This note is to remind members that site administration has recently updated and refined the questions used in each member profile on Living With TN. The intention of these changes is to refine our knowledge and understanding of who is using the site and what their needs are.
We want to develop demographic data for our 1900+ members as a group, in hopes of publishing articles to influence the education and training of doctors and dentists who commonly see chronic face pain patients. Your individual data as a member will never be published or traceable to you as an individual. By contributing your information, you may help medical and dental professionals to treat face pain patients more effectively.
By analyzing and refining our member data since the site was founded, we have already learned some potentially startling things about face pain:
As of early February 2012, we had 1919 members -- nine of whom were site Admin or visiting medical professionals. We also had 97 relatives and 17 friends of patients. For 70 of our members, we did not have enough information to characterize their type of membership.
After reading the stories and treatment histories of patients, we are able to extract the following information so far.
1727 of our members appear to be patients reporting their own experience
73 members are relatives or friends supporting a pain patient
125 member profiles didn't have enough data to describe the patient helpfully.
(many gave no information in either the patient's story or their past treatments)
This leaves us 1794 patients for whom demographic data can be extracted.
A question of intense interest to patients, doctors, dentists, and the insurance industry is "how old are facial pain patients when pain first emerges and is diagnosed?" At Living With TN, half of all our patients had their first pain at age 41 or younger. 314 of the patients first had pain at age 30 or younger. Several patients declared they had had face pain "all of my life", and several relatives or friends are supporting facial pain patients younger than 21.
Of the 1794 patients in our demographic sample, 73 provided their date of birth, but did not fill in data on their personal stories or treatment history. For these patients, we used their age when they joined the site as an "upper bound" on their estimated age when pain first came into their lives or the life of a loved one. Some of these records may declare the age of a relative or friend rather than the patient. But it is not believed the resulting statistical bias or error is significant or trends toward either younger or older, in a sample of 1794.
The "average" pain patient at Living With TN is 15 years younger than the medical literature indicates is usual for trigeminal neuralgia patients.
Disabling facial pain is affecting more people in their peak earning years than has been widely assumed by doctors and the insurance industry. This reality might influence the urgency felt by insurance companies and medical researchers concerning the search for better pain management and eventually cure.
Facial pain is sometimes caused by medical or dental treatment.
There is another possible reason for our relatively young member population. Our overall patient age statistics appear to be biased toward the younger years because the emergence of facial pain is less "spontaneous" than dentists and endodontists have long been taught. There is reason to believe that a significant number of facepain cases are caused by dental work -- root canals, dental extractions, or other procedures. Such cases are not "spontaneous". They are iatrogenic -- caused by medical or dental treatment.
In the stories told about themselves by 1721 patients, the term "dentist" or "dental" appears in 468 records (both terms occur in 71).
One or more of the following words appear in 719 of the patient stories (31%):
"canal" (as in root canal) (148)
More than one of these terms appears in 245 of the 719 stories. We're looking at the patient treatments narratives for the same and other terms. I will post an update to this discussion when we have checked the treatment history records for these and other key words.
We are still refining our understanding of the several contexts in which these terms are used by patients or their supporters. It seems plausible that for over a third of our patient demographic, the first emergence of pain is either associated with a dental procedure, diagnosed (or mis-diagnosed) by a dentist, or mis-identified as dental in origin by patients themselves. This finding -- after we verify and refine it -- may be of interest to both patients and dental schools.
These findings are preliminary. In the coming months as our members update their profiles, we will reexamine and revalidate observations above. However, at this point there is considerable evidence in support of patients who have asserted that their pain was caused by a dental procedure.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, Living With TN