Demographics of Neurological Face Pain at a Social Networking Website
(c) Richard A. Lawhern, Ph.D
March 15, 2012
Abstract
A demographic analysis was performed on 1726 patient registration records from 55 countries, at a
peer-to-peer social networking website focused on Trigeminal Neuralgia. While some demographic
outcomes aligned with sources in medical literature, the patient demographic for first emergence of
neurological facial pain was found to be younger than commonly noted in medical literature, by at
least 14 years (median age slightly under 41 years, versus "sixth decade" or even "seventh decade"
commonly reported). An analysis was performed to evaluate the potential impact of youth bias in this
finding, due to the online and self-selected nature of the patient community; youth bias was not
assessed as a significant factor in demographic results.
Over a fifth of patients in the demographic self-identified their pain as "Atypical" trigeminal neuralgia.
Up to 80% of the demographic was female. In at least a quarter to a third of the demographic, the
patient initially mistook their facial pain for a dental problem and saw a dentist as the first medical
professional consulted. In less than a quarter of cases involving a dental practitioner, was the pain
promptly recognized to be non-dental in character and the patient referred to a medical doctor. In a
third of cases seen by a dental practitioner, the patient was treated for non-existent dental problems and
pain did not resolve.
Introduction
Trigeminal Neuralgia (TN or "Tic Douloureux") is a relatively rare neurological disorder that produces
intense pain in one side (or in a few cases both sides at different times) of the face. The disorder has
sometimes been called "the suicide disease"1,2 and is widely considered to comprise the most
debilitating form of pain known in medical practice3. TN is also relatively rare, with an estimated
incidence rate of new cases on the order of 12 per hundred thousand population per year 4. Some
practitioners recognize two forms of the disorder. "Type I" or "Classic" TN is said to present as volleys
of intense, brief, sharp, electric-shock jabbing pain, each jab lasting up to 90 seconds and volleys
tapering off after one to two hours. "Type II" or "Atypical" TN pain is described as less-intense,
constant 24-7 burning, boring, aching pain. 5 Distinctive medical mechanisms for these two forms of
pain do not appear to have been clearly established in medical literature.
1
Wikipedia, "Trigeminal Neuralgia", 2012: http://en.wikipedia.org/wiki/Trigeminal_neuralgia
Yam dela Cruz, "Salamat doc -- the Suicide Disease", ABS-CBN News, October 30, 2011, http://www.abscbnnews.com/current-affairs-programs/10/30/11/salamat-dok-trigeminal-neuralgia-suicide-disease
3
Medicine.org -- Trigeminal Neuralgia, 2012, http://medicine.org/trigeminal-neuralgia-the-suicide-disease-may-be-themost-painful-condition-known-to-medical-science/
4
Koopman JSHA, Dieleman JP, Hygen FJ, deMos M, Martin Carola GM, Stirkenboom Miriam, "Incidence of Facial Pain
in the General Population", Pain (2009)
5
Jorge L. Eller, M.D.; Ahmed M. Raslan, M.D.; Kim J. Burchiel, M.D., "Trigeminal Neuralgia -- Definition and
Classification", Neurosurgical Focus. 2005;18(5) © 2005 American Association of Neurological Surgeons
2
Many sources indicate that more patients are female than male. 6 Estimated age demographics vary by
source. Some sources assert that Trigeminal Neuralgia most often first presents in the sixth decade of
life7,8. Other papers show a skewing of patient populations toward older age cohorts. 9
Because of its relative rarity and overlaps in symptoms between TN and other neurological or dental
problems, the disorder may present challenges to accurate diagnosis. 10 In a National Patient Registry
created by the Trigeminal Neuralgia Association in 1999-2002, over 11,000 surveyed patients reported
that they had been seen by an average of six different dental or medical practitioners before obtaining a
diagnosis. Many physicians in general practice also relate that they have never personally seen a case
of trigeminal neuralgia during 30 or more years of practice. 11
In part because of the rarity of neurological facial pain and because of difficulties in obtaining accurate
diagnosis and effective treatment, patients have in recent years increasingly turned to the Internet to
find both information and mutual emotional support. Several on-line communities and Non Profit
Organizations have grown up in response to this need. Prominent among these is the Trigeminal
Neuralgia Association 12. Other patient-to-patient communities having interests in chronic facial pain
include the TMJ Association 13, Brain Talk Communities14 and many others.
These on-line communities have significantly increased the visibility of relatively rare neurological
disorders -- and on occasion called into question whether they are quite so rare as was once thought.
For instance, in 1998 when the Trigeminal Neuralgia Association began to expand its on-line presence
and patient information base, major Internet search engines such as Google and Web Crawler typically
returned on the order of 4,000 "hits" for the term "Trigeminal Neuralgia". In March 2012, the same
search produces over two million five hundred thousand "hits". 15
One of the more recent entries among patient-to-patient mutual support sites is "Living With TN"
(http://www.livingwithtn.org – a subsidiary community of “Ben's Friends”), operated since October
2008. The present paper analyzes the demographics of patients who have registered at the website, in
an effort to address two questions:
1. Who gets face pain and at what ages?
2. How wide-spread are difficulties in obtaining accurate diagnosis and effective treatment?
6
Silvia RDT Siqueira, Manoel J Teixeira, and José TT Siqueira "Clinical Characteristics of Patients with Trigeminal
Neuralgia Referred to Neurosurgery", European Journal of Dentistry, 2009 July; 3(3): 207–212. Web Reference:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2741192/
7
University of Pittsburgh, Department of Neurological Surgery:
http://www.neurosurgery.pitt.edu/imageguided/tn_facts.html
8
Op Cit, Koopman et al (Mean patient age in demographic sample was 51.5).
9
Op Cit, Silvia RDT Siqueira et al, see Figure I.
10
Drangsholt, M, Truelove, EL,"Trigeminal Neuralgia Mistaken as Tempro-Mandibular Disorder", J Evid Base Dent Pract
2001;1:41-50.
11
Lawhern, R.A. -- observations as co-author of the 2001 TNA Patient Registry survey forms and a member of the data
reduction team [survey results unpublished].
12
http://www.fpa-support.org/
13
http://www.tmj.org/site/
14
http://www.braintalkcommunities.org/
15
Op Cit, Lawhern, R.A.
Demographic Analysis
The demographics of a substantial group of face pain patients were extracted from a download of
"Living With TN" membership registration data, current as of February 5, 2012. Thirteen fields of
membership data were employed to arrive at preliminary conclusions about the membership of the site
and some of the outcomes of patient diagnosis and treatment.
Gender [male / female]
Location
Country
Zip
Age
Birthdate
Date joined
Last visit
Membership Type [patient, relative, friend, medical professional, admin, other]
Type of face pain [Typical TN, Atypical TN, Trigeminal Neuropathic Pain, Other]
Date diagnosed
Treatments you have undergone
Share your TN story with us
In several areas discussed below, membership records were updated from the original database to
correct member entry errors and omissions.
Membership at Living With TN is world-wide, from 55 countries. The largest numbers of members
come from the United States (1284), United Kingdom (156 ), Canada (73), and Australia (58).
Categories of site memberships are indicated in Table 1 below:
Table 1: Types of Website Membership
Site Membership Categories
Uncorrected Database
Admin/Owners
Friends
Medical professionals/other
Relatives of patients
Member type not entered
Patients - age unknown
Patients - age self-entered or estimated
Patients supported by relatives (age known)
Total member records reviewed:
4
11
4
53
725*
8
1122
-1919
Corrected database
5
23
5
109
71 (narratives blank)
8
1695*
32**
1919
[*] See "Corrections to the Member Database", below.
[**] 1727 Records were analyzed for the site demographic, including 32 records in which the registered
member was a relative who reported the patient's age on first emergence of pain, or diagnosis of pain.
In the site demographic analysis, all records were removed for which a patient age at first emergence of
pain was either not explicit in patient narratives, or could not otherwise be bounded by a memberentered date of birth or date of diagnosis.
Table 2: Types of Pain -- Corrected Database (+)
Pain type(s) were directly entered by 969 members in the 1726 records analyzed for the demographic.
None of these entries was corrected during database review, though it became evident that perhaps as
many as 100 members were dealing with facial neuropathy rather than facial neuralgia.
Typical or Type I
Atypical or Type II
Bilateral pain
Other / not sure
No Type Entered
244
335
40
383
759
(98 patient narratives also mention "Atyp")
(from patient narratives)
(includes 3 "trigeminal neuropathic pain")
+ Does not sum: many patients entered multiple types in the “Type of pain” field.
Corrections and Additions to the Member Database
The database was reviewed to identify and correct the following types of errors or omissions.
- Although all members retained for the demographic had entered a date of birth for
themselves or an age for someone whom they were supporting as a friend or relative, almost half of the
site members originally did not identify whether they were patients, relatives or “other”. When
"member type" was blank in the member registration data, patient story narratives and treatment
history were scan-read to distinguish between patients, relatives, friends, site administration and
medical professionals. When narratives provided circumstances or relationship words, member-type
was added to the entry field originally left blank when the member registered. By this means, the
number of records for which member category was unknown was narrowed from 725 to 71.
- In 1101 patient records retained for the demographic, an explicit date of diagnosis was entered
by the member. When additional information on age of pain emergence was not available from patient
narratives, the age of the patient when diagnosed was taken as an upper bound on age when pain first
emerged. Given that many patients reported suffering for many years without getting a definitive
diagnosis, this bounding probably introduces some upward bias in estimates of median age when pain
first emerged.
- Patient narratives were reviewed for additional information that might permit estimation of an
age when pain first emerged, when lower than the age of the member at registration. Narratives
containing terms such as "my life", "first", “began”, “started”, "years" or “ago” were read to estimate
the patient's age from circumstances recorded. Records of “Friends” or “Relatives” were also read,
looking for age data on the patient being supported.
a. When an age was found in member narratives at which pain first emerged, this age
was directly entered into a supplemental corrected age column of the database.
b. In 20 patient narratives, age of first pain emergence was qualitatively distinguished
from the date of medical diagnosis by use of the words "for years" or "many years" in the patient
narrative. When the phrases "for years" or "several years" appeared, a patient age at first pain
emergence was estimated by subtracting five years from the date of diagnosis or the patient's age on
registration. When the term "for many years" appeared, 10 years was subtracted.
- In 624 records of the demographic, a date of diagnosis was not entered by the member.
Patient narratives were read to deduce the age at which pain first emerged. Wording was found in 391
patient narratives which allowed either a direct corrected age entry or a plausible qualitative estimate of
patient age when pain first emerged.
- 76 records were excluded from the demographic because the patient and the member were
different people and no patient age could be estimated from narratives. However, in most of these
records, an approximate generational age relative to the member could be determined for the patient
being supported. A bias check was performed to see if the demographics of this excluded group were
substantively different from the group included in the demographic. No bias was found.
Gender Demographics
There were 1919 records in the uncorrected member database, of which 918 entered themselves as
Female and 222 as Male, with 777 having made no entry. Records down-selected for the demographic
analysis were those in which entered data was that of a patient or a relative acting on behalf of a patient
whose age was known. A review was conducted of member user names during this down-selection, to
identify female versus male user names. The resulting gender demographic is shown in Table 3, below:
Table 3: Patient Gender Demographic, Living With TN
Records entered or inferred as Female
Records entered or inferred as Male
Records not attributable by gender
Total Records, Corrected Database
1255 (80% of gender-attributable records)
302 (20% of gender-attributable records)
170
1727
Analysis of Patient Story Narratives and Treatments
The analyzed demographic sample omitted site administrators, medical professionals and members for
whom the age of the patient could not reliably be determined. Of the 1726 patient records in the
demographic, 1596 had text in the “patient story” and 1703 in “treatments you have undergone or will
undergo”. In a few instances, text comprised “none” or “will fill in later”.
Text string searches were performed to estimate the number of instances in which key words appeared
in the membership story or treatment history narrative fields. Word selection was guided by the
author's 17-year experience as a patient advocate and webmaster for Internet chronic facial pain sites.
The incidence of several key word strings is summarized in Table 3 below.
Review of patient narratives revealed that some members had a history of face pain from causes other
than Typical or Atypical Trigeminal Neuralgia. There were 60 mentions of "MS" or "sclerosis" in
patient stories, of which 20 were associated with a pending or confirmed diagnosis of the disease.
There were 46 mentions of "tumor", 10 of "cyst" and 3 of "Chiari". 26 patient stories mentioned facial
injuries from automobile accidents, assault, or other blunt force trauma.
Not surprisingly, a significant number of members had diagnosed themselves with trigeminal neuralgia
or neuropathic pain by researching their own symptoms on the Internet. 82 patient records explicitly
mentioned "research" and 30 more mentioned "internet". Several narratives also noted that multiple
doctors and dentists had failed to diagnose Trigeminal Neuralgia ; some were actively resistant or
dismissive to diagnosing the disorder in younger patients. By contrast, many patients reported a
willingness on the part of dental practitioners to perform multiple extractions or root canals which did
not resolve their pain -- despite an absence of evidence for abscess in dental X-rays, often over a period
of years and on occasion involving the extraction of large numbers of teeth.
Table 3: Keyword String Occurrences
Key word string
Patient Stories
Treatment Narratives
“dentist”
371
11
“dental”
157
17
(1 or both terms occur in a total of 469 patient records)
“tooth”
“teeth”
“canal”
“extract”
"pull"
“bite”
“TMJ”
“mouth”
1 or more among 8 above
270
326
145
71
95
19
73
114
631
4
11
9
10
4
4
8
1
36
(Keyword strings are combined below from patient stories, treatment history or both)
“migr” *
“effects”
104
168
(“side effects”)
"convul"
“tegr”
“carb”
“neuront”
“gabapen”
“trilep”
“depr” **
1 or more of seven above
62
413
215
161
230
37
91
831
(anti-convulsive)
("tegretol", "tegretal", "tegratol")
("oxcarbamaz.." or "carbamaz..")
“surg”
“proced”
“MVD”
"vascu"
“otomy”
“radio” or "rf"
“knife”
"alcohol"
"glycer"
"balloon"
1 or more of 10 above
542
107
309
95
149
216
179
14
41
35
822
(surgical, surgery, sometimes dental)
(procedure, sometimes dental)
"Botox"
"bloc"
45
114
("Trileptal")
("anti-depr..." or "depress")
(vascular [de]compression)
(rhizotomy)
(radio frequency)
(Gamma Knife, Cyber Knife)
(alcohol rhizotomy)
(glycerol rhizotomy)
(balloon compression rhizotomy)
("nerve block", "stellate ganglion block")
Notes to Table 1:
* “migr” = word root for “migraine” which is sometimes misspelled in patient-entered data
** “depr” appears in multiple contexts, including “anti-depressant” and “depressed”.
--- --- --Strong patterns stood out in the patient data with respect to outcomes of facial pain diagnosis or
treatment by dental practitioners (dentists, periodontists, endodontists, oro-facial surgeons). One or
more of nine dental terms or word roots appeared in 631 patient stories and 36 treatment histories. It
was remarkable that many of the practitioners acceded to insistent patient demands for root canal or
dental extraction -- despite a lack of X-ray evidence confirming abscess or other dental problems.
The terms “dentist” or “dental” or both, occurred in 469 member narratives. At least 174 additional
patient records also indicated a history of dental work, described without these two words. Reading of
patient story narratives revealed the following range of outcomes and contexts for dental terms:
1. In 60 of 469 patient records reviewed, mention of the terms "dental" or "dentist" was
peripheral, imprecise, or context was otherwise unclear.
2. In 71 patient narratives, pain initially believed by the patient to be "dental" in character was
evaluated by one or more dental practitioners, with a finding that the pain was not dental in origin. A
practitioner then referred the patient to a family doctor, general practitioner or neurologist.
3. In 132 patient narratives, the patient had acute facial pain, saw dental practitioners and
received neither a diagnosis nor a dental procedure. Patients in this group later saw a medical doctor
or neurologist on their own initiative or at the suggestion of someone they knew. Several diagnosed
themselves by performing Internet searches on their symptoms, before seeing a medical doctor. About
40 records included "online" referring to patient research or online support groups, or "research" or
"self-diagnose".
4. In 154 patient narratives, the patient saw one or more dental practitioners and was treated
with antibiotics, root canals, multiple dental extractions (sometimes at their own urgent request), TMJ
therapy, bite correction, dental guards or major dental surgery. The terms "misdiagnose" or "misdiagnose" appeared in 32 patient story narratives, and "unnecessary" in 14.
5. In 50 narratives, the patient saw a dental practitioner for routine dental work (cleaning,
cracked tooth, crown replacement, other). Within hours to weeks after dental work was performed, the
patient experienced extreme facial pain which they later believed was an outcome of something done
by the practitioner.
Estimated Age at First Emergence of Face Pain
Median patient age in 1726 records
Average patient age
40
40.8
Median member age in 1726 records
Average member age
44
44.8
Number of patients 30 and younger
Number of patients 60 and older
370 (21.4%)
109
The youngest age at which pain was reported to have emerged was about 2 years old, and the oldest
was 86. Half of all patient pain cases first presented between age 35 and 49.
Estimated patient age at first emergence of face pain in the corrected database is plotted in Figure 1
below, versus the number of patients in each year group. Shape of the statistical curve appears closely
symmetrical about the median and Gaussian in shape. The mean and median closely aligned near 41
years of age. We do not see in this statistical curve, an assymetrical skewing toward older patients
which is reported in some sources. 16
Potential Demographic Biases of Patient Self Selection
The patient sample reported in this paper was self-selected. Each member searched the Internet for key
words, or was referred by someone else to "Living With TN", as a website that provides information
and support for people with facial pain, neuralgia or neuropathy. The process of patient self-selection
may potentially introduce two potential biases into demographic analysis:
1. Historically, Internet users have tended to be younger, more affluent and better educated
than National populations overall. For some types of demographic analysis, this may introduce a youth
bias in results.
2. People who join a patient-to-patient Internet support community as patients or close relatives
are often dealing with bad outcomes of previous medical and/or dental diagnosis and treatment.
Patients who have had a successful outcome from treatment are less likely to join or remain active in a
support community focused on the needs of people in pain.
16
Op Cit, Silvia RDT Siqueira
Figure 1: Patient Age at First Presentation of Pain, Living With TN
Youth Bias
Potential or significance for a youth bias in the computed demographic curve can be generally assessed
by comparing the ages of the website demographic to US population and Internet user demographics.
Particularly of interest are two related questions:
"What is the expected value of numbers of people age 30 or younger in a group of 1726,
randomly selected from a national population?" and
" What is the expected value of numbers of people age 60 or older in a group of 1726,
randomly selected from a national population?"
By far the largest number of members at Living With TN reside in the US, UK, Canada, and Australia,
all of which have similar national age demographics.
-- From 2010 population demographics in the US Statistical Abstract, the expected number
people age 29 and below would be 707 in a sample of 1727 drawn at random from the US population
(~41% of total US population, versus 21% seen in this demographic).
-- Expected numbers of people age 60 and above would be 310 (18% of total population,
versus 7.7% seen in this demographic).
-- Median age in the US was 37 in 2010,17 while the comparable figure for patients at Living
with TN demographic is slightly older at 40.9. The median age of all Members in the demographic is
44.8, including 33 who were supporting patients as relatives.
In the demographics at Living With TN, both people under age 30 and over age 60 are underrepresented relative to the US population as a whole. The relative rarity of trigeminal neuralgia in
young people is well established in medical literature. However, as elaborated below, Internet user
demographics do not appear likely to have significantly biased the mean patient age downward for
chronic facial pain patients registered at Living With TN.
According to the Pew Internet and American Life Project,18
"Serious medical emergencies cut across all demographic groups [in the US] and seem to
bump up interest in online health research. Fully 85% of internet users who experienced a
recent medical crisis say they look online for any of the health topics named in the survey
[high blood pressure, heart conditions, lung conditions, diabetes, and cancer], compared
with 77% of internet users who have not had that experience in the past year."
Likewise in the US,19
17
Statistical Abstract of the United States, 2012 "Population - Estimates and Projections by Age, Sex, Race/Ethnicity" Table
7, Resident Population by Sex and Age.
18
Pew Internet and American Life Project, "Who Gathers Health Information Online? -- Profiles of Health Information
Seekers", February 1, 2011. http://pewinternet.org/Reports/2011/HealthTopics/Part-2/Adults-who-faced-a-recent-medicalcrisis.aspx
19
Pew Internet and American Life Project, "Who's Online? -- Demographics of Internet Users
-- Among American adults age 18-29, 94% use the Internet.
-- For adults 30-49, 87% use the Internet.
-- For adults 50-64, 74% use the Internet.
-- For persons age 65 and older, 41% use the Internet.
One can readily perform a significance check on the potential impact of under-representation among
patients age 60 and older due to the online nature of the Living With TN community. In the patient
population analyzed in this demographic, there were 134 patients older than age 60, with an average
age of 64.9 years. If it is assumed that this group is under-represented by 50% due to non-use of the
Internet by older people, then one may "add in" the missing cohort and compute the average age of the
enlarged population. Addition of 134 members having an average age of 64.9 years to a base group of
1726 members with an average age of 40.9 years results in a demographic of 1860 members having an
average age of 42.6 years.
Thus it may safely be asserted that even if patients over age 60 are under-represented by 50% at Living
With TN, the "missing cohort" will have relatively minor bearing on conclusions drawn concerning the
average age at which face pain first occurs. This effect is certainly not large enough to account for the
14-year difference between median age of patients registered at this website (41 years) versus the
median age of new facial neuropathic pain patients expected from medical literature (mid-50's).
An effort was also made to ensure that records rejected from the demographic for lack of information
on the patient, did not introduce an age bias in the demographic analysis. The age of members
categorized as relatives or friends could be determined in 181 records and was an average of 41.6 years
-- three years younger than the average age among members retained in the demographic. The
generations of the members being supported by these friends and relatives could also be determined in
115 of the records. 31 patients were a generation younger than the member (sons, daughters, nieces),
43 were in the same generation (spouse, sibling or friend), 36 were in the next older generation (parent
or parental in-law) and 2 were in the generation of grandparents. Allowing for an average difference
between generations of 20 years, the estimated age of patients not incorporated in the demographic
could be computed as 40.7 -- very similar to the 40.8 average age of patients in the demographic.
Negative Outcomes Bias
As noted in the introduction, Trigeminal Neuralgia and facial neuropathy in general comprise a very
severe and life-altering form of pain. This pain and many of its medical treatments are known to be comorbid with depression, though there seems to be little or no evidence that depression itself is a factor
in causation. 20 Patients have likewise historically experienced great difficulty in having their pain
recognized and diagnosed.
Multiple published papers document the success rates of neurosurgical procedures in reducing or
eliminating the pain of idiopathic (classic or "Type I") Trigeminal Neuralgia. However, the author has
found no broadly accepted estimates for surgical success in so-called "Atypical" ("Type II)21
Trigeminal Neuralgia or in generalized trigeminal neuropathic pain due to trauma or organic disease.
20
Jannetta, P.J., M.D. and the Medical Advisory Board of the Trigeminal Neuralgia Association, "Facial Pain Experts
Establish a New Pain Classification", Knowledge Base of The Facial Pain Asspociation, 2011, http://www.fpasupport.org/2011/10/facial-pain-experts-establish-a-new-pain-classification/
21
Jorge L. Eller, M.D.; Ahmed M. Raslan, M.D.; Kim J. Burchiel, M.D., "Trigeminal Neuralgia -- Definition and
Classification", Neurosurg Focus. 2005;18(5) © 2005 American Association of Neurological Surgeons
Although medication practice standards have been discussed for this class of disorders by organizations
such as the International Association for the Study of Pain, the rates of treatment success, severity of
treatment side effects and persistence of pain relief seem to be largely un-documented for common
prescription medications.
In practical terms, the plausible result of factors summarized above may be that many people who join
a web site like Living With TN are likely to be suffering from pain that is refractory to treatment.
Website membership population will likely reflect "the tough cases". One may not extrapolate from
patient experience in this sample to draw conclusions on the proportion of successful or unsuccessful
outcomes for the larger group of all facial pain patients. However, it still appears valid to offer
observations drawn from patient experience, recognizing that these insights apply most directly to
patients who have had the most difficulty in a very difficult and disabling condition.
Demographic Observations
From analysis of patient age demographics, personal stories and treatment narratives, the following
overall observations can be offered for the patient membership at Living With TN.
1. Although some medical literature sources suggest that median age for emergence of Trigeminal
Neuralgia pain is “in the sixth decade” or even later, the median patient age at diagnosis among 1727
members at “Living With TN” is about age 41. Half of all recorded patient diagnoses at Living With
TN occurred between ages 35 and 49. Patients younger than age 30 comprised a fifth of the
demographic. Shape of the age statistic approximates a “Gaussian” distribution, with relatively few
cases first presenting at ages younger than 15 or older than 70.
2. A substantial majority of membership at "Living With TN" is female (up to 80%). This demographic
is even more concentrated in female members than is usually reported in medical literature.
3. Over half of registered patients either identified their type of pain as “Other/Don't Know”, or did
not enter a type of pain in the registration field reserved for this entry. This statistic likely reflects the
manner in which pain patients and their supporters find their way to a patient-centered interactive
website such as “Living With TN”. As noted earlier, a sizeable majority of chronic condition patients
now search the Internet to identify their own symptoms even before they are seen by a practicing dental
or medical professional. Thus it is natural that many new members at Internet sites such as "Living
With TN" will not know precisely what kind of pain they have when they register. They have come to
the site in a search of such knowledge.
4. Of the 581 members in the demographic who entered a type of pain in the registration form, 336
identified themselves as “Atypical” Trigeminal Neuralgia patients. This 57% proportion cannot be
confidently projected to the entire database without further analysis of narratives. However, even
without projection, frequent mentions of chronic 24-7 burning, boring, searing facial pain strongly
suggest that this type of pain is not "atypical" so much as simply "different" -- and significantly more
difficult to treat -- than the jabbing electric-shock pain of Type I or "typical" TN. Moreover, many
patients in the demographic experienced both forms of pain at the same time. Some had pain on both
sides.
5. At least 819 patients in the site demographic had been prescribed one or more medications, with
Tegretol and Neurontin the most often mentioned. One or more of nine keyword strings associated
with surgical treatment occurred 822 times, with MVD (309) mentioned most often. Rhizotomy or RF
ablation were mentioned in over 200 records and Gamma Knife or Cyber Knife in 179. Many patients
indicated that more than one surgical procedure was performed and more than one medication
prescribed. Severe medication side effects or medication intolerance were also frequently noted.
6. 650 member records contained one or more of the terms "tooth", "teeth", "canal", "bite", "TMJ",
"mouth", "extract" or "pull". The terms "dental" or "dentist" occurred in 469 patient story narratives
which were read and characterized in greater depth by the author. Fifty records mentioned the target
terms only peripherally. For over half of patients who related having seen a dental practitioner, either
no diagnosis was rendered or multiple dental procedures were performed without positive effect on the
patient's pain. Patients later found their way to a medical practitioner on their own initiative after being
seen by multiple dentists, endodontists, or dental surgeons. In less than a quarter of patient narratives
did a dental practitioner inform the patient that their face pain was non-dental in origin and refer them
to a neurologist or other medical doctor.
In the experience reported above, a general observation from medical literature is confirmed by patients
at this website: in large numbers of cases, a dentist will be the first medical practitioner seen by a
facial pain patient. From patient narratives at this social networking site, it appears that in many of
these cases, the dentist will not recognize that a neurological disorder is the source of pain, and may
perform unnecessary dental procedures under the assumption or belief that the pain is dental in nature - or at the patient's urgent request. This finding is qualified by the reality that many symptoms of
facial neuropathic pain overlap those of dental disorders, rendering diagnosis difficult and complex.
Many MD general practitioners also have difficulty diagnosing facial neurological pain.
Recommendations
The observations above give support to three overall recommendations to the medical community.
1. From the reported experiences of 1727 patients, there is an evident need for greater depth in
the training for both dentists and medical general practitioners, to better recognize and diagnose face
pain of neurological rather than dental origins.
2. Practitioners who see pain patients need to be aware that they will see younger patients
whose face pain may comprise trigeminal neuralgia or neuropathy. In a mixed population of face pain
patients, some of whom have neuropathic pain from facial trauma of various types, 20% or more of
those for whom the problem is non-dental in origin will be under 30 years old.
3. Many facial pain patients first experience debilitating pain near the peak of their earning
capacity in their early to mid 40's -- rather than later in life, in or just prior to the retirement years.
Thus pharmaceutical manufacturers and medical insurance companies may find it appropriate to
reconsider research funding priorities for the effective treatment of neuropathic facial pain.
About the Author
Richard A. Lawhern is the spouse of a trigeminal neuralgia patient who has symptoms of both typical
and atypical forms of this disorder, with pain on both sides of her face. His Ph.D. degree is in
Engineering Systems (Dynamic Systems Control – UCLA, 1976). Since 1996, Dr. Lawhern has
researched and authored multiple on-line articles and websites on behalf of chronic face pain patients,
corresponding with over 3,000 patients, family members and medical professionals. Dr. Lawhern
supports “Living With TN” (http://www.livingwithtn.org) as a site moderator, content author and
resident research analyst.