Julie's Trigeminal Neuralgia Resources

What is Trigeminal Neuralgia?

TN is an extremely painful neurological disorder affecting the trigeminal nerve in the brain. While the root or ganglion of the nerve itself is located near the brain stem, behind the ear, the pain from the irritation of this nerve is felt in the face, gums, tongue, throat, eye, eyebrow, or lips, depending on which branch of the nerve is affected. It is thought to be the most painful affliction known to humankind. Prognosis is not terminal -- most patients just wish it were!

I suffered from this disease from to July 1992 to September 1994, when I underwent successful brain surgery. So far I have been in remission from this terrible pain. While I had the disease I was isolated and afraid of the unknown. Most doctors did not truly believe that I had the disease, since it commonly afflicts people over age 60 (I was 24 at the time!) An MRI and numerous other tests revealed nothing. My family believed that I was an hysteric. Maintaining a social life was impossible due to the pain that occured whenever eating or speaking. I was unable to find employment until I was hired by an employer that didn't mind that I needed a keyboard and monitor to communicate.

During that time, I met several people who had or who have trigeminal neuralgia that provided me with resources and support. Special thanks to Larry and Terry Kinsey who flew all the way out to San Francisco to be with me and my lover during the scary weekend before my surgery!

I am interested in providing information and support to others with the disease, or living with someone who has the disease. Below are some links to my personal experiences with the disease, a mailing list that provides support for sufferers, and links to good resources that are both TN-specific or are medically-related.

On the Personal Side...

A shorter version of my story.

A longer version of my story.

A photograph of my incision four days after surgery.

A Bibliography of medical articles related to trigeminal neuralgia and other kinds of facial pain.

Trigeminal Neuralgia Association Homepage

Trigeminal Neuralgia Resources Homepage

Trigeminal Neuralgia/Hemifacial Spasm Homepage at Massachusetts General Hospital

National Organization for Rare Disorders (NORD)

Information about Gamma Knife procedures

General Medical Resources

PubMed Medline via the National Library of Medicine Access to over 12 million MEDLINE citations back to the mid-1960's and additional life science journals. Can order articles via "Lonesome Doc" system.

Medhelp - medical information written in lay language

Medicinenet - similar to Medhelp

HealthGate - Includes access to MEDLINE

Medical Matrix - comprehensive listing of Internet medical resources

Medscape - journal articles aimed at physicians. Includes searchable database.