and Atypical Trigeminal Neuralgia - Medication

  Treatments for Typical and Atypical Trigeminal Neuralgia - Surgery

Treatments for Typical and Atypical Trigeminal Neuralgia - Alternative Medicine

Side Effects of Medication and Surgery

Special Concerns and Problems of Atypical TN Patients

Could I Have Temporomandibular Joint Disorder?

Do Opioid Drugs Work for Chronic Facial Pain, and Are They Addictive?

Is "Atypical Facial Pain" a Real Medical Condition?

Is "Psychogenic Pain" a Real Medical Condition?

What Should I Do If a Medical Doctor Refers Me to a Psychiatrist for Evaluation?

What Can I Do to Help Myself Live Better Even While I'm In Pain?

How Do I Help My Family to Understand?

How Do I Submit and Support a Disability Claim?

Research References

 

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About This Page and the Authors:

The idea for this page originated with two of our site moderators -- Stefanie Poulton (Stef) and Gloria Erickson ("G-Force"). These two wanted to gather some of my (Red Lawhern's) postings to various discussion threads on Living with TN, in a central archive where they wouldn't get lost and where members could access them conveniently. They also volunteered to help put this archive together under the tab that brought you here. Susie Margaret Ross, a third friend, volunteered gobs of time to help bring the formats of this piece closer to print media publication standards. 

 

These contributors should be credited for their time, experience, and effort on your behalf, the reader. As principal author, I should be taken to task for any errors of fact or attitude that I may have included in the material that follows. Feel free to point out my goofs in the comment window at the bottom of the page. We'll fix mistakes. Give us -- and yourself -- a little time, please.  The print version of this article is over 60 type written pages long.

 

When reading about health and medical issues or questions, it is appropriate to know who has written what you're reading -- and whether or not they have sufficient knowledge or experience to be credible. Stef and G-Force will be well known to many members on our site from their many supportive postings and from their work as moderators. They are both pain patients and competent readers of the medical literature But unlike them, your page lead author is not a pain patient -- only the spouse of someone who is a patient. In my case, the following answer to the question is expanded from an article on my personal website, "Classification and Treatment of Chronic Face Pain."

 

[Clicking on this link will open another browser page. When you've read as much as you want, just close that tab and come on back. The intention here is NOT to divert you from Living with TN.  This is a place where you can learn a great deal and benefit from interacting with other patients.]

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Bio for Richard A. "Red" Lawhern, Ph.D.

Although my hair was once red, what little hair I have left isn't red any more. I am a longtime patient advocate and Web author, although my doctorate (UCLA 1976) is in engineering systems, not medicine.  I'm a technically trained medical layman who reads a huge volume of medical literature and remembers a lot of it.  You can think of me as a sort of biological learning machine working on your behalf.

 

I began researching chronic neurological facial pain in 1996, when my spouse presented with pain diagnosed as bilateral Vaso-Glossopharyngeal and Trigeminal Neuralgia. I served the US Trigeminal Neuralgia Association (TNA) as Webmaster and a member of its Board of Directors in the late 1990s, co-authored the design of the TNA National Patient Survey in 2000-2001, and contributed to a more recent version still (in July 2011) being vetted by the TNA Medical Advisory Board.

 

I am no longer affiliated with TNA management or site administration. Nothing on this page has been reviewed or approved by them or anybody else, other than by my co-leaders, Stef and G-Force. Keep in mind also that the content of this page is edited from my own research and postings and those of other subscribers. I believe that the content reflects "informed" opinions, but it may not reflect the views of other site moderators or of the Owners. The Owners are not responsible or legally liable for the accuracy of information here.

 

I currently provide information research and referral support to chronic facial pain patients through TNA Connect, the TNA Network, LivingwithTN.org, and a Neurological Disorders support group at WebMD. I have done similar volunteer work in the past at About.com. My 2001 redesign of the TNA home page was acknowledged by an Aesculapius Award of Excellence in Health Communications from the Health Improvement Institute. I am also credited as a co-author of the Internet Resources appendix of “Striking Back -- the Trigeminal Neuralgia Handbook” (first edition).

 

In the 16+ years of my work in chronic pain patient advocacy and support, I have corresponded by e-mail with possibly 3,000 patients, family members, and physicians around the world. It would probably be fair to say that I've talked -- as a layman -- with more chronic facial pain patients than the average neurologist sees in a 40-year career of practice.

 

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What Can I Do Here?

Well ... to tell you the truth, we're still figuring that out (and I'm not kidding!). This page is a work in progress. As a minimum, however, you can come here to see if the resident research analyst at Living with TN has written anything that applies directly to a question of concern to you. Stef, G-Force, and I have tried to impose thoughtful organization on commonly asked questions that we see in various discussions elsewhere on the site, and to offer at least one set of what we hope are well-grounded answers to some of those questions.

 

Our Master Index covers a lot of territory. Many of these questions have come up naturally in other discussions on the site -- and many experienced and compassionate patients or caregivers have responded to them. The page content here will include responses that I (Red) have offered on the site that my page co-leaders considered pretty good and wanted to keep visible. This in no way invalidates the input or support of other members.

 

If readers wish to leave comments on this “Facial Pain Information” page, then please page down to the box at the bottom. If things start getting cluttered, I may remove postings as I respond to them with new material on the page.

 

     A Note of Caution

In the interests of the welfare of the reader, please realize that any layman can draw mistaken conclusions from the medico-babble that passes for vocabulary in many journal articles. I'm not a doctor of medicine (even though they sometimes screw up too!), and I cannot diagnose you. I can only compare what you tell me with reports I've read in the medical literature and heard from patients.

 

Rather than attempting to tell you "what you have," I might say instead that if I were advising a close family member or friend on the same questions, then I'd suggest that you "discuss so-and-so" with your present doctors or with someone else who has better training. RARELY, I might suggest that your doctor needs his attitude adjusted with a steel-toed boot, but I'll try not to be gratuitously unkind to anybody, even if I feel grumpy over a doctor's apparent insensitivity or incompetence.  As we used to say in California, "stuff happens."

 

Before you act upon anything that I suggest here or elsewhere, you'll first need to test the information that I offer against the seasoned knowledge of someone who IS a doctor of medicine. Stef and Gloria have gently beaten me about the head and shoulders on a few things, to get most of this right, but they're not perfect either.

 

Go in Peace and Power,

Richard. A. "Red" Lawhern, Ph.D., Resident Research Analyst, Living with TN

Stefanie Poulton, Moderator

Gloria Erickson, Moderator

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What Kind of Facial Pain Do I (Possibly) Have?

This is a subject about which thick books have been written, most often for an audience of doctors but also a few for pain patients. "Striking Back -- the Trigeminal Neuralgia Handbook" is one of the better examples of the latter. This subject is also one about which I have written elsewhere at less than book length. My present understanding and opinions on the subject are captured in a long article on my personal website: "Classification and Treatment of Chronic Face Pain."  A lot of the material on this page is adapted from that source.

 

Many of those who read this page will already have received a diagnosis of "Trigeminal Neuralgia" in either its "Typical" or "Atypical" form, or both. Other visitors may have heard the words but still feel themselves to be groping in the dark concerning what the words mean for them. This section of the "Facial Pain Information" page won't attempt to tell you exactly "what you have."  But I hope we can get you started with a few basic facts that will help you talk with your doctor about what you have.

 

I personally characterize facial pain in four broad categories (professionals argue over taxonomy frequently, so don't be too surprised to see other systems in use when you read journal articles):

•  Trigeminal Neuralgia and Facial Neuropathy (pain in any of the three major subdivisions of the distribution of the trigeminal nerve, due to inflammation or mechanical damage specific to that nerve)
•  Other Facial and Skull Neuropathies (pain in other nerves that branch out from the same region of the brainstem and cervical spine, serving the face and head)
•  Symptomatic Facial Neuropathy (trigeminal pain that is a symptom of other discrete disorders such as Multiple Sclerosis or an Arteriovenous Malformation on the Optic Nerve)
•  Non-Neuropathic Facial Pain (caused by mechanical or structural problems such as head trauma or bite issues)

 

The reason I use these categories is that treatment choices tend to be different between them. Thus thinking about the categories might help pain patients to ask their doctors questions such as, "Should I be tried on treatment so-and-so?" when that treatment is commonly offered for a category of pain that you recognize in yourself.

 

Category 1 (Trigeminal Neuralgia and Facial Neuropathy):

 

•  Under Category 1, Trigeminal Neuralgia and Facial Neuropathy, this website provides a local page that summarizes the character of two principal subtypes of pain. To review that material, select "Type 1 and Type 2 Trigeminal Neuralgia Symptoms."

 

 

Category 2  (Other Facial and Skull Neuropathies) may include:

•  Neuralgia of the Greater or Lesser Occipital Nerves (serving the back of the head and upper neck)
•  Hemifacial Spasm (involuntary contractions of facial muscles on one side\
•  Vaso-Glossopharyngeal Neuralgia (affecting the ears, throat, palate, and frontal neck near the jawline)
•  Geniculate Neuralgia (experienced as ice pick pain deep in the ear)

 

•  Neuralgias of the Vagus Nerve (sometimes associated with heart arrhythmia and fainting spells)

 

 Category 3 (Symptomatic Facial Neuropathy) may be caused by:

•  Arterio-veinous Malformations (AVM, sometimes associated with deep eye pain and vision issues)
• Atypical Odontalgia ("Unusual Tooth Pain"  -- shifting pain in the teeth, similar to that created by abscess, but without radiological evidence)
•  De-afferentiation Pain (created by surgeries that partially or fully sever a nerve)
•  Facial Nerve Damage (due to dental or sinus infection or surgery)
•  Pain Due to Pressure on the Trigeminal Nerve from

·         Acoustic Neuroma

·         Arachnoiditis

·         Arterio-Veinous Malformation

·         Brain Aneurysm

·         Brain Tumors

·         Cysts

·         Calcium Deposits

·         Meningioma

 

• Post-Herpetic Neuralgia (facial pain from the re-emergence of the Herpes Zoster virus in Shingles)
•  Symptomatic Trigeminal Pain (due to Multiple Sclerosis plaques on the nerves, or other mechanical damage to the nerve)

 

Category 4 (Non-Neuropathic Facial Pain) includes pain associated with discrete structural problems and disorders of the facial tendons, bones, sinus cavities, and jaw joint:

•  Bell's Palsy (weakening or paralysis of facial muscles due to trauma to the 7th cranial nerve)
•  Eagle Syndrome (transformation of certain facial tendons into bone)
•  Facial Tendinitis (inflammation of facial tendons)
•  Pain Due to Blunt-Force Trauma (blows to the face or head)
•  Temporomandibular Joint (TMJ) Problems (discussed further below)

 

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When you go to a physician to have your facial pain evaluated or treated, the doctor will ask you questions intended to help distinguish between the disorders identified above. The more you know before seeing a doctor, the better chance you have for getting an accurate diagnosis and appropriate treatment plan.

 

Likewise, AFTER you've been seen by somebody who behaved like an insensitive jackass, knowing as much as you can may help the NEXT doctor you interview to do a better job for you.

 

As a last comment and information source in the matter of "what kind of pain do I have", a lot of the question may have to do with where in your face and head you experience your pain.  The trigeminal nerve system is rather complex.  It may help in your discussions with a doctor, if you know how this system is medically divided up.  One of our members here at Living With TN (SF Bob) has posted an excellent resource for learning about the branches and regions of the trigeminal system.  You will find a great many medical illustrations of the trigeminal system at the following link:

 

Trigeminal Neuralgia Illustrations

 

And thanks to Bob.

 

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How Do I Find a Knowledgeable Doctor to Assess and Treat My Pain? 

 

As in so many other things in everyday life, the best way to find somebody who knows what he or she is doing is to be referred by another customer who has had a good experience. Professional information miners can sometimes find such people by doing targeted Google searches. But I advise patients or family members who are less trained in information recovery to start with the resources of a place like Living with TN or the US Trigeminal Neuralgia Association (TNA, a/k/a "Facial Pain Association" or "FPA", since they re-branded in 2001). You can always post a discussion here, with the title "Anyone know a good pain doctor near Location X?""

 

The following page provides an access gateway to search for physicians known to TNA, by medical specialty: see Find a Doctor or Care Center. Also useful are recommendations of TNA Support Group leaders and members of their groups: see Contact a Support Group. Finally, you may wish to join TNA just as you have joined Living with TN, so you may post to and read one of their two patient-centered interactive BLOGs: See Facial Pain Networks.

Yet another resource may be a central repository of information on pain management clinics and practitioners.  An organization known as pain.com has assembled a list of pain management clinics in the US, which may be accessed on this page: http://pain.com/clinics/.

 

Likewise, lest we forget: every page on this site has a search box at the top right. You might try searching on the name of the largest city near your home. If you don't locate a doctor directly, you might still find another member who lives nearby and has searched for doctors before you. If such steps fail to generate results, then go to the comment box at the foot of this page and ask the question. Within the necessary limitations of our very active personal and professional schedules, we'll see what I can do for you.

 

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How Do I Develop a Positive Doctor-Patient Relationship?

In the years I have been talking to neuropathic facial pain patients, I have lost count of the number of people who have related that their relationships with their doctors were at best distant and at worst approached dismissive or abusive on the doctor's part. Sometimes the issues are ones of doctor competence or lack of technical training in pain assessment and management. Other times, patients are left feeling that they have been judged and disregarded by doctors who do not listen to them or accord credibility to what they say.

 

In one case that I remember, a lady was told that if she came into the doctor's office just one more time with a fistful of papers she had looked up on the Internet, then she could forget about ever coming into the office again. The implication seemed strong to her that the doctor would also pass the word around to his local colleagues. I might add that this is one of the few situations where I have ever told a patient explicitly that I thought a doctor needed to have his posterior (figuratively) kicked into next week, to get his attention. I advised her to file a complaint with her State Board of Medical Examiners.

 

Many problems of this sort seem to stem from the ways patients choose their doctors and later interact with them. When you're in pain, it can be difficult to exercise critical judgment of professionals upon whom you feel dependent for help. For older people, particularly women, it may also seem emotionally difficult to "stand up to" or even imply to a doctor, that you are his or her employer -- not a parishioner in the Church of Medicine where he or she is an ordained priest. You have a right to be heard and regarded -- but if you do not assert that right from your very first contact with the doctor, then he or she may forget that you do. Thus it is wise to start out on the right foot, and to establish realistic mutual expectations.

 

There is an overriding motivation for pain patients to embrace an "activist" attitude with respect to doctors and medical treatment. People who become members of their own medical management teams actually do better and get better medical outcomes than those who are more passive or traditional in the doctor-patient relationship. Active, articulate patients get better care -- it's just that simple. If you feel physically or emotionally unable to sustain such an interactive relationship, then I'd strongly advise you to take a member of your family or a trusted friend with you to your medical appointments, to advocate for your interests and take accurate notes on what the doctor says and does.

 

Although your relationship with a doctor begins with recommendations you receive on his or her competence, it thereafter rapidly evolves after you first meet the doctor in his or her office. In such a first meeting, it is wise to regard the process as an interview, with the doctor as a job applicant. You're hiring professional help to sort out a nasty, terrifying, and complicated set of problems. You wouldn't hire a kindergarten teacher to instruct a University class in graduate physics, would you? So why would you hire an out-of-date or inappropriately trained general practitioner to deliver sophisticated diagnostic advice and a treatment plan? There are lots of things you need to know. Among those things are the following:

 

•  Who trained you and how long ago? Have you had (or have you taught) recent training in a hospital setting? Continuing education? May I read your Curriculum Vitae? In what local hospitals are you accredited?

• How many facial pain patients do you see in an average month? Of these, how many are Trigeminal Neuralgia patients?
• For someone with my reported medical issues, what steps will you take to confirm a diagnosis and evaluate me as an individual? How can I help you?
• Do you encourage patients to keep and share with you a pain journal? Will you use patterns of pain reported in journals as an input to my pain management plan?
•  If I am later having a pain crisis or severe breakthrough pain, will you be available for telephone consultation? Will I be able to talk to a triage nurse if you are engaged with other patients?

•  [for neurosurgery] Which surgery (or surgeries) do you do most often for this kind of pain -- and how often do you do such procedures (a few times per year is not enough)?
• [for neurosurgery] Based on what you know about me, am I a good candidate for the treatments you most often provide? Explain why or why not. Do you have literature I can read?
•  [for neurosurgery] Describe the procedure briefly. What equipment will you use? Who will assist you? How much will this surgery cost before and after insurance?
• [for neurosurgery] What is the likelihood this surgery will relieve my pain completely? Partially? For how long? How do you know? Can you refer me to on-line literature that confirms these statistics?
• [for neurosurgery] What are the possible side effects of surgery, and for someone like me how often do they occur?
• How will you follow the outcomes of my particular case over the next five years?
• I intend to be an active and participating member of my own medical treatment team. Are you comfortable with my participation? Are you willing to take time to explain to me your recommendations or to hear my concerns?

 

Not all physicians will answer these questions thoroughly or fully. Their time is limited, and some will not be inclined to accept cross-examination. The latter sort of doctor probably shouldn't be in practice, but that's a judgment you don't need to share with them. You need only to look for a better doctor if you feel you're not being heard or respected.

 

Obviously, nobody likes to be put "on the spot" or to have his or her competence questioned. Thus your questions should be asked in a respectful tone. And there are fair questions that work in the other direction as well: "What will you expect from me as your patient, and how can I help you make best use of your professional time on my behalf?" The point of the exercise is to establish a relationship with your doctor that is characterized by mutuality and mutual respect, and sustained by mutual work and clear communications.

 

For further information and thoughts on this subject, we recommend that you do an Internet search on the term "Interviewing Your Doctor."

 

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Are There Internet Resources for Free or Low-Cost Care?

This subject has been discussed in a thread begun by Shiela, a moderator and member here at Living with TN. It's a substantial thread, and with Shiela's permission I have incorporated many of its discovered resources into an even larger dedicated page on my personal website. Selecting the following link will open another page tab in your browser. When you've read as much as you care to, just close that tab and come on back...

 

Select "Free and Low-Cost Medical Care Resources on the Net."

A Featured Resource (December 2011):  Financial assistance with health care costs in the UK.  (Discovery Credit to Jackie Cornfield)

 

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What Can I Expect in a First Neurologist Appointment?

 

This section is edited and somewhat expanded from an article on my personal website, "Classification and Treatment of Chronic Face Pain."  Details are in addition to remarks above on establishing a good doctor-client relationship.

 

When you first visit a doctor for diagnosis of your facial pain, you should expect certain basic questions and procedures.  In general, the doctor should spend at least 30 minutes evaluating you.  You are dealing with an exceptionally painful and complex disorder. Evaluation "in a hurry" can miss vital clues. You should also expect to be listened to and accorded credibility by the doctor; you are his or her best source of information. Your pain experience matters.  If a doctor challenges or dismisses your reports, then dismiss the doctor as incompetent or at best insensitive.

 

•  A detailed medical history will be taken, including any blood-relative family experience of neurologic disorders. The doctor also needs to know what medications you now take, both for pain and for other conditions. Your time with your doctor may be more productive if you write out the details of your medical history before your appointment, and check them with a family member to verify their accuracy and wording.
• The doctor will request the details of your pain: how long you have had it, how it first emerged, the character and distribution of your pain symptoms, the circumstances when you have pain attacks, whether it disturbs your sleep, whether you experience "trigger" zones, how previous doctors have treated your symptoms.
•  The doctor may conduct what is called a "pin test," lightly touching a straight pin to your cheeks, throat, neck, and other areas of your face to determine if you have any present trigger zones for pain.
• Additional simple tests will be done to evaluate for generalized neurologic deficit. Your knees and elbows may be lightly tapped with a rubber hammer (reflex test). You will be asked to stand with your feet together and touch your nose with one finger of each hand.  Likewise, you may be asked to step two or three paces rapidly with your arms out from your sides. The doctor will gently test the strength of your grip and arm muscles on both sides. These tests can detect indications of TIA or stroke.
•  The doctor will darken the room and examine both of your eyes with a small optical instrument. By looking at the blood vessels and structures of your eyes, the doctor can sometimes detect evidence of stroke, benign tumor, or Arteriovenous Malformation -- any of which can be a source of facial pain.
•  If you have not already had a Computed X-ray Tomography (CT Scan), a Magnetic Resonance Angiogram (MRA), or a Magnetic Resonance Imaging (MRI), the doctor should order one or more of these procedures as a follow-up to your initial session. As indicated elsewhere in this article, MRI is generally done with maximum resolution (thin-slice, sub-millimeter resolution), both with and without a contrast agent such as Gadolinium. Lower-resolution procedures have less chance of detecting nerve compressions frequently associated with facial neuralgias. However, the absence of detectable nerve compressions is NOT a valid reason for eliminating surgery as an option. Many Microvascular Decompression (MVD) surgeries find such compressions even when they are not previously detected in MRI.
•  If the doctor chooses to prescribe anti-seizure medications, particularly those metabolized in the liver, then he or she should also order blood tests to characterize the function of your liver and kidneys. These tests should be repeated as the amount of your medication is tapered up to effective levels. Later tests will characterize the levels of active agents in your bloodstream. Opinion varies between practitioners concerning how often these tests are needed. However, based on my reading of patient reports, every three to six months seems a reasonable starting point.

 

After your lab tests are back, you should have a follow-up appointment with your neurologist. In this appointment, either diagnosis and treatment proposals should be discussed, or (in the event that the doctor is unsure of how to proceed), you should be referred to another pain specialist for a second opinion.

 

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What Role Is Played by an MRI in Diagnosis of Facial Pain ? 

 

One of the recurrent themes in various discussions on this site concerns the use of MRI (and sometimes other types of medical imaging) to aid doctors in coming to a diagnosis of long-lasting facial pain. The following is edited from a couple of my responses to posters in some of those threads.

 

TN is not "diagnosed" as such from MRI results alone. The key elements of TN diagnosis are medical history, the physical pattern and "kind" of pain, where in the face it manifests, and under what circumstances. A "positive" indication of nerve compression in an MRI can lend support to a diagnosis of facial neuralgia or a decision to do Microvascular Decompression surgery. But a "negative" indication should not be interpreted as a reason for eliminating MVD as an option. Likewise, millions of people who have nerves compressed by blood vessels have no symptoms at all.

 

To the best of my knowledge based on 16+ years of research as a layman, there probably is no generally accepted practice standard with regard to when and how an MRI should be performed on patients who present with facial pain attributable to neuropathic causes. However, from what I've read in multiple sources, I believe there is an MRI procedure that would be considered appropriate by most specialists who are strongly familiar with this category of pain and its treatment. This might be called informally "the gold standard of imaging practice."

 

This procedure is a full-skull series MRI, performed for 0.65-mm, thin-slice resolution. The MRI images are done both with and without a contrast agent. Post-procedure processing of the images is performed to generate a 3-D composite map. There are special magnet weightings considered appropriate for detailed examination of the trigeminal nerve. You might hear this procedure referenced as a "FIESTA" MRI or a "Trigeminal Protocol" MRI.

 

High-resolution MRI is useful in eliminating or confirming several potential sources of facial pain. These include the following:

 

• Arterial or Venous Compressions of the Trigeminal or Other Nerves

•  Benign or Malignant Tumor

•  Benign Cyst

•  Aneurysm

•  Arterioveinous Malformation

• Arachnoiditis

• Calcium Deposits

•  Small-Vessel Disease

•  Schwannoma

•  MS Plaques on the Trigeminal Nerve

(and probably more than a few that I've forgotten at this writing)

 

Some physicians use a CT Scan -- a series of high-resolution X-rays -- to examine for features in soft tissue. Resolution isn't quite as good, but the ability to see through bone and examine X-ray shadows can be helpful in some cases.

 

Caution must be applied in interpreting and acting upon even high-resolution imagery. It is frequently the case that MRI generates false negatives for relatively small features, such as arterial compressions or MS plaques. The features may be present but are still not seen in medical images. Likewise, diagnosing MS by means of MRI can require multiple procedures over a period of several months to look for changes and track them to patterns of pain response or physical limitation.

 

There are numerous case reports in the medical literature that relate doctor experience in having found a nerve compression by an artery or vein during an MVD procedure, although the compression did NOT show up in an MRI prior to surgery. Surgical teams led by Dr. Peter Jannetta (who popularized MVD for Type 1 TN) have reported that compressions were found during surgery in all but a very few among more than a thousand Type 1 TN patients treated by MVD. Other sources recently discussed here on Living with TN suggest a false negative rate of at least 10%, and I recall that sources I've seen in other literature reports indicated on the order of 20% or more.

 

Results in MS and Type 2 (Atypical) TN patients treated by MVD appear to be less definitive but are still suggestive of a basic principle in common with Type 1 TN. In my view and that of at least some neurosurgeons (Dr. Jannetta was at one time among this group, although I don't know his current opinion), an absence of MRI-visible compressions of the trigeminal nerve by blood vessels should NOT be taken as a definitive reason to deny a patient access to MVD surgery. Such an absence simply requires the surgeon to assess possibilities of success based on other factors in the patient's medical history and pain presentation.

 

MVD is frequently successful in reducing "Typical" TN pain in patients who have a mixture of Typical  and Atypical TN symptoms. It appears to be less frequently successful in reducing pain for patients whose symptoms are dominated by Atypical TN features or complicated by previous surgeries and nerve lesions (scars). However, "less" success is not zero success. My reading is that more research is needed to better discriminate the cases where success rates are higher from those where the surgery is more obviously unlikely to help.

 

It is also wise to be aware that not all MRI centers are equipped to work at sub-millimeter resolutions, or to do the post-procedure image processing. Some insurance companies also refuse to pay for high resolution, claiming (in my view, incorrectly) that the additional expense of the processing does not generate value in better diagnosis or treatment results. The last time I heard, a sub-millimeter MRI performed with and without contrast could cost over $3,000 at many medical centers in the US.

 

So (in my personal view as an informed layman) we may need to throw out the term "definitively" in just about everything we know or think we know about the disorder we are dealing with. The spectrum of symptoms and sensitivities in this patient population is simply too large to generalize reliably. MRI is probably the best technique that doctors have at their disposal. But some of the effects that generate pain in the 5th cranial nerve may be at the level of individual nerve fibers rather than in the nerve as a whole. MRI is not up to the task of diagnosis at that scale.

 

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Is Trigeminal Neuralgia Caused by Dental Work?

Short Answer: sometimes, although not always. (Don't you just hate it when you run into two-sided answers like this?)

 

There are considerable controversies in the practice of even general dentistry these days, not to mention endodontics. As pointed out in the comment box for this page by one of our members, there are numerous case reports in the dental literature of patients who present with long-lasting parasthesia (a combination of tingling, crawly sensations and numbness) after certain anesthetics are used in dental extraction or root canal. Errors during dental surgery may also result in crushing of the facial nerve (the 7th cranial nerve, which emerges from the brainstem a few millimeters from the trigeminal nerve), causing facial paralysis similar to "Hemifacial Spasm" or "Bell’s Palsy."

 

He also pointed out a controversy that I had not previously been aware of. There is considerable and sharp argument among dentists, endodontists, and patients with regard to the use of a particular packing agent called "Sargenti Paste," as a replacement for the interior biological pulp removed during root canal. This paste contains a chemical compound closely related to formaldehyde -- a known nerve toxin. There is evidence that during root canal, the paste may sometimes be extruded from within the tooth into surrounding tissues, including the branches of the mandibular nerve that run through cavities of the jaw. When the compound is processed by the human biological system, it can generate free formaldehyde and cause irreparable damage to the nerve. For readers who wish to read further on this issue, he provided a professional reference: Stephen Barrett, M.D., "Be Wary of Sargenti Root Canal Treatment."

 

Even with sealing agents other than Sargenti Paste, it is known that sealants in general can have neuro-toxic properties when they come in close contact with a nerve.  An article recommended by our member suggests a surgical procedure for dental surgeons which may be helpful in correcting the damage done by such sealants when they impinge on nerves in the jaw.  See"Damage to the Inferior Alveolar Nerve as the Result of Root Canal Therapy",  M. Anthony Pogrel, DDS, MD, FRCS, FACS  (J Am Dent Assoc, Vol 138, No 1, 65-69,. 2007)

A second controversy in treatment of facial pain has been the ruination of a few unconventional dentists. That controversy is raised by a proposed medical/dental disorder called "Neuralgia-Inducing Cavitational Osteonecrosis." The term is a mouthful, so just think of it as "NICO." Some dentists refer to the disorder disparagingly as "Ratner's Bone Cavities," naming one of the first dentists to propose the existence of this disorder.

 

NICO is described as a deep inflammation and/or infection of the nerve endings of the mandibular branch of the trigeminal nerve. It is hypothesized to occur when a dentist or endodontist accidentally introduces infection during a dental procedure such as extraction or root canal. Because the infection is contained within very small bone cavities that surround the nerve in the jaw, it is very difficult to knock out with conventional antibiotics. Those who advocate for NICO believe that the only reliable means of dealing with such an infection is to open the gum and bone and scrape it out (curettage), injecting antibiotics while the bone is open. This is a major "ouch," to say the least.

 

Very few mainstream dentists accept the validity of NICO as a medical disorder. Unfortunately for all of us, one must suspect that part of their resistance to the idea may be financial self-interest. They don't want to be sued by patients who develop chronic facial pain after a root canal. Also unfortunately, some of the means that have been used to suppress the claims of NICO advocates seem to border on witch-hunts. A number of NICO advocates have been disciplined by State Boards of Medical Examiners, and some have been outright driven out of practice.

 

I don't personally know whether or not NICO is a valid mechanism in chronic neuropathic facial pain. Even if it is, it is certainly not the only one. It is clear, however, that dental procedures do sometimes result in nerve damage that develops into chronic neuropathy of the face. For this reason if for no other, dental patients should exercise caution when their dentists recommend a root canal. Unless there is X-ray evidence of a dental abscess -- or some additional confirming evidence other than just the pain itself -- in my opinion you should NOT have this variety of surgery done.

 

At the present state of technology for panoramic X-rays, there is simply no excuse for ripping into your jaw unless the dentist can see visible evidence of infection on an X-ray. If he or she doesn't demonstrate that evidence to you, then it is always in order to ask whether the office equipment he or she is using represents accepted best practice for dental imaging -- and if not, to whom he or she can refer you for examination with more precise and revealing instruments.

 

Likewise, if you have a painful tooth extracted, and a few days or weeks later you begin to have pain in an adjacent tooth, then it is time to say "HOLD IT!" You first need to schedule an appointment with a neurologist or orofacial pain specialist. It is possible that your problem isn't dental at all, but rather an outgrowth of some form of neurology in the face, possibly deserving of the diagnosis "Atypical Odontalgia."

 

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What if I Need Dental Work?

For a Trigeminal Neuralgia or neuropathic facial pain patient, the discovery of a dental cavity -- or worse, an infected abscess -- can precipitate a very real medical and emotional crisis. Especially if you have trigger zones in the mouth or jaw, it can be very tempting to run for the hills rather than even attempting to have your teeth CLEANED, much less having a dental filling. Unfortunately, this understandable flinch reaction can cause you a lot of downstream trouble and even more pain than you have already. So what do you do if it seems you really must have dental work?

 

·         Consult with your neurologist or other primary-care provider who manages your facial pain. Depending upon how much your dentist knows about neuropathic facial pain, it may be prudent for these two medical professionals to schedule a telephone consultation before your next dental appointment.

 

·         When you consult with your doctor, ask about temporarily "loading up" on some of your medications (increasing your doses for a few days), to prevent breakthrough pain that might be caused by the dentist's disturbing the mandibular or maxillary nerves. During the past few years, I've talked with several patients who have found success in pain avoidance by this approach.

 

·         If you must have anesthesia for the procedure that the dentist proposes, then ask about the use of nitrous oxide (so-called "laughing gas") as a twilight anesthesia, and as an alternative to having Xylocaine or Novocaine injected into the gum.

 

·         If root canal is recommended, be sure that there is conclusive X-ray evidence of abscess or other observable evidence beyond the pain itself before authorizing that procedure. Then ask whether the endodontist uses a Sargenti-type paste in the procedure. If he or she does, then ask about alternatives. If the doctor refuses such alternatives, then fire him or her with extreme prejudice and find someone else who understands the risks of formaldehyde exposure for the facial nerves.

 

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Is Trigeminal Neuralgia Caused by Whiplash Injury?

Short answer: "yes," sometimes -- in fact fairly often (though not exclusively). During the past 16+ years, I have talked with more than fifty facial pain patients whose pain emerged after an automobile accident or other twisting injury to the neck or spine. I have also read a number of case reports by doctors and heard doctors relate their experiences during panel discussions at Trigeminal Neuralgia Association National Conferences.

 

That being said, the form of Trigeminal Neuralgia that seems to occur most often after whiplash is Type 2 (Atypical). This form of TN can be hard to diagnose precisely. And the distinctions between ATN and generalized facial neuropathy or Complex Regional Pain Syndrome are not always large enough to make a difference in treatment options.

 

Because of the nature of whiplash injury, it is common for automobile accident victims to see chiropractors for treatment. Particularly of interest to TN patients may be the subcategory of so-called "cervical" chiropractic. The Trigeminal Neuralgia Association has hosted presentations from cervical chiropractors in some of its Biennial National Conferences. Some patients report pain relief after a series of chiropractic treatments. However, my reading of the medical literature is that results overall have been somewhat hit-or-miss, with some patients receiving relief, some seeing no effect, and a few reporting sharp increases in their pain levels leading to termination of treatments.

 

I don't think the jury is in just yet on the "best" approach to treating TN caused by whiplash.

 

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Treatments for Typical and Atypical Trigeminal Neuralgia

Like our earlier description of the several varieties of facial pain, this subject can generate a ton of words. I'll try to give readers the highlights without drowning you, to help you get started in deeper reading and discussions with physicians who provide your medical care. In this section, the treatments I'll talk about are those specifically used against neuropathic facial pain called "Typical" and/or "Atypical" Trigeminal Neuralgia. We will talk elsewhere about treatments for Temporomandibular Joint Disorder. There are four broad categories:

· Medications

·        Surgical Procedures

·        Ancillary, "Alternative," and Experimental Treatments

·        Treatments to Avoid

 

         Medications

 

Drug treatment is generally the first line of defense in neuropathic facial pain. In some cases, a positive response to a short course of a selected drug may be used to confirm the diagnosis. For Type 1 (Typical) TN, the primary drugs of choice are Tegretol (Carbamazepine), Trileptal (Oxcarbazepine), Neurontin (Gabapentin), Lamotrigine, and Topiramate.

 

For Type 2 (Atypical) TN and for symptomatic facial neuropathy, the drugs of choice may expand to include one of several tricyclic antidepressants such as Elavil (Amitriptyline) or Nortriptyline.  Lyrica -- a drug commonly used for Fibromyalgia -- is also sometimes used in either type of TN.

 

When pain does not respond to the medications listed above, other meds may be tried or added. These include Phenytoin (Dilantin -- an anti-spasmodic agent), Baclofen, tranquilizers, corticosteroids, Nonsteroidal Anti-Inflammatory (NSAID) medications such as Naproxen Sodium, and opioid drugs such as Percodan, Percocet, or Vicodin.

 

It is important to realize that there is no one-size-fits-all medication therapy for neuropathic facial pain. Patient responses to drugs can be highly individual. A few patients are even hypersensitive to drugs, while others may experience toxic reactions in bone marrow or the renal system. Thus your doctor may need to try you on a series of meds, either alone or in combination, to find a combination that works for you at an acceptable level of side effects. And you may need to have periodic blood tests to monitor for toxic reactions, particularly for drugs that are metabolized in the live.  With Tegretol, for instance, a liver panel should be taken initially every few weeks, and over the long term about once every three to six months.

 

Many of the medications used to treat neuropathic facial pain are quite powerful. Likewise, in some cases, facial pain management is an "off-label" use of drugs originally intended for other purposes, such as seizure control or muscle-relaxing properties. Thus it is wise to be aware of precautions surrounding the prescription of these drugs as well as their possible short-term or long-term side effects. One of several places on-line where you may learn about such issues is “RxList.com.” This resource provides documentation for a large number of drugs, based on the US FDA circulars published with the drugs. Data from trials can indicate the most likely or widely experienced side effects as well as the proportions of people in trials who had to be taken off the drugs because of bad reactions.

There are many useful Internet resources for identifying drug treatments, understanding the side effects of drugs you have been prescribed, and identifying potentially dangerous interactions between drugs when you take more than one.  Among the most helpful is  Drugs.Com-- authoritative information on common drugs.  See especially the links from their home page on "Find Drugs by Disease or Condition" and "Interactions Checker". 

A few additional references here may be of interest to people who have neuropathic facial pain. The following abstracts provide an overview of medical best practice for the drug treatment of all neuropathic pain, including TN and ATN. Selection of a link will open another browser page to the PubMed archives. You can then print out the abstract, go to a University Medical School library, and request the full text of the article from their medical journal stacks or via interlibrary loan.

 

·      A. B. O’Connor and R. H. Dworkin, “Treatment of Neuropathic Pain: An Overview of Recent Guidelines,” American Journal of Medicine 122 (10 Supp.):S22-S32 (October, 2009).”

 

·       R. H. Dworkin,  A. B. O’Connor,  J. Audette,  R. Baron,  G. K. Gourlay,  M. L. Haanpaa,  J. L. Kent,  E. J. Krane,  A. A. Lebel,  R. M. Levy,  S. C. Mackey,  J. Mayer,  C. Miaskowski,  S. N. Raja,  A. S. Rice,  K. E. Schmader,  B. Stacey,  S. Stanos,  R. D. Treede,  D. C. Turk,  G. A. Walco, and  C. D. Wells “Recommendations for the Pharmacological Management of Neuropathic Pain: an Overview and Literature Update.”  Mayo Clinic Proceedings 85 (3 Supp.):S3-S14 (March, 2010).

A. Vadalouca,  I. Siafaka,  E. Argyra,  E. Vrachnou, and  E. Moka, “Therapeutic Management of Chronic Neuropathic Pain: an Examination of Pharmacologic Treatment.”   Annals of the New York Academy of Sciences 1088:164-186 (November, 2006).

·         I. Gilron,  J. M. Bailey,  D. Tu,  R. R. Holden,  D. F. Weaver, and  R. L. Houlden,  “Morphine, Gabapentin, or Their Combination for Neuropathic Pain.”  New England Journal of Medicine 352(13):1324-1334 (March 31, 2005).

 

There are many more references in the PubMed database. I strongly recommend that you become familiar with this resource as an aid to talking with your physician team. See the National Library of Medicine, National Institutes of Health.

 

        Surgical Procedures

 

When medications are unsuccessful in managing facial pain or when the side effects of medications become toxic or disabling for the patient, surgery may be considered. Many physicians are disposed to recommend against surgery for ATN (Type 2 TN), because rates of surgical success are lower than for Type 1 TN. Likewise, some physicians may actively resist surgery if they do not find evidence of nerve compression by blood vessels in MRI imagery. However, vascular compressions are often found during the exploratory phase of Micro-vascular Decompression where none was previously detected in medical imaging.

 

Several surgical procedures are available to patients considering this option. Selection of a particular procedure needs to be based upon the general state of patient health (particularly clotting problems, high blood pressure, or previous stroke or cardiac problems) as well as on the likelihood of success, length of probable pain relief, and risk of bad side effects in patients who present with your specific patterns of pain. As noted elsewhere in this article, general observations about surgical procedures are helpful as information but not definitive as advice or guidance for you as an individual.

 

Also important is the experience of the prospective surgical team. You are more likely to get a positive outcome from a team that does your chosen procedure five times each week than from a surgeon who does five procedures per year. Likewise -- in my personal view -- the absolute LOUSIEST reason for choosing a type of procedure is because your doctor does it and recommends it. The doctor should be required to demonstrate both his or her experience and the long-term outcomes in a large group of previous patients tracked over time. If a doctor isn't doing follow-up surveys on pain recurrence, then I would have very strong reservations concerning his or her suitability to work for someone in my own family.

 

There is nothing wrong with having a young doctor do your surgery, especially if the procedure is one of the less complicated. But if a doctor has done your procedure only a few times, you should ask what more experienced surgeon (by name) will be in the operating theater with him or her, looking over his or her shoulder. Then go read (or have an expert read) both doctors' Curriculum Vitae. The last thing you need is to be on the bottom end of somebody's learning curve, without adequate senior oversight. Likewise, this type of surgery is no job for a general practitioner or even for a neurosurgeon who lacks highly focused and specific training for intracranial procedures.

 

Six surgical procedures are commonly used against facial neuropathy and neuralgia. I have listed them below. The ones that I assess from readings in the medical literature and from patient reports to be the most effective and long-lasting are listed first. Based on their own clinical experience, some physicians might contest my judgment on this priority order. If asked to advise a close family member or friend on how to figure out who is "right" in such a discussion, I would suggest that he or she ask how the doctor knows what he or she claims to know about success rates.

 

"Please don't offer your clinical judgment alone. I want to see your numbers and/or your published papers based on procedures you have actually performed yourself or supported as a member of surgical teams." This is admittedly a tough standard to meet. But you're dealing with an extremely tough condition, and things that a doctor may do while you are under anesthesia can sometimes make matters worse if he or she screws up. Remember that the doctor is being paid a great deal to work as your employee. He or she is not a high priest in some esoteric religion, immune from questioning and requiring your blind faith.

 

Microvascular Decompression is often regarded as the "gold standard" against which all other procedures are compared. It is the only surgery that attempts to remove a basic cause of pain rather than blocking or suppressing pain by creating lesions on the trigeminal nerve farther along the nerve distribution. MVD involves opening a nickel- to quarter-sized hole in the skull behind your ear, visually examining the area around the brainstem with a microscope or endoscope, finding places where a vein or artery touches the trigeminal nerve, and then inserting surgical padding between the vessel and the nerve. After separating the nerve, the doctor closes the incision, sometimes with a titanium plate screwed into the skull bone.

 

For an experienced surgical team treating patients with Typical TN, the initial rates of successful pain relief can be in the 90-95% range for Type I (Typical) TN pain.  Stats for Type II (Atypical) pain are not as good (see below). Many patients wake up from surgery pain-free, although pain from the procedure itself may linger for a few days to a few weeks. About 70% of all Type I MVD patients are still pain-free after ten years. More than half continue to be pain-free past 15 years. Among Type II patients, pain is fully or significantly (partly) relieved in about 50% of MVD patients for at least five years.

[See  "Predictors of outcome in surgically managed patients with typical and atypical trigeminal neuralgia: comparison of results following microvascular decompression.",   Tyler-Kabara EC, Kassam AB, Horowitz MH, Urgo L, Hadjipanayis C, Levy EI, Chang YF.  Department of Neurosurgery, Center for Cranial Nerve Disorders, University of Pittsburgh Medical Center, Pennsylvania 15213-2582, USA.]

Mortality for MVD is very low -- less than 1% (and never in my research a direct outcome of the surgery itself). Serious and lasting side effects can occur in about 10-15% of MVD patients. The most severe of these effects is Anesthesia Dolorosa (AD), a form of facial pain that combines deep burning and aching with a loss of surface sensation. AD is very difficult to treat with anything other than opioid drugs. It can occur in other procedures as well. I am uncertain whether any of the procedures has a markedly lower incidence of this lasting side effect

 

One note, derived in part from an inquiry received here at Living with TN: as reported in a few medical literature references, it appears that the chances of a pain recurrence after MVD are higher when the offending vessel is a vein than when it is an artery. Possibly reflecting this reality, some surgeons choose to divide and cauterize veins that are touching the nerve but not growing into it. There is a balance to be struck between addressing a known source of pain versus possibly damaging the nerve by excess handling during surgery.

 

Also of concern is that some neurosurgeons advise against MVD for Atypical TN patients, even when a nerve compression is detected in MRI imagery.  However, in addition to the reference above at least one more recent paper on the subject indicates that for patients whose pain starts out as Typical TN with its stabs of electric-shock pain, MVD can be almost as effective when 50% of present pain is constant.

See: “Effect of Microvascular Decompression in Trigeminal Neuralgia Patients with or without Constant Pain.”

 

Another useful article in the Knowledge Base of the TN Association is: "Microvascular Decompression in Patients with Isolated Maxillary Division Trigeminal Neuralgia, with Particular Attention to Venous Pathology"  The authors found that surgical outcomes of MVD for Atypical TN Patients with this type of isolated pain were about the same as for Typical TN patients. 

 

Some doctors offer an alternative to MVD in what is called "partial nerve section," for patients in whom no compressions are identified during surgical exploration. The intent of partial nerve section is to cause a lesion on the nerve, downstream from its emergence from the brainstem, reducing the efficiency of nerve firing that causes cascades of pain. Nerve section has a higher risk of disabling side effects and pain recurrence in what is called “Differentiation Pain" -- originating in the central nervous system due to interruption of nerve paths to the peripheral nerves and sensing. For this reason, the procedure is considered by some neurosurgeons to be a desperation measure.

 

Another reference was provided by our Living with TN user "Emmy."  Dr. Hugh B. Coakham of the Neurosurgical Clinic at BUPA Hospital, Redland Hill, Bristol, UK, is highly authoritative in this field. Elements of the outcomes analysis in his article were performed independently by Dr. Joanna Zakrzewska, a serving member of the Trigeminal Neuralgia Association Medical Advisory Board.  See: Hugh B. Coakham. M.D., "The Surgical Treatment of Trigeminal Neuralgia." Advances in Clinical Neuroscience and Rehabilitation 7(2) (May-June, 2007).

 

In a sampling of 359 patients who underwent MVD, 96% of those for whom the procedure was a first surgery declared their satisfaction with the surgical outcome. For patients where MVD was a second procedure following previous Glycerol or Radio Frequency (RF) Rhizotomy, or nerve block, 76% were satisfied.

 

The great majority of all patients declared that they would have preferred to have the surgery earlier than they had been permitted to, probably related to the fact that all had failed medical therapy before being offered surgery. Unusually, Dr. Coakham’s study is one of the few papers to report results of annual follow-up patient surveys for a period up to 12 years.

   One note of caution:  some patients are allergic to metals commonly used in plates which cover the incision made during an MVD -- particularly titanium or the nickle used in hardening titanium. If you know that you have allergies to metals, then tell your doctor in advance of MVD, or your dentist in advance of any facial surgery to correct for bite or TMJ issues. [Discovery Credit:  Carol Harmer and Tinkerbell, members of Living With TN]

 

Radio Frequency Rhizotomy (also known as RF Lesioning) has initial success statistics comparable to those of MVD. It is a less expensive office procedure that involves inserting a surgical probe through the cheek and threading it into one of the spaces in the skull through which the trigeminal nerve passes. The end of the probe is then heated while in contact with the nerve, to cause a controlled lesion  on the nerve. This lesion is intended to interrupt or moderate surges of nerve activity that cause the volleys of electric-shock pain experienced by Typical TN patients.

 

The paper by Dr. Coakham indicates that long-term outcomes of RF Rhizotomy are highly comparable with MVD, although a somewhat lower percentage of surveyed patients declared satisfaction with their current situation, Success rates for a second or subsequent procedure are lower than for the initial surgery. For a second MVD, 76% were satisfied versus 96% on a first MVD. 64% of second-time patients versus 60-80% of first-time patients in other types of surgery declared that they would have the procedure that they received, again.

 

Balloon Compression is a variation on RF Rhizotomy in which the desired lesion on the trigeminal nerve is created by inflating a small surgical balloon that has been threaded through a probe inserted into the patient's cheek. Inflation occurs while the probe is in contact with the surface of the nerve, and the lesion is a result of crushing the myelin layer of the nerve in a limited region. The procedure has not been as widely used as RF Rhizotomy. In sources I have read, the success statistics and persistence of relief appear to be somewhat lower than those with RF Rhizotomy or MVD.

 

Gamma Knife Stereotactic Radiosurgery (GK) is advertised and advocated as a "noninvasive" surgery that requires no opening of the skull or use of physical probes. The patient's head is immobilized in a rigid frame, while a pattern of collimated beams of gamma radiation is delivered to a target area on the trigeminal nerve. By dividing up the total dose in multiple beams from different directions, the radiation exposure of tissues surrounding the target zone is reduced, while irradiating a small zone of the surface of the nerve with sufficient energy to cause a lesion.

 

In January, 2009, the International Radiosurgery Association (IRSA) updated its practice guidelines for the use of Stereotactic Radiosurgery in Trigeminal Neuralgia. From that source, the reported results with Gamma Knife vary widely between reports, with full pain relief observed in 50-75% of patients and relief kicking in over periods of weeks to months following the procedure. Bothersome facial numbness was observed in about 15% of the cases. Recurrence of pain within a few months up to five years appears to be a significant concern. About half of patients in some trials had recurrence within three years after surgery.

 

Not acknowledged in the IRSA practice standard are side effects of Gamma Knife outside the target zone of the procedure. At least two neurosurgeons who perform MVD surgery have reported to me that when they have performed MVD as a second procedure for recurring pain following Gamma Knife, they frequently found "a real mess," with multiple lesions and adhesions of the nerve to surrounding tissues. Such conditions can significantly reduce the likelihood of a successful outcome during a re-operation by MVD or other procedures.

 

In my opinion, the most supportable role for Gamma Knife Radiosurgery is with patients for whom MVD is not an option having acceptable risk. This would largely be older patients whose cardiac health may be compromised by general anesthesia and those who suffer from high blood pressure or stroke. I do not accept that the term "noninvasive" is an accurate description for the total impact of this procedure on the patient.

 

I also note that some of the physicians who contributed to the IRSA practice standard were affiliated with hospitals that have invested in expensive radiosurgery treatment centers. Thus there is an implied financial self-interest in lending the best possible interpretation of reported outcome statistics. This self-interest is not acknowledged in the published standard.

 

Glycerol Rhizotomy is also a peripheral surgery involving a probe through the cheek. It is performed as a medical office procedure. The lesion is created by exposing the trigeminal nerve to a solution containing a form of alcohol. Rates of initial success with this procedure are not as good as observed with RF Rhizotomy or MVD, and recurrence rates are much higher. About half of all Glycerol patients have recurring pain within two years. However, doctors who use this procedure point out that Glycerol Rhizotomy can be repeated multiple times, whereas there is a lifetime limit on the amount of gamma radiation exposure considered safe.

 

Cyber Knife (CK) is another variant on Stereotactic Radiosurgery. It is newer than Gamma Knife and employs an accelerated beam of photons rather than beams of gamma radiation. The procedure was originally developed as a real-time treatment for tumors throughout the body. Direction of the photon beam is controlled with the aid of X-ray imaging. In the IRSA practice standard, it is acknowledged that the accuracy of targeting with Cyber Knife is somewhat less precise than with Gamma Knife. From two to six times as much radiation energy is deposited in tissues immediately surrounding a nominal target zone of 1-mm diameter.

 

Not as much information is available on success statistics with Cyber Knife as for Gamma Knife. As with GK, there are certainly patients who report being pain-free within a few weeks after surgery. In the patient reports I have read in various on-line forums, I have also seen a lot of reports that the procedure apparently made no difference at all. But we cannot generalize such an impression as scientific evidence. Thus I would have to say that the jury is still out concerning how effective either GK or CK is for Trigeminal Neuralgia patients.

 

For readers interested in deciding between surgeries, there is an excellent if somewhat dated article written by Drs. Taha and Tew of the Mayfield Clinic in Cincinnati, Ohio. Dr. Tew is a past member of the TN Association Medical Advisory Board. You should be able to find this article via interlibrary loan at any large University Medical School library.  See: Taha, J. M., Tew, J. M., Jr.: “Comparison of Surgical Treatments for Trigeminal Neuralgia: Reevaluation of Radiofrequency Rhizotomy.” ,” Neurosurgery 38(5):865-871 (May, 1996).

 

      Ancillary, “Alternative,” and Experimental Treatments

 

One reads a lot about so-called "alternative or complementary medicine" these days. The term generally applies to treatments that most medical doctors do not accept as having been proven effective.  A lot of the "evidence" for such treatments consists of patient testimonials or anecdotes. This is the weakest form of medical evidence.

 

Although I may be accused of having my tongue stuck in my cheek, I would remind readers of an old dictum from military systems acquisition that has its fans in medicine as well: whenever somebody uses the term ”holistic,” you'd best check to see that you still have your wallet. The term seems overused by some practitioners who may be more interested in your money than your long-term health.

 

For all of the following treatment modalities, one can find at least a few facial pain patients who have experienced pain relief or reduction, sometimes for periods ranging up to several months. Hundreds or thousands of websites come up in any Google search on these terms. But for chronic neuropathic facial pain, my reading of medical literature is that few of the treatments have generated results consistently better than can be accounted for by a placebo effect. In many cases, there seems to be no published medical evidence for effectiveness at all. With regard to chemically active "supplements," appropriate care must also be exercised to avoid toxic reactions and drug interactions that can reduce the effectiveness of prescribed medications.

 

I advise anyone who is considering one of the following modes of treatment to be monitored by a mainstream physician as you experiment. Likewise, it will be wise to read up on what is known authoritatively at the National Center for Complementary and Alternative Medicine.

 

Compounding and Topical Application of Drugs. Many people report severe side effects from use of anti-convulsive or anti-depressant drugs. To reduce potential systemic side effects and deliver active ingredients of the drug primarily to the region where effects are desired, some physicians work with compounding pharmacists to provide an alternative to pills. The active ingredients in prescribed medications can be ground up and combined with creams or lotions, for application to the surface of the face or neck, generally nearby any trigger zones associated with the pain.

 

In past TNA National Conferences, some patients have reported significantly better relief of symptoms with fewer side effects, and presentations have been given by pharmacists. Contact the TN Association office staff or patient representative (Cindy Ezel) to request short-term use of conference videotapes in the TNA library.

 

Capsaicin or "Hot Pepper Cream" applied to the face has proven to be one of the few means of short-term relief for Anesthesia Dolorosa caused by trigeminal surgeries. It appears that the active agent in red peppers that causes their burn on the tongue can sometimes and for some people numb the nerve endings in areas of the face where patients experience severe burning pain. Higher concentrations of this agent are available only by prescription.

 

“Cervical” Chiropractic and Craniosacral Therapy are known to have helped some patients with neck and facial pain. Cases have been reported in panel sessions of Trigeminal Neuralgia Association national conferences in the US. Whiplash patients particularly seem to be helped by this variant of chiropractic. A good rule of thumb, however, is that if you don't hurt, then don't go back for "maintenance" treatments. There is no medical evidence (that I know of) that such treatments in the absence of pain have any positive or preventive effect.

 

Likewise, I suggest that you do NOT permit a chiropractor to employ techniques of violent or wrenching adjustment of the upper spine. Such techniques have generally passed out of favor with most practitioners. This may be due in part to the fact that a few patient case reports have documented extreme pain reactions, fractured vertebrae, or ruptured discs from such techniques.

 

Be aware that chiropractic medicine is not accepted as effective for the treatment of internal organ disorders. There is also no consistent evidence for the proposition that "subluxations" (spinal misalignments or vertebral displacements) cause health problems other than pain in the legs and lower back. There are numerous Internet reports that chiropractors who apply thermal measurement instruments to identify such subluxations are practicing outright fraud even if they are convinced of their own propaganda.

 

Acupuncture and Acupressure both rely upon the concept of "meridians" or pathways of body energy, from traditional Chinese medicine. Using either small needles inserted under the skin, or massage targeted on supposed natural pressure points or energy centers in the body, these techniques seek to restore a natural "balance" of energy flows in the body system. Both acupuncture and acupuncture have been demonstrated in some controlled studies, to help with low-level pain conditions. Some patients swear by them for conditions such as Osteoarthritis Pain  and Fibromyalgia. Acupuncture has even been used as an effective anesthesia in childbirth. But as yet, results have not been consistent for facial pain patients.

 

Herbal Therapy and Aromatherapy are marketed and advocated by literally tens of thousands of so-called "dietary supplement" and on-line "pharmacy" websites. I group them together because the active ingredients in Aromatherapy are generally herbs that may also be available by pill or dietary supplement.

 

If you decide to try one of the herbal supplements, then consult with a general practitioner or internist and have him or her monitor your results. Likewise, take time at the PubMed abstract archive to look up papers on the active ingredients of such remedies. A few herbal preparations (notably Ginkgo Biloba) have been found effective as anti-oxidants and energy support preparations. Preparations of complimentary medicine such as Cymbalta, seem to be helpful in low-level depression. But the manufacturers of many herbal preparations seem to play their cards very close to the chest with regard to "secret formulas" for which they claim miracles. An attitude of polite skepticism seems warranted when such claims are made. Do your homework -- or come back and talk with us in the comment box at the foot of this page, about doing it with you.

 

Transcutaneous Electrical Nerve Stimulation (TENS) units are an extension of experiments using electrical currents to promote healing of broken bones or torn muscles, tendons, and ligaments. Some of this experimentation goes back 20+ years and the Russians published a lot of the early work. I have talked to at least three chronic facial pain patients who have had positive outcomes from the use of such devices. One of them reported having driven her pain into remission for more than a year.

 

There is evidence for the effectiveness of TENS units in discrete bone fractures, tendon healing, and possibly some arthritic conditions. But the evidence is less clear for chronic facial pain or general neuropathy at other points in the body. As far as I know, there is no generally accepted standard of medical practice for programming the electrical currents generated by such devices, although there are a few protocols offered by individual doctors to their patients.

 

Thus I would encourage anyone who wants to try a TENS unit to do so at first in a doctor's office with supervision, and to follow the doctor's recommendations concerning the strength and frequency of electrical pulses being used. The golden rule here is "if it starts to hurt, then stop and talk to the doc!"

 

Deep Brain Stimulation and Motor Cortex Stimulation involve surgical implantation of electrodes in or on the surface of the brain, to introduce electrical pulses into brain structures that are involved in perception of pain, voluntary motion, or seizure. My impression is that this class of experimental techniques appears to have emerged first as a treatment for Parkinson's Disease. At least two of the present or past members of the TN Association's Medical Advisory Board have experimented with Deep Brain Stimulation applied against chronic facial pain. One of those investigators is Dr. Kenneth F. Casey, co-author of "Striking Back -- the Trigeminal Neuralgia Handbook." I am presently researching his published work on the subject. I'll incorporate anything promising that I find, as soon as I can.

 

Botox, Cortisone Injections, and Nerve Block. I've heard from several patients over the years whose doctors have tried facial injections of agents such as Lidocaine, Phenol, or Cortisone, intended to cause long-term numbing of areas of the trigeminal nerve distribution. In the case of Botox, shots are generally not delivered directly into the Stellate nerve ganglion. With nerve block, the ganglion is deliberately targeted to numb the downstream distribution of the nerve.

 

Some doctors consider any pain relief generated by these techniques that lasts beyond 48 hours to be a confirmation of facial neuropathy as the source of pain. When Stellate nerve blocks work, they are generally effective for a few weeks at most. Thus some patients report having undergone a series of blocks over periods of months or years. However, I do not believe that the long-term risks and effectiveness of repeatedly using this technique have been fully explored or reported in medical literature. Likewise, be aware that Botox is a nerve toxin based on the Botulinum bacterium.

 

Healing Touch and Low-Impact Exercise. Healing touch can be thought of as a type of skilled massage, sometimes administered with mental visualization exercises to promote relaxation, release tension, and reduce anxiety. Although (to my knowledge) there seem to be few studies of effectiveness under controlled conditions, it is known that both healing touch and moderate low-impact exercise may increase blood levels of neurochemical endorphins. These chemicals act to reduce pain sensitivity and improve emotional affect.

 

Increased levels of endorphins are also sometimes observed in people who meditate, pray, or practice Tai Chi Chuan and the various Yoga disciplines. These disciplines are very good for promoting body flexibility, muscle tone, and resilience. The inner mental exercises associated with Yoga and meditation can help to alleviate or manage both situational stress and social anxiety disorder. By regularly engaging in these exercises, practitioners are forced to create a short period (generally 20-30 minutes) every day in which their time is their own. The mental quietude generated in such periods is a healing influence on many of the ailments that plague us so-called "civilized" hurry-and-rush addicts.

 

Chronic facial neuropathy patients have tried and reported on other therapies of alternative and complementary medicine as well. However, to explore these techniques, I will leave it to the reader to visit Amazon and purchase "Striking Back -- the Trigeminal Neuralgia Handbook" by George Weigel and Kenneth F. Casey, M.D. There are also personal experiences in the Knowledge Base at the Facial Pain Association.

 

     Treatments to Avoid

 

       -- Low Level Laser Light Illumination

 

If a treatment is not recognized by a standard medical procedure code and reimbursable by Medicare, then you should exercise prudent and skeptical care not to get caught up in one of the many scams that are worked upon desperate people in pain. If a procedure or treatment is experimental, then the safest environment in which to be a part of the experiment is in a medical trial sanctioned by a major University medical center, by the US National Institutes of Health, or by similar organizations in other countries. If you choose to work with a physician or medical center that is not affiliated in this way, then either do yourself, or have an expert do for you, a due-diligence check of Internet information on the procedure and its advocates. Feel free to request such a check via the comments box at the base of this page.

 

As this article reaches publication, there is one medical treatment that the authors recommend avoiding, based on concerns voiced above. This treatment involves the use of low-power laser illumination of the face or neck, in an effort to promote healing of lesions on the trigeminal nerve, and thus drive Trigeminal Neuralgia into remission. At least two "Laser Medical Centers" have come to our attention, which are representing themselves to patients as able to "cure" or greatly alleviate Trigeminal Neuralgia pain.

 

Laser illumination for deep tissue healing has been discussed in articles in medical literature. But (at least to my knowledge) no controlled trials have been conducted for Trigeminal Neuralgia or neuropathic facial pain. The entirety of evidence offered by centers using this technique appears to be anecdotal. The US FDA has granted only the weakest type of accreditation to laser illumination procedures, indicating that they are safe -- not necessarily effective, merely safe. They won't hurt you. But medical insurance won't cover the cost, which can be several thousand dollars for multiple treatments over a period of two weeks or more.

 

A low-power blue-green laboratory laser can be purchased on the open market for less than a thousand dollars. Likewise, laser illumination can be delivered by a medical technician. Thus the high cost of the procedure is almost certainly not a matter of recovering the overhead expenses of the Treatment Center. Do you really want to spend thousands of dollars to have your neck warmed by a common light bulb? As far as I can determine from diligent research, such a procedure may prove to be just as effective as laser illumination.

 

Thus my advice is ... "BUYER BEWARE."

 

        -- Ayurvedic Medicine

This branch of so-called "complimentary and alternative  medicine" is based upon traditional practices of medicine in India, dating from 1500 years BC.  Several modern institutions of medicine and education support training for Ayurvedic practitioners in India.  However, many traditional remedies and medicines in this framework have not been rigorously tested and are not manufactured to any accepted standard of contents, purity, or control of contaminants -- either in India or elsewhere.

 

As noted in Wikipedia, "Safety concerns have [also] been raised about Ayurveda, with two U.S. studies finding about 20% of Ayurvedic treatments tested contained toxic levels of heavy metals such as lead, mercury and arsenic. Other concerns include the use of herbs that contain toxic compounds and the lack of quality control in Ayurvedic facilities."

Thus again my advice must be ... "BUYER BEWARE."

 

===========================

 

Side Effects of Medication or Surgery

 

As noted elsewhere in this article, both medication and surgery can have significant and undesirable side effects. Sometimes doctors do not do a super job of preparing patients to recognize or manage such effects, especially in the initial stages of getting acclimated to a new medication, or in the days immediately following a surgical procedure. Thus, the information below is intended to help you ask appropriate questions of your medical care team, particularly if you're having trouble. It should NOT substitute for the considered opinion and guidance of a physician.

 

     Medication Side Effects

 

Many of the medications commonly used in treating neuropathic facial pain were originally developed for other purposes, notably seizure control or depression management. These are powerful drugs that may need to be gradually tapered up or down when you are starting them or coming off them. Some will take days or weeks to come to an effective level in the bloodstream. Be especially aware that if you attempt to stop anti-seizure drugs all at once -- "cold turkey" -- you might actually cause a seizure. You should not change your prescription doses either up or down without consulting a physician.

 

Some of the primary side effects of the medications used in facial pain are summarized below. None of these meds produces all of the effects (fortunately). Likewise, some patients don't experience the side effects, even though others do -- and nobody is really sure why the effects are so individual. The good news here is that in many cases, as your body gets used to a med, the severity or intensity of the initial effects will be reduced.

 

Along with pain relief or reduction, any of the following may occur in response to medication:

 

·         Sleepiness (somnolence) or wakefulness

 

·         Lack of energy

 

·         Mental "fuzziness," sometimes called "brain fog".

 

·         Loss or disturbance to short-term memory

 

·         Word-finding difficulty in speech

 

·         Spelling and grammar problems in writing

 

·         Weight gain or loss

 

·         Disequilibrium or vertigo, loss of balance

 

·         Disturbances of gait in walking

 

·         Constipation

 

·       Gastric distress or colitis (particularly with drugs like Ibuprofen or Naproxen Sodium)

 

·         Altered blood pressure or heart rate

 

-     Vitamin D deficiency [primarily from Sodium Channel Blockers like Tegretol]

 

-     Stevens-Johnson Syndrome (Toxic Epidermal Necrolysis) -- a very rare and potentially fatal toxic reaction to drugs, particularly anti-seizure drugs like Carbamazepine (Tegretol).  [See Derm Net New Zealand]

 

Some patients may be either hypersensitive or allergic to certain drugs. With any drug that is broken down in the liver (notably Tegretol), there may be RARE cases of toxic side effects in the hepatic (liver and kidney) system. Some patients may experience toxic reactions with suppression of bone marrow function and red blood cell count. For these reasons, you should have blood tests (a liver panel) done before starting such drugs and periodically thereafter to check on their cumulative effects.

 

Some patients treated with Tegretol and other Sodium Channel Blockers may experience very low blood sodium levels, to a point of fainting.  Such a reaction is considered toxic and should prompt your doctor to change your medications. 

 

Some of the anti-depressant drugs have side effects similar to those of the anti-seizure drugs. In addition to those effects, however, there is a risk of either anxiety attacks or deepening depression and thoughts of suicide or self-harm. The degree of risk varies between meds and between patients. Thus you should be advised by your physician on what to expect in your own thoughts and energy patterns. You may also be wise to ensure that someone in your immediate household is aware that you are taking an anti-depressant and what the risk factors are.

 

As noted earlier, you can read about the side effects of almost any medication in common use through sites such as “RxList.com.”

 

     Surgical Side Effects

 

The primary surgical side effect that nobody wants is an immediate failure to provide relief or, worse, an occurrence of even more pain than you had before. Fortunately with most procedures, the "more pain" outcome has become less common during the past 20 to 30 years, and the severity of other bad outcomes has been reduced.

 

Still, an estimated 10-15% of patients who undergo MVD, RF Rhizotomy, other forms of Rhizotomy, Gamma Knife or Cyberknife, may experience one or more of the following outcomes starting within days to weeks following surgery. None of the procedures causes all of the effects in the list. Thus you need to consult in advance with the neurosurgeon who is to perform any procedure on you to understand which might be pertinent and how often the surgeon has seen them in patients he or she has treated.

·         Surgical Wound Infection with Lasting Pain

 

-       Meningitis -- (MVD only) an infection of the membranes which surround the brain and spinal chord (rare, but potentially life threatening when it occurs)

 

·         Anesthesia Dolorosa -- burning pain underlying facial tactile numbness

 

·         Parasthesia -- an itchy, crawly sensation combined with surface numbness

 

·         Facial Numbness -- loss of sensation without other sensory effects

 

·         Partial Facial Paralysis

 

·         Loss of Hearing (rare, and only with MVD)

 

·         Loss of the Tearing Reflex of the Eye, with a Risk of Ulceration to the Cornea (also MVD)

 

·         Surgical Adhesions and Arachnoiditis (possibly more common with Gamma Knife than other procedures)

·         Central Nervous System Fluid Leak (rare, and only with MVD)

 

·         Differentiation Pain (caused by surgical interruption of connections between peripheral nerve endings and the central nervous system).

 

Given the range of possible bad effects of surgery, one might reasonably ask why anyone would risk such outcomes. An honest answer is that these are RISKS, not certainties. When the pain itself is both certain and unacceptable in any normal life, those risks may be found acceptable.

 

Likewise, the severity and significance of potential side effects vary between surgical procedures and between patients. With respect to facial numbness or even paralysis, some patients voice the sentiment that their numbness was highly preferable to the pain they experienced before. These judgments of risk and benefit are individual to each patient. Your doctor should assist you to understand the balance you are trying to strike between the two.

 

===========================

 

Special Concerns and Problems of Atypical TN Patients

 

Stef (a co-author of this page) moderates and leads a sizable and active group here at Living with TN for patients who have Atypical (Type 2) Trigeminal Neuralgia. Those patients deal with a number of challenges that even people with the more Typical  (Type 1) TN do not.

 

ATN is a tougher beast to diagnose clearly than Type 1 TN. MRI isn't as reliable for confirming nerve compression, and symptoms tend to overlap more with other types of neuropathic facial pain. Because of the overlap in symptoms, a number of neurologists I've talked with over the years have suggested that probably a great many patients have been told that they have Temporomandibular Joint Disorder, when what they actually have is ATN or some other form of neuropathic facial pain.

 

 Because ATN is often 24-7 pain, it can be even more tiring and sleep-depriving -- and therefore an even greater chronic depression and anxiety risk. Of all facial pain patients, perhaps ATN sufferers can benefit the most from supportive therapy, Cognitive Behavior Therapy, and pain management training administered by a psychiatrist or psychologist. Such a professional should understand and reflect in his or her case records that the underlying physical pain is real rather than imagined, but the pain intensity and suffering can be influenced by the patient's approach to coping.

 

 ATN pain can be misdiagnosed as "Atypical Facial Pain" (AFP).  Although attitudes are definitely changing with regard to limiting the definition and characterizations of AFP, a few physicians still write off any pain that they don't know how to assign to a specific known category, as "psychosomatic." Fortunately, the American Psychiatric Association (APA) is considering a major revision of the category of diagnoses in the Diagnostic and Statistical Manual (DSM) that were once called "somatoform pain disorder."

 

 ATN is tougher than Typical TN to treat with meds and requires different meds, often in mixtures. When anti-seizure meds such as Tegretol (Carbamazepine) and Trileptal (Oxcarbazepine) are found ineffective, then tricyclic anti-depressants like Amitriptyline may be tried. Although opioids appear to work fairly often for this category of pain, patients and doctors are both affected by prevailing attitudes of fear of addiction.

 

 Although some neurosurgeons have published data showing good outcomes for ATN by means of MVD, other physicians continue to seem resistant to risking their success statistics. Overall, it is true that surgical management of ATN pain is generally less successful than when the same techniques are applied to "classical" or "Typical” TN pain. One element of surgical technique that has been suggested by a few papers as constructive in improving ATN MVD outcomes is to touch or manipulate the nerve as little as possible.

 

Reference: Tiril Sandell, M.D., and Per Christian Eide, "Effect of Microvascular Decompression in Trigeminal Neuralgia Patients with or without Constant Pain".  For reprints, you may also e-mail per.kristian.eide@rikshospitalet.no.

 

Due to the factors discussed above, it can be especially important for patients who have ATN symptoms, to be seen and managed by the best-qualified physicians. In general, very few general practitioners or dentists in general practice will have sufficient training and experience to understand what they are dealing with. Some may not be able to diagnose the disorder at all. A better choice for most ATN patients may be a Board- Certified neurologist, orofacial pain specialist, pain management specialist, or anesthesiologist.

 

===========================

 

Could I have Temporo-Mandibular Joint Disorder?

 

Short answer: it's possible, but I suggest that it can be unwise to accept such a diagnosis uncritically from anybody in general dentistry without also being seen and evaluated by a neurologist. From 16+ years of talking with patients, I have come to believe that there may be large numbers of people wandering around with a TMJ diagnosis who very likely actually have some form of neuropathic facial pain rather than TMJ. And once the diagnosis is hung on you, it can be difficult to get medication or other help for the condition(s) you actually have. Some of the surgeries and splinting procedures used in TMJ Disorder can damage the structures of the face and complicate later treatment of neuropathic facial pain.

 

Long answer: Temporomandibular Joint Disorder is most probably not one but rather a cluster of related and unrelated structural and/or neurological problems affecting the face, skull, and neck. These disorders are characterized by an exceptionally wide range of symptoms. Symptoms include clicking or locking in the primary joint of the jaw, pain in the temples, jaw, and neck, headaches, ear pain, dizziness and vertigo, a sense of "fullness" in the ear, and possibly ringing in the ears (Tinnitus).

 

[Reference: see "Temporomandibular Joint Disorder", MedicineNet].

 

A significant concern with this diagnosis is that it is frequently made by a dentist or endodontist in general practice and who has very little training in neurology or complex pain assessment. "A 1996 NIH-sponsored Technology Assessment Conference on the Management of TMJ Disorders concluded that there was no consensus on what pain in the jaw signifies; what the condition should be called; and who should treat it. Conference members determined that it was impossible to know what treatments are effective due to the lack of clinical trials and that many people were being harmed by treatments."

 

[Reference: National Institutes of Health (NIH). “Technology Assessment Conference Statement -- Management of Temporomandibular Disorders.” Bethesda, MD. 1996

 

This reference and quote are from Mary Lou Ballweg and Carol Drury (Endometriosis Association),  Terrie Cowley (TMJ Association),  K. Kim McCleary (CFIDS Association of America), and  Christin Veasley (National Vulvodynia Association), Chronic Pain in Women:  Neglect, Dismissal, and Discrimination, “Analysis and Policy Recommendations” (May, 2010), p. 9, citing National Institutes of Health, “Technology Assessment Conference Statement -- Management of Temporomandibular Disorders” (1996).

 

The patterns of pain in TN -- particularly Atypical TN -- may overlap those seen in valid cases of TMJ Disorder. However, the problem for pain patients is that this overlap may not be recognized by dental specialists who have a financial interest in treating TMJ. One can encounter a classic example of the old principle that "when the only thing you have is a hammer, everything starts looking like a nail." I do not wish to imply in these observations either ill will or conspiracy on the part of dentists. But we must acknowledge that such diagnostic biases are real and may require significant and sustained challenge by the patient plus multiple second opinions to overcome.

 

If you (the reader) have been told that you have TMJ Disorder -- either as your primary problem or in addition to TN, there are questions that will need discussion with the diagnosing dentist or physician. High on the list should be "What are the causes of TMJ Disorder, and do you observe those causes in my medical history? What is the physical evidence for these causes in my case?"

 

These questions seem (to me) particularly pertinent toward dentists who claim that TMJ may be caused by emotional tension and teeth-grinding (sometimes called "Bruxism"). If you're grinding your teeth hard enough and often enough to cause headaches or jaw pain, then a reasonable person would expect to be able to observe signs of abrasion or scraping on the teeth themselves. If those signs aren't evident, then it seems to me prudent to get a second opinion before you undergo any surgical procedure or bite correction that can have long-term destructive side effects on your jaws or bite.

 

A case study may also be useful in understanding how TMJ Disorder is diagnosed. See: M. Drangsholt and E. L. Truelove, “Trigeminal Neuralgia Mistaken as Temporomandibular Disorder,” Journal of Evidence-Based Dental Practice 1(1):41-50 (2001).  I have not seen this article on-line. You may need to request it at a University Medical School library or Dental School library, on interlibrary loan.

 

==========================

 

Do Opiod Drugs Work for Chronic Facial Pain, and Are They Addictive?

 

The following is condensed from several postings to Stef's discussion thread on opioid drugs.

 

 ============

Good morning. I joined the discussion thread on opioid drugs in early March, 2011. I would like to offer a few observations, if I may:

First of all, I've talked with TN patients for over 16 years. For a portion of them, opioid drug therapy has been the ONLY thing that worked to even moderate their pain. For others, the opioids hardly touched their pain at any dose level that left them awake and cognitively clear. I don't think medical science has a clue just yet about what factors distinguish the two groups.

However, one observation has been offered here on Living with TN that I haven't seen elsewhere. Some Atypical TN patients believe that opioid medications may more consistently help people with their type of pain as compared to those who experience Type 1 (Typical) TN with its volleys of electric-shock pain. That's an observation that I intend to probe more deeply in medical literature, as I can create time.

 

A second thought: For several years, I collaborated on design, administration, and responding to patient inquiries to a facial pain website. My co-editor was a lady with acute and chronic occipital neuralgia caused by surgical error during an MVD for TN. Her only effective remedies comprised an opioid "cocktail" administered and overseen by a pain management specialist. Although she had periods of serious  breakthrough pain, she has continued on this regimen for more than 25 years. She functions in the outer world of work and has managed to put two sons through college as a single mom. Although she is habituated to high doses of opioids, she displays none of the addictive behaviors of drug seekers who have no chronic pain. For her, chronic constipation is a more significant side effect than getting high.

 

From what I've read over the years, my colleague's case is not unusual. Many chronic pain patients on opioid meds report that they have never been disposed to ever-increasing doses of their meds -- and likewise, that they have often tapered BACK on their meds until breakthrough pain got too severe to bear. Thus I think there is positive value in making a distinction between "dependency" upon opioids for controlling pain, versus "addiction" to opioid drugs that presents with deep cravings for the drug and obsessional involvement in securing a supply. From patient reports, I am also aware that for many chronic pain patients, narcotic withdrawal symptoms may be overshadowed by breakthrough pain when a previously effective drug is denied to the patient.

 

It is possible to live constructively and productively while managing pain with opioids. Much depends upon the personal bravery and good sense of the supervising doctor, in a climate of gross ignorance and sometimes active malice on the part of "drug war" advocates and government regulators.

 

Likewise -- in my experience -- it is emotionally unwise and unhelpful to "beat yourself up" for being dependent on drugs for the control of your pain. Taking drugs to control pain does not make you a bad or weak person, even if you are drug-dependent to function. This principle is true of anti-convulsive drugs such as Tegretol as well as narcotics.

 

There is ample evidence in the medical literature that when breakthrough pain is inadequately treated, it can become progressively more difficult to treat over time. This trend may be due to changes in the functioning of the Central Nervous System that generate chemically toxic byproducts of the pain response itself. Thus it may be in order to taper back on drugs if the side effects become overpowering. But tapering them either lower or higher should be done only with the consultation of a physician, and only to manage the balance between your pain and drug side effects.

 

One of the things needed to change the prevailing US political climate of anti-drug mania is a significant redirection of NIH research funds on chronic pain conditions and treatments. We can and should acknowledge that drug abusers are a complicating and confounding factor in obtaining valid treatment for people in pain. But we should not be required to sit still and shut up, when anti-drug crazies over-generalize and ignore human agony in their efforts to punish the abusers.

  Just my two Red cents, for whatever they're worth

 

 =============================

 

Is "Atypical Facial Pain" a Real Medical Disorder?

 

Short answer:  only in the most narrow sense is AFP a "real" medical disorder.  Numerous authoritative doctors regard it as basically a diagnostic label by reduction -- a name assigned to your pain after the doctor has been unable to come up with anything else.

 

Long answer:

 

Over the years, I have talked or corresponded with easily more than a hundred patients who were "diagnosed" by a doctor with something called "Atypical Facial Pain" (AFP). Several of the more than 1,600 subscribers to this site have had that label applied to them -- and sometimes with highly negative results. Doctors who should have known better have told patients, "I can find no medical basis for the pain which you report. I want you to see a psychiatrist for evaluation (or supportive therapy)." Patients who hear this message may recognize what they're being told in effect: "I can't fix you, so you must be a head case." Insurance companies sometimes recognize the phrasing also, with potentially very negative bureaucratic effects on the patient.

 

From researching multiple sources, I have come to understand that Atypical Facial Pain is basically a label by reduction, not a diagnosis. It may be applied to any type of pain in the face that is experienced partly within the distribution of the trigeminal nerve, but which crosses expected boundaries of that distribution in a manner that doesn't line up well with recognized disorders like Trigeminal Neuralgia or Facial Tendinitis. We can think of AFP as a fancy way for a doctor to say "Damned If I Know". It is a garbage diagnosis.

 

Some physicians mislabel any pain which crosses the midline of the face as AFP. However, medical publications now acknowledge that a small number of Trigeminal Neuralgia patients experience elements of pain on both sides ("bilateral") of the face. My spouse is one of those patients. She experiences a mixture of Typical (Type I) and Atypical (Type II) TN symptoms on both sides. Pain is most often one-side-at-a-time -- but sometimes both sides at once, with a somewhat different character on the two sides.

 

In some Internet sources and by some doctors, AFP has sometimes been regarded as a variant on "somatoform pain disorder" -- a psychological problem catalogued in the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association (APA). The baseline premise of this DSM axis is that physical pain can be imagined, created, or made worse by the distorted or obsessional thinking of the patient.

 

The psychiatric literature contains thousands of case reports involving what is called "hypochondriasis" (or "hypochondria" to non-MDs). The distinguishing characteristic of many of these cases is that the patient presents to the psychiatrist with reports of pain throughout the body. Pain is accompanied by high anxiety, chronic depression, and a "disproportionate concern" that there is something wrong with them that previous doctors have not been able to identify. Such patients sometimes "doctor shop," looking for someone who will take their ailments seriously. At one time, assertions of patients that something was wrong with them despite their doctors’ counterassertions were considered evidence of psychological disorder. If that isn't an example of a "catch-22" situation, I don't know what is.

 

For facial pain patients, I personally regard the use of terms such as "hypochondria" and "psychogenic pain" to be gross medical malpractice. I'm working with medical professionals and others to narrow the conditions under which such terms are allowed to be assigned, and to exclude facial pain patients from the DSM criteria entirely.

 

The APA is now revising the DSM for its 5th publication. I have filed input with the APA through their public commentary gateway, suggesting a significant restriction and narrowing of the newest (draft) definitions for what is called "Complex Somatic Symptom Disorder." This proposed entity lumps together earlier psychological pain problems in the field of psychosomatic medicine. I have also solicited the input of serving members of the Medical Advisory Board of the Trigeminal Neuralgia Association. I have learned that at least two of them intend to add to my earlier cautionary note to the APA and to encourage greater precision in the application of psychiatric labels to all pain patients.

 

I have written to the APA specialty committee now working on this part of the DSM-V. My main point is that there is no existing body of validated observational data that demonstrates either a psychogenic pain disorder or a therapy that is effective in treating the "disorder," when pain is observed solely or primarily in the face.

 

I am also lobbying at websites such as Johns Hopkins and Mayo for a general redefinition of "Atypical Facial Pain." I believe this diagnostic label by reduction should be recognized as "facial pain of undetermined etiology, whose occurrence crosses the expected distribution of the trigeminal nerve system." I also want to see psychiatrists cautioned explicitly not to assign a psychosomatic label to symptoms that may be better explained as Fibromyalgia, Psoriatric Arthritis, Lupus Systematosis, Diabetic Neuropathy, Systemic Neuritis, MS, or other neurological and anti-immune disorders.

 

One of the many elements of evidence that supports these changes of medical standards is a paper published some years ago by Dr. Steven B. Graff-Radford, a member of the Medical Advisory Board for the TN Association. One of our site members is a patient of Dr. Graff-Radford. The doctor has given permission to submit the following reference abstract to the public comment gateway of the APA in their revisions of the DSM-V:

 

“Is Atypical Odontalgia a Psychological Problem?”  Graff-Radford, S. B,,Solberg, W. K.  Oral Surgery, Oral Medicine, Oral Pathology 75(5):579-82, 1993 May.

[Journal Article] UI: 8155097

 

Several authors have asserted that psychological factors are the underlying cause of atypical odontalgia. However, objective evidence is lacking to support this claim. In this study, the Minnesota Multiphasic Personality Inventory was used to assess psychological functioning of an atypical odontalgia population. Means of the standard scores for each Minnesota Multiphasic Personality Inventory scale were within normal ranges. Standard scores for atypical odontalgia profiles compared with standard scores for a chronic headache group (matched for age, sex, and chronicity) were similar and scales for both groups were within normal ranges. These findings fail to support psychological dysfunction as a primary condition associated with patients suffering from atypical odontalgia.

 

The abstract is available in the PubMed database of NIH.

 

Late Breaking News (November 2011):  The Medical Advisory Board of the Trigeminal Neuralgia Association has published an article titled "Facial Pain Experts Establish A New Pain Classification", in which the assignment of Atypical Facial Pain as both a discrete medical entity and as a psycho-somatic disorder is debunked.  The following extract should give patients hope of eventually receiving better answers than such imprecise garbage diagnoses provide:

    === Begin Extract===

The term “atypical facial neuralgia or pain” was a wastebasket term applied by a serious contributor of a former era to a group of patients he did not understand. Many of these patients were our trigeminal neuralgia type 2 patients. It is unfortunate that many of these people were told they had psychological problems. Many developed psychological problems after the fact when told by everyone that such was their problem. Over the years, our areas of ignorance have progressively narrowed.

A non-pejorative and, hopefully, reasonable term for the ever-narrowing group of undiagnosed face pain problems: Facepain of Obscure Etiology (FOE or POE) to replace atypical facial pain in the Burchiel classification.

See:  Peter J. Jannetta, MD, John F. Alksne, MD, Nicholas M. Barbaro, MD, Jeffrey A. Brown, MD, Kim J. Burchiel, MD, Kenneth F. Casey, MD, Steven B. Graff-Radford, DDS, Mark E. Linskey, MD, Donald R. Nixdorf, MD, Bruce E. Pollock, MD, David A. Sirois, DMD, PhD, Joanna M. Zakrzewska, MD. "Facial Pain experts establish a new pain classification." TNA, the Facial Pain Association, November 2011, http://www.fpa-support.org/2011/10/facial-pain-experts-establish-a-new-pain-classification/

 

  == End Extract==

 

=========================

 

Is "Psychogenic Pain" a Real Medical Condition?

 

This question was addressed as part of a discussion thread in early 2011, when I inquired concerning whether any of our members had ever been referred by a medical doctor to a psychologist. Several responders indicated that they had seen a psychologist of psychiatrist. My thoughts on so-called "psychogenic pain" in facial pain patients are edited from that thread. In my opinion, for patients who experience pain primarily in the head and neck, the term "psychogenic" (i.e., "generated in or by the psyche") is deeply inappropriate. Given the abject failure of modern psychiatry to come up with reliable diagnostic testing for depression and anxiety (other than the reports of the patient and his or her expressed personal distress), I must also admit that I have deep reservations toward the entire field of psychosomatic medicine. I think a lot of psychologists are being paid to treat non-existent "disorders," when what they should be doing instead is assisting patients to gain more mastery over their own emotions and lives.

 

These things being said, however, we need to understand that bad or stressful things happening in your emotions can have an impact on pain happening in your face. Thus there may be a constructive role for psychology and psychiatry as elements of your overall personal support system, for purposes that you establish and control for yourself.

 

• Medical practice now acknowledges that chronic pain and chronic depression are co-morbid conditions. They tend to occur at the same time in many people, and both are frequently made worse by situational stress.

 

• It is also known that each of these conditions promotes or plays into the other. Pain exhausts us, disturbing our sleep and draining our energy for daily life. Depression can do the same, rendering us more sensitive to pain or more vulnerable to its emergence. This seems particularly true of breakthrough pain in facial neuropathy. I've seen research papers in medical literature that establish that depression can be reinforced by identifiable toxic chemical byproducts generated by chronic pain. It is much less clear that depression of itself generates chemistry that causes or promotes pain, except indirectly by draining our physical energy.

 

• Thus in my view, the term "psychogenic" is highly inappropriate when applied to facial pain patients. By using it, a doctor may imply or legitimate an attitude that the pain is the patient's fault and can be cured by a change in the patient's attitude or obsessional thinking. In my view, attempts to substitute psychiatric therapy for medical therapy are not valid medicine for facial pain patients. And this reality is increasingly being recognized by medical doctors who work regularly with such patients.

 

• When a physician makes a psychiatric referral with parting words similar to "there is nothing medically wrong with you -- you need psychological evaluation," in my view, a gross medical malpractice has just happened. Negative consequences to the patient of being explicitly or implicitly labeled a "head case" can be immediate, long-lasting, and in some cases even life-threatening if the patient "crashes" emotionally. Contributing to such a crash is fundamentally irresponsible behavior.

 

• There are appropriate psychological and emotional support measures for some patients, within a total program of pain management. These might include psychiatric or psychological support, counseling, Rational Cognitive Therapy, guided visualization, meditation, biofeedback, anti-depressant drugs, and anti-anxiety drugs for the management of mood, attention, and personal energy. The explicit goal for such techniques should be to empower the patient to help himself or herself live more fully, with less personal suffering and less vulnerability to breakthrough pain due to fatigue and sleeplessness. We'll return to some of these ideas further below.

 

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What Should I Do If A Medical Doctor Refers Me to a Psychiatrist for Evaluation?

 

• Before leaving the doctor's office, REQUIRE the doctor to tell you carefully and with precision, the reasons he or she has referred you to a psychological specialist.

• If the doctor uses phrasing that implies or explicitly states that you have psychogenic pain, or he or she voices frustration over his or her inability to associate your symptoms with a specific medical disorder,then

• Tell the doctor that he or she should wash out his or her mouth with soap! There is no such thing as psychogenic pain in facial pain patients and the term is often overused toward patients with generalized pain throughout the body system. Tens of thousands of Fibromyalgia patients once experienced this type of personal write-off, only to have medical science later figure out that their disorder is one of several auto-immune problems. A doctor's inability to figure out what's wrong with you should NEVER EVER EVER be blamed on or projected onto his or her patients!

 

Hearing stories of such incidents is one of the few things that can make me fighting mad and ready to spit nails.

• Inform the doctor that you will refuse psychiatric counseling unless he or she enters into your record clearly that the reason for the referral is for you to receive ancillary support while seeking a more precise diagnosis and treatment plan -- if necessary with another physician. Make clear as well your rejection of any implication that the pain you are experiencing is somehow your fault, or a consequence of obsessional or irrational thinking on your part.

• Request a copy of your medical records (you may need to pay duplication costs) to facilitate seeking a second opinion. Inform the doctor that you will formally protest any entry in your medical record which implies that your pain is psychogenic in origin and that you'll do so with both the AMA and the State Board of Medical Examiners.

 

My approach on this subject may strike some readers as "kick tail and take names." I know that's hard for some people. However, if pain patients are ever going to take back power from the minority of physicians who have mistreated them, then some variation on this script seems likely to be necessary toward the worst offenders. With at least a few doctors, filing a complaint with the State Board of Medical Examiners may be necessary to get their attention and get them retrained.

 

If you do not feel personally able to employ the assertive approach I suggest, then you may want to consider enlisting the assistance of a trusted friend or family member to join you as a (silent) note taker in any future interactions that you have with your physician. If you are hurting and distracted, a note taker can help you get better results by recording exactly what the doctor says and prescribes for you, for your later review. However, implied but not explicit in this arrangement, having a witness present can also alert the doctor that you don't intend to put up with anything less than the best of care.

 

===========================

 

What Can I Do to Help Myself Live Better Even while I'm in Pain?

 

There are many dimensions of pain and suffering. There is also an old but highly insightful saying about pain: "Into every life, a little [or among facial pain patients, sometimes a LOT] of pain will fall. But the suffering is purely optional." Many patients report a depressing sense that when facial pain moves into their lives, it "takes over" or "takes away" the dimensions of daily experience that make life a joy. A part of getting better is taking steps to take your life and your joy back even if you still have pain. It may be a somewhat different life than you had before, but it's yours to live.

 

These themes are deeply developed in a book written by a personal friend and correspondent of mine. Dinah Federer was born with a genetic neuro-muscular disorder that causes progressive weakness. She developed bilateral TN at the age of 35. She is now 48 years old, and has recently been forced to retire from her life's work as a rehabilitation counselor. But she's still engaged, still plugging, still living and helping. She's one of the bravest people I know (in the company of a good many others on this site, including my two co-authors, Stef and Gloria). Dinah's book is "Chasing Normal," and it's available from Amazon [select the link to read reviews].

 

With Dinah's permission, I repeat here, the following list of ideas to consider in helping yourself live better -- even while you are in pain. Each of these is expanded in her book.

Things to Remember as You Go Through Your Journey

• Be kind to yourself

• Look for reasons to celebrate what you‘ve done and what you‘re doing

• Talk about IT

• Ask for help

• Feed Your Spirit

• Take a nap

• Be open to doing things differently from before

• Plan ahead and be safe

• Meditate, relax

• Get out and give back

• Trust in higher wisdom; look for the learning and teaching opportunities

• Be patient with yourself and with loved ones; you‘re all learning a new way of life

• There is wisdom in taking it ... one day at a time

• Pay attention to what you eat

• Exercise

 

====================

 

I perceive a profound wisdom in these "things to remember." I would offer one further point in summary of all of the above. For chronic pain patients of all sorts, it's a wise and real goal to give up on "chasing normal." Such a chase can wear you out to no good purpose, in ways you can neither afford nor enjoy.

"Normal" -- for many people who DON'T have chronic pain, much of the time -- is a life of quiet desperation, stress, obligation, overwork, and/or submergence of self in the perceived welfare of others (who quite often don't really want the help or guidance that you push on them). Your pain can have a message for you, if these words describe the life that you were living before the pain came: give up the old life to find something BETTER! Dinah's book may be part of a learning process that can help you do that -- and in the doing, find ways to better manage and reduce your physical pain.

 

With improved pain management and better quality of life as our goals, there are other significant on-line resources that can assist us. One which has been recommended to me by a long-time caregiver and patient support leader is the American Chronic Pain Association. [select link to visit]. From that site, the following long extract reinforces the points made in “Chasing Normal.” The site is worthy of your exploration and further reading.

 

What We Have Learned 

In 30 years of helping each other, we’ve learned a lot. Here is a bit of that wisdom:

• We need the support of others who experience and understand chronic pain

• Recognizing emotions helps us to understand ourselves

• While our pain is certainly not all in our heads, attitudes and expectations do make a difference

• Learning how to relax is essential.  It helps prevent tension and redirects our attention on to other things we have some control over

• Staying active, within realistic limits, can help us remain flexible and strong and reduce our sense of suffering

• It is important to set realistic goals and chart our progress toward them

• Chronic pain not only involves the person with pain, but the family as well

• Hearing others talk of similar feelings and experiences caused by pain reduces our isolation

• There are no wrong feelings

• Half the battle is won when you begin to help yourself

=====================

 

How Do I Help My Family to Understand?

 

Apart from buying Dinah Federer's book and having your family read it from cover to cover, there is a story that I sometimes offer facial pain patients that might help to open an adult family member's eyes to the nature of a pain patient's perceptions and sensations. I shared that story here at Living with TN, with a lady named Lori, around the middle of May, 2011.

 

=====================

Lori wrote:

Have you ever had a person say, " You know you could laugh or smile, it will not kill you? I have. I was speechless, shocked and did not know how to respond. I thought I was having a great day. This lady said she saw me earlier that day walking outside and I looked grumpy. I just looked at her and shook my head and said I really enjoyed my walk today. In joking she said “You know you could laugh or smile more -- it will not kill you?” I nodded and give her a half-smile. Then she added the comment "You do not want to be known as the grumpy old lady, do you?" Again I nodded and half-heartily smiled no.

 

I really wanted to tell her this:

 

How I would love to be able to smile ear to ear and have my eyes open wide and laughing so hard that tears are rolling down my face, and holding my stomach. I would love to laugh like that. Instead I need to stay in complete control and not cross over a fine line you cannot see. You see, if I allow myself to lose control and really laugh, two things will happen.

 

First, the tears feel like razor blades cutting my face. As they roll down, they leave behind them a burning feeling for hours later, along with the pain in my eye.

 

Second, as I laugh out uncontrollably, I can feel my throat start to close up. I start to cough and cough. It becomes very hard to breathe. The wheezing starts and even more tears start to roll down, not because it is funny but it is hard to breathe. My face is burning and the little firecrackers have started to go off. The pain is increasing at a rapid rate with every cough and zapping my energy level at the same time. The fun time has gone into a possible breathing emergency and a possible jumping point for a flare-up (pain) in the face that may last for a few minutes -- and possibly for weeks if not months.

 

It is not that I am grumpy, depressed, or had a bad Botox treatment that has prevented me from smiling or laughing. I would love to take part in the fun too instead of sitting on the sidelines -- to be in the baseball game but never be able to go up to bat. I often excuse myself and go and sit in the bathroom or in a corner away from people. I know, I know... this is why people think I am anti-social and a grumpy, depressed lady. I need to separate myself so I can keep myself under control or get myself back into control. It’s just at the end of the day I do not want to be in pain. I do not want to have an Asthma attack and have a tube put down my throat to help me to breathe, ruining other people’s fun or coughing so hard that I pee myself (we all have done it). At the end of the day a simple smile can hurt.

 

So please, the next time when you pass by and say “You could laugh or smile it will not kill you”, think for a moment. In my case it just may!!

================

In responding to Lori's posting, I offered the following:

In the 17 years I've been talking with facial pain patients as an advocate and supporter, I've heard your story more than once, Lori. I don't know that there is any particularly snappy "comeback" that can help people to understand the mixture of feelings you experience in many of your days. But there was one story that a patient told me which I contributed to the book "Striking Back" that maybe goes part way. This is a close paraphrase.

 

"To understand how I go through each and every day, you have to imagine that I am followed through every waking hour by an invisible 8-foot tall demon. The demon pulls along with him, a little brazier of hot coals, in which he has placed several implements: a couple of knitting needles, a scalpel, a fireplace poker, a butcher knife. At random moments throughout the day -- but especially when he sees that I'm not anticipating what he is about to do -- the demon reaches into the brazier for one of his tools. Then he rams the red-hot implement through my cheek and eye, twisting it as he does. As I fall to my knees and curl up in a fetal position, I -- silently and unable to speak aloud -- plead with him in my thoughts to stop. But he never does, until my facial nerves have gone numb from repeated battering by this pain. He will do the same to me a few hours later, and there is no relief.… "

 

I know it's a horrendous story, Lori. But you have my permission to print it out and give it to anyone who just doesn't "get it."

 

Another source of information on helping family and friends to understand is an article that was originally written in a TNA-UK newsletter, and discovered by Debbie, one of the members here at Living with TN. It's a good bit longer than the note above, and has more dimensions, which may help a family member begin to understand what's happening to you if you find yourself unable to speak or even move, in their presence. See http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for.

 

==========================

 

How Do I Submit and Support a Disability Claim?

[with editing corrections as of June 13, 2011]

 

This question comes up frequently for pain patients who become unable to work for income, due to their pain and the side effects of treatment. It is a question that Dinah Federer has helped me to answer at least in part, for several people at various times. From her professional background as a former rehabilitation counselor, Dinah has developed a "standard" general response to people who want to know what to expect of the disability application process. I've edited and added to her input as I thought appropriate. Any mistakes remaining here are mine (Red's), not hers. Many working people have private or employer-provided short-term or long-term disability insurance coverage. You may find that you can receive support simultaneously from both private disability insurance and SSDI. However, SSDI is -- in my opinion and that of many others who work more closely with the system than I have -- a system set up to put you through hell before you are paid a dime. And no one ever apologizes. In any event, it is wise to apply for any benefits for which you may be eligible, and to prepare yourself emotionally for what might prove to be a rough ride.

 

If you have already quit a job or plan to in the immediate future, then go ahead and apply. However, even you are approved immediately (a rarity), SSDI won't kick in until you've been off work for at least six months.

 

When you need to apply for SSDI, you should contact your local Social Security office to begin the process. However, before you contact SSA, have a frank discussion with your treating physician(s) and explain that you're going to apply for SSDI. Ask  if they will support your decision. If so, ask them to write a letter and give it to you to take with you to the SS office. The letter should explain the Diagnosis, and Treatment to date. It would also be good for the doctor to state that, in his or her professional opinion, your chronic pain and/or side effects from meds prevent you from consistently functioning at the level of "substantial gainful activity" or SGA, which is an SS term meaning approx being able to earn $1,000 per month in competitive employment. Also, bring copies of your medical treatment records from the doctor(s) who've treated you for your condition(s).

 

If you don't go through the process above, then you can expect to be referred to a local doctor for evaluation. The central question that this evaluation will pose is "Can you work at any income-producing activity, in any work environment, even part time?" To get SSDI payments, the answer to that question must be a qualified "no." However, some people receive disability when they still earn the small amount below the SGA margin that the SSDI system allows.

 

Most folks are rubber-stamp "denied" twice as their applications pass through the SSDI system. People working for the SS Administration claim that this occurs because they are too short-handed to process all of the applications they receive, and they are required to respond within a limited period. So if you get a rejection, don't take it personally and DO NOT GIVE UP! You MUST appeal within the required time, or you mess up your ability to reapply for quite a while. After two denials, you may request a hearing with an administrative law judge who actually READS everything and makes a decision. If awarded, you get back pay to the date of application... IF it went to a hearing. It's important to get your doctors to phrase things in a manner that the Administrative Law judge will recognize.

 

Dinah writes, "I was a rehab counselor for 18 yrs until my disability issues forced me to retire at age 45. I'm 47 now. I have TN on both sides and have had gamma knife twice on each side... I am at my lifetime limit now.... I also have a neuro-muscular disability."

 

"In my State, if you use a lawyer for an SS hearing, the lawyer can only charge 20% of your settlement. Call your SS office and ask if there's a limit in your state. If not, do negotiate with attorney firms... don't accept their taking a high percentage of your settlement if you don't have to." I would add to Dinah's suggestion that you should NEVER pay the sharks a retainer up-front! That can be a prescription for being slow-rolled. The attorney shouldn't get a dime from you unless he or she wins the case, and you want him or her to be motivated to do it as quickly as he or she can.

 

Likewise, "make sure you get an attorney firm that just does SS. Lawyers are like doctors....they specialize. You wouldn't go to a podiatrist for a cold! Try your State Bar Association and ask if  there is an attorney referral service to help you find an attorney."

 

Page Leader's Note: there are also US national networks of disability law firms, that you may find with a Google search. One of them can be accessed at http://www.social-security-lawyers.net/. If you need additional help finding somebody, then please leave a question in the comments box at the foot of this page and one of us will try to get back to you.

 

Dinah continues:

"When you're at the hearing stage -- if you work strategically and mindfully -- you have a chance. Here are the key facts to get everyone on board with.....

 

• IFFFF you work, you must show that you worked IN SPITE OF continuous chronic pain

• Your doctor must agree in writing that your condition is valid and not likely to significantly improve -- and that it does, indeed, incapacitate you

• (IGNORE THIS ONE IF YOU DON"T WORK) ---- Any part-time endeavor on your part must be characterized as an isolated situation with friendly people who were flexible because of your relationship. Your case and application documentation should demonstrate that this situation could not be easily duplicated in the community

• Because of your pain levels, you are unable to CONSISTENTLY earn at or above SGA (substantial gainful employment, which is like $980-$1050 per month)"

 

"I did have clients approved for SSDI using the above facts. Get your doctors, therapists, friends you work for, rehab counselor, etc., to write letters echoing the above."

 

An additional note from Red: your lawyer will use the input of these people for the hearing. Some judges will do little more than read the material, although others may ask for your personal testimony under oath. Some attorneys won't use any document that you submit -- unless they have asked you for it and guided you through the information it should contain. So be prepared to do a few things over. It's one of the frustrations of dealing with the disability application process.

 

Still, if you get to the point of hiring an atty, you should have gathered significant documentation already using the guidelines above. START A FOLDER, KEEP COPIES OF EVERYTHING YOU SUBMIT TO SSA AND EVERYTHING THAT IS SENT TO YOU. GIVE COPIES OF THE ENTIRE FOLDER TO YOUR ATTY, BUT ALWAYS BE SURE TO KEEP COPIES OF EVERYTHING FOR YOURSELF AS WELL.

 

Material in the section above is expanded with additional details and links in our companion article, "Coping With Crisis".

 

=========================

 

References

At the beginning of this long webpage, we promised you assistance with research. That kind of assistance commonly involves quotations from medical literature, of which there have been a few in the material assembled above. However, I have assembled quite a longer list of medical references and links in my article, "Categorizing and Treating Chronic Face Pain", published on my personal website, "Giving Something Back." Feel free to visit the article or the site, and to post follow-up questions either there or in the comment box below. My co-moderators and I will make every effort to respond to questions on research issues, and to provide additional references from the medical literature or Internet sources. The many other contributors on Living With TN may also welcome a more interactive discussion in the various discussion threads and groups supported by the site.

 

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Comments and Questions

Feel free to enter comments and questions in any of the sub-sections of this paper which are linked from the main index. Especially if you find something here that you don't understand, ask questions. Add your own questions. Point out goofs if you see some. From time to time, as Page Leader, I may clean up and delete older comments, particularly if a response has been made in the content of the page itself.

Go in Peace and Power,

Richard A. "Red" Lawhern, Ph.D., Page Leader

Stephanie Poulton, Moderator

Gloria Erickson, Moderator